These are e-mails from a ketogenic diet group. This is the diet I was not allowed to put my son on. Listening to their struggles with a drug wean helped me to make a decision not to put my son on Tegretol. I noticed from listening to these mothers, common threads tied all the reactions together. Look for how many different drugs are tried and all the combinations of drugs and the changing of the original type of seizures to different types of seizures. Watch for the physical and mental changes that took place. Most of the time there is still no real seizure control. Thanks to them I did not give him any of the anticonvulsive drugs.
my daughter has behavioral problems thanks to Tegretol, liver problems thanks to Depakote, lost speech thanks to Topomax and sleep seizures thanks to Lamictal. Pumping chemicals into children isn't right -- it's just that we've been conditioned to always believe what we're told from the docs. Our doc said that none of the four previously mentioned drugs had side effects. He said the diet was too difficult. Wrong on both counts! Just go up there to the Mayo Clinic and tell them that you're there to put your son on the diet. . .don't ask them. . . tell them. Hope I don't sound too harsh...
For those of you contemplating the ketogenic diet, I must say that for us it has been a completely different experience than we expected. Our daughter never got any benefit from seizure meds (Tegretol, Topamax, Diazepam, Keppra, Ativan, Dilantin, or Lamictal), so we were skeptical we'd see much benefit from the diet either. However, her definable seizures are down 80-90% from where we started. For this we are ecstatic!
This is exactly what we've seen on EEG, too. My son, XXX, had his worst seizures while on Keppra. I'm not sure what diagnosis has been given to your daughter, but it seems from other parents that I've spoken with that Keppra doesn't work very well on kids with IS. Ted's seizures improved and stabilized (if you can call it that) at 6-10 clusters per day when we finally weaned him from the Keppra. On the Keppra, his seizures were very violent, and seemed to both cause and be caused by a frenetic hyperactivity. He had his first and most severe tonic-clonic seizure while on Keppra, during which he stopped breathing.
We were afraid to start the diet too-but it has been the best gift we have ever given our son. We too tried all of the meds available and tried he build-up of Lamictal and he got the rash-then we were told that he could have died from it. We decided that never again would we endanger his life to rid him of his seizures. Try to get your hands on the book The Epilepsy Treatment-The Ketogenic Diet written by Dr.Freeman or watch the movie First Do No Harm.
When we were in the ICU after a horrible status episode from Tegretol toxicity, XXXX couldn't stop vomiting. The neuro ordered an in-room EEG and they caught them -- the throwing up episodes were, in fact seizures. The question is -- which comes first. From what I've observed and read about abdominal epilepsy, problems in the gut trigger the seizure reaction in the brain. But the conventional theory is that the brain triggers the problems in the gut. I really don't buy that because I've seen what the meds, etc., have done to her gut and how that's related to an increase in seizures (both the complex partials and the vomiting
we were told by three ped. neurologists that the Keto diet wasn't an option for our daughter. But after going through hell with drug side effects and a horrific reaction to Tegretol.... we found a new neuro who was knowledgeable and experienced with the diet. 18 months later, she is doing well..... med free. She had a seizure recently bringing her grand total to TWO seizures in the past full year. We look forward to beginning to wean her off the diet in about six months to a year. I would just suspect that the docs who told you it wouldn't work for him may not know a lot about the diet and don't believe in it.
I have been surfing the internet to find as much information as possible about the side effects of Tegretol for children specifically. And, I have found no official information. The official information is related to adults who were involved in the studies. I did find on several Tegretol boards via Yahoo and Google comments by parents of children who have been on Tegretol. These are what they had to say (there were some good reports):some people say that their child gets a temper" ---went from a sweet laid back child to being very aggressive, no attention span and moody ---effecting behavior where he was very laid back at home, and at school behavior more aggressive, rude, violent toward peers, hears voices, suicidal ideas ---9 year old with MAJOR mood swings ---4 year old a complete maniac for a year on Tegretol, now on Neurontin and behavior is fine These comments have helped me realize that my daughter, who has been on Tegretol since age 14 months, has been battling against the side effects of Tegretol all these years. She has had to work hard at keeping her hands to herself and staying on task. And, she has a temper which is improving with the Tegretol wean. I really wonder what our special little angel will be like once she has these meds out of her system? I'm am so glad that we are going to be able to give her this gift of a chance to find out.
When XXXXX had her reaction to Tegretol, it was after at least six months of increasing seizures which her neurologist responded to by giving her even more Tegretol. We didn't see any real behavioral side effects but the increase in seizures is a definite side effect..... which everyone ignored! The final side effect for XXXXXX was bright red sores inside her mouth and throat which are the beginnings of a very serious and sometimes fatal reaction. She was weaned very quickly (over just three weeks) and had a 2.5 hr long status incident six days after her last dose.
After she was once again stable (back on phenobarbitol), I did some digging and found out that at that time (1999) there had never been ANY studies done on the use of Tegretol in children under four years old! XXXXXX was put on this drug at 13 months and was 3 yrs old when this reaction happened. I was horrified to say the least! This may be why you haven't been able to find any of the studies on young children...... there aren't any!
What about doing a quick drug wean, starting a new medication and starting the diet at the same time? My daughter will be going into the hospital on the 22nd to wean her current meds (Zarontin & Neurontin) and to start Felbatol. I think this drug will probably fail like all the others. We even tried Felbatol a month ago and XXXXX seizures increased dramatically so we stopped it after 5 days. Her doctor wants to wean her off the other drugs and try the Felbatol again to see if she responds differently to it as a monotherapy instead of with the other 2 drugs. She is going downhill fast. Beginning last week she started having tonic clonics several times a day and sometimes in clusters. She had a terrible reaction to Klonopin so we can't use that drug to break the cycle and her doctor said that Ativan and Valium would have the same adverse effect. So here we are waiting and I have been agonizing over what to do. I really think we should put her on the diet. We tried it 2 yrs ago but only for 3 weeks because XXXXXX quit eating and went downhill. We didn’t go through a keto center and the dietician had very little experience with the diet and I didn't know about the internet support that you have here. Her doctor does use the diet but said that he would like to try the Felbatol by itself first. Is there any reason why we couldn't try both at the same time. I know it is better to be off medications from what I have read here. If anyone could share your > experiences and advice I would so appreciate it. XXXXXX had myoclonic seizures that have turned into tonic clonics, she has some absence and tonics and is losing her already delayed cognitive abilities. I am so frightened.
My name is XXXXX and we live in Auckland New Zealand. I have three sons and XXXXX the youngest (3 in May) has been on the ketogenic diet for one year. XXXXX started having complex partial seizures within the first 24 hours of his life and has been on various, huge amounts of epilepsy drugs. He has been hospitalized approx. 15 times for intractable epilepsy but since last week is completely drug free. XXXXXX is also blind, he was born with an eye condition that caused the retinas to be ripped off the back of his eyes. A condition that was not diagnosed until it was too late to save any vision (probably the cause of such terrible seizures early on). XXXXX is cruising around furniture but is not walking independently yet or speaking. He is globally developmentally delayed but interestingly has started to say Daddy and hello in the last week since his epilepsy drugs have gone. At 12 months he said all the usual - Mumma , Dadda, Bubba, but then we started the many combinations of drugs and all language disappeared until a few days ago. We cannot underestimate the side effects of these drugs. Sorry to digress.
Here is our history:
In February 1996, my daughter had just turned five, was totally normal, and had her first seizure (classic grand mal). Three weeks later another, a few weeks later another. Then, in April, she started having three seizures every eight days. You could set your calendar by it. We are a very non-medical family, but by now we took her to the doctor. We chose not to medicate, believing we would rather deal with the seizures at this point than to have her constantly medicated. Then came the end of May and four days straight of seizures. They were timed like labor in reverse (they were 10 minutes apart, then 20 minutes apart, then 30, eventually an hour, two hours, four hour and eventually ended). At around this time we discovered Klonopin. We used this to stop her serial seizures, which she continued to have. She never just had one seizure. She would have 20 or 30. We would give the Klonopin as needed. Our thoughts at this time were that we would rather give Klonopin once or twice a week rather than medicating every day. Her seizures also changed. She still had grand mals, but also had jerks (myoclonic?) and drop seizures. Some days she seized in one form or another most of the day. The drops were the hardest to handle. She could not go off of the carpeting. When we went out shopping, we had to hold her VERY firmly at all times. When she dropped, it was very hard for even a strong person to keep her off of the floor. These, I thought, were came with the most danger of injury. At least with the grand mals she was protected by the jerking arms and legs. With the drops she would suddenly be flat on her face, and be coming out of it as she hit the floor. These were tough.
By the end of the summer, she was getting Klonopin so often that it no longer made sense not to medicate. She went on Tegretol in September, and had no seizures for five weeks! It was amazing. However, they returned after five weeks. We tried to work with Tegretol for several months, but it never really did the trick. In February of 1997, we switched to Depakote. That took the edge off of the worst of the seizures, but she still had seizure activity most days.
After fooling with Depakote all year, we were looking for a change. My husband did a little investigating and asked the doctor for Dilantin. She started Dilanitin in September of 1997 and NEVER AGAIN had a seizure while awake (with only one exception). Her days were redeemed. She occasionally didn't feel well, especially if she had a rough night, but most days were good. During sleep, whether at night or in a nap, she would still seize.
She has been on Dilantin now for 4 1/2 years. There is always a fine line between the effects of the medicine and the effects of the seizures. (The seizures still being only during sleep). I discovered through my sometimes sloppiness in giving her morning dose, that if she gets less meds, she feels and looks better. Her eyes are brighter, her spirit is better, etc. However, skip a few too many doses and she had too many seizures and then feels bad during the day. Because of this, we started giving her less in the morning and more at night, but with the same total dose.
XXXXX started precocious puberty when she was 7, had been drug free and on the diet 4 yrs at that point. Before the diet, she was on Phenobarbital, then tegretol with 1st dilantin, then with diamox. Now shes 10, 4'7", and rapidly developing...
Can Seizure Meds make Kids go into Puberty Younger?
XXXXXX went into puberty at 10 when they started the meds also. XXXXXX is to put it mildly a very endowed young lady when she started the diet she weighed 107 lbs, 5 ft 2 in tall, 24 inche waist and 38D
Don't know about keppra. But it wouldn't surprise me that this would cause the kids to go into puberty. XXXXXX started on Tegretol at age 7. She immediately started getting pubic hairs. At age 7 for crying out loud. Had a full set by age 8. Don't know if the pediatrician or neuro could do anything for this. Unless you want to change meds.
I'm new to the list and the diet, but I can tell you that Keppra turned my sweet son into an unmanageable whirling dervish. Non-stop frenetic agitation for days on end. I was never so exhausted in my life! Don't know if it can also express itself in rigidity, but I wouldn't be surprised
XXXXXX is just barely 9 1/2. I've noticed that his leg hairs have gotten darker over the last six months, and tonight, when I was giving him a bath, I noticed he's growing pubic hairs. 9 1/2 seems really young.
My daughter was on Kolonopin and Topomax together and drooled like crazy. The front of her shirt would get soaked. The doctor took Rachel off Topomax when we started the diet and no more drooling. She is still on a small amount of Kolonopin but no drooling.
Foggy mind after another hospital stay with XXXXX so I cant remember what you've just weaned, sorry. However, when we weaned lamictal from XXXXXX the wean was quite easy, with just a few small sz extra after each dose drop. But, 10 days after the last dose was given, XXXXXX started having the most severe sz's we'd seen in more than 2 years. Nothing else had changed at the same time so we were convinced they were withdrawal sz and waited it out. It was hard, but I was sure I was right, in spite of neuro wanting to put the drug back into XXXXX's regime. In the end they stopped suddenly after 2.5 months. I'm glad I was patient and for the support from members of this group.
I looked up the side effects of keppra of course like topomax they don't say anything about causing puberty.. but at 5 years old XXXXX had grew an abundance of public hair and her breasts started enlarging
XXXXX is somewhat the same during a medication wean (dilantin) Things go well until he gets used to the reduced level of medication and then his bad behavior and hard time falling asleep starts to creep back in. As soon as we reduce the medication again - things are fine until he gets used to the level again. Wonder how he will be when he is off this medication?
She seems compelled to tense all her muscles to the point of rigidity; while it is definitely not seizure activity (not only is she alert and interactive and tries so hard NOT to tense, but blood chemistry tests show no ionic changes consistent with seizure-induced rigidity), it is completely unlike her baseline self. The rigid episodes have shown improvements with each drop of Lamictal, though they are far from resolved. They creep back in as we get closer to the time to decrease again.
You're lucky the neuro believes in withdrawal seizures. I slowed down the wean toward the end with Topomax which was a terrible wean. I was able to avoid withdrawal seizures that way.
She is still seizing at 11:30 pm and 6:00 am. The one at 11:30 pm is getting shorter down to 23 seconds, but then she seems to fish gape (eyes open close, mouth open close) for a while. Then the one at 6:00 am seems to last about 40 seconds or so, then silence. She is whiney and sometimes I wonder if she is toxic on either the lamictal or the zonegram or the kepra. It's possible I suppose-but after being "normal" seizure free, this is hard to go back to. Our neuro has said "stay the course" and much of what I've read on the web says that you just have to get through this, but oh, its rough, since somehow the whole family gets upset.
Why doesn't someone tell you about the drug side affects when they put the kids on them?
I looked up Trileptal. It said seizure drugs cause hair growth, but didn't say so for Trileptal. Keppra, they wouldn't know of course, because they're doing the study on children right now.
It could be that xxxxxx is ready for another Depakote reduction. I find that xxxxxx stabilizes after a reduction in her Lamictal, then when she has an increase in seizures or insomnia (side effect of Lamictal) I know it is time to reduce again. The diet seems to exaggerate the effects of the meds as they are metabolized differently. Too high a level of meds can cause seizures.
We experience difficulty sleeping at night, extreme irritability, and lack of appetite, drooling, clumsiness and sleepy during the day. It did get better. It took about a week or week and 1/2. HANG IN THERE. xxxxxxx also had the atypical absence seizures and the atonic head drops. I hate those little buggers. When do you find she has the most head nods and when did they start? Just curious. We haven't seen any head nods in a while only the sub clinical stuff here and there.
XXXXXX was on Topamax before starting the keto diet. Did you know it can cause kidney stones? XXXXX was unbearable on Topamax. The teacher wrote a letter to complain to the neurologist. It was the catalyst that put XXXXX on the diet. Thanks for letting me know.
Side effects may include:
Abnormal thinking, aggravation of existing emotional disturbances and phobias, agitation, anemia, angioedema (swelling of face around lips, tongue, and throat, swollen arms and legs, difficulty breathing), allergic reactions (localized swelling, especially of the eyelids, cheeks, or lips, skin redness and inflammation), anxiety, confusion, constipation, decreased breathing, delirium, difficulty sleeping, dizziness, drowsiness, excitement, fainting, fever, hallucinations, headache, increased physical activity and muscle movement, irritability and hyperactivity in children, lack of muscle coordination, low blood pressure, muscle, nerve, or joint pain, especially in people with insomnia, nausea, nervousness, nightmares, psychiatric disturbances, rash, residual drowsiness, restlessness, excitement, and delirium when taken for pain, shallow breathing, sleepiness, slow heartbeat, slowdown of the nervous system, sluggishness, softening of bones, temporary cessation of breathing, vertigo, vomiting
XXXXX looks like she has an allergic rash (skin, especially face is very red and splotchy in fine little points). Seems like I was supposed to watch out for something like this with Phenobarbital?? Naturally its Fri night won't be able to reach doc til Monday. Its definitely an allergic rash, the question is to what?? Her behavior tonight is monstrous...seizure due any day. Holding off on the carnosine til I get this new wrinkle ironed out.
The other thing our neuro said was that it was possible that XXXXX was dealing with an accumulated reaction to all the lamictal drops we've done over the past four months, so that this was not unexpected-except by us! Anyway, thanks for your feedback, we'll see how the night goes. I may post sometime in the late night or try for the morning.
It is a long and difficult road with some weans. I found the lamictal wean to not be too bad while actually doing it. XXXXX would have more seizures each time the dose was reduced, so I just gave up doing the regular dose drop (ie-removing a certain amount each week/2 weeks) and just waited till she stabilized and returned to "normal" seizure numbers, before dropping the dose again. The wean took 3.5 months, rather than the one month at the wean rate that the neuro suggested. I'm glad I did it much slower, as I believe it saved XXXX (and us) the drama of more severe seizures during the wean.
I know many children do well on Topamax, but this drug was a disaster for our daughter. Not only did it increase the frequency, power and severity of her seizures, it also caused her to have constant slurred speech, ataxia, bedwetting, restless sleep, and an inability to finish a sentence, concentrate or learn. She was declining right before our eyes and her seizures were out of control. As we weaned, things got better and better, and the normal XXXXX returned. I would have to say my vote is that the Topamax was probably your culprit! Since being on the diet, XXXXX’s seizures have reduced from hundreds a day, down to 15-25 per day - she's brighter, more alert, and learning new things each day! Good luck!
We too had the greatest control with depakote. The only problems we had was that the amount it took to control his seizures (750 mg) caused his platelets to drop and his appetite to go away completely. He wouldn't eat for days. If it weren't for those problems, we probably would have kept him on the depakote.
My next goal for him is to wean him off of the phenobarbital. That one scares me because his seizures always go through the roof when we try to wean.
XXXX managed on depakote for about a year but we had to keep raising the dose every time she broke through & then she continued to break through as she became accustomed to the new dose until she got toxic.
We got to see the pattern of my son's withdrawal behavior and would wait until the behaviors subsided (basically rages, although we had loss of speech and hallucinations also toward the end---we're sort of a worse-case scenario---you'll probably have it much easier!) before making another cut. The withdrawal symptoms were much worse towards the end as my son's body fought a battle to win back this most addictive substance!
XXXX sounds much like XXXXX was on Topomax. It was the worst time of our lives. She was completely "gone" - and it was like there was no way to reach her. The teachers at school were crying - it was just horrible. We were never on more than one med. Just played musical meds from one to another, until we went on the diet and weaned off Lamictal. So I don't know about how that can go on the diet. But, I've read on this list, that when you wean one, the effects of the other can be more pronounced.
I would call your doc and tell him/her about the nosebleeds etc. Getting platelets too low is very dangerous. It sounds like you have some of the symptoms-maybe its a fluke but I would get it checked. Depakote is notorious for dropping platelets and that’s why they give you carnitor (nasty stuff). If you are coming down on the depakote, it will probably resolve itself but I would be extra cautious with those platelets.
I see the vaccine or mercury damage issue a lot with seizures add adhd and autism or PDD which are all related and all may be really mercury damage-same symptoms. I have joined the mercury list and have had some good advice from chemist Andy Cutler who cured himself and wrote a book about it.
We've only been there once, when XXXXX was toxic on Depakote and had a paradoxical reaction to Valium. It was a nightmare, we couldn't wake her up. So, we didn't really get to know anyone well. The occ. therapist who came to our room was med height, slender build and long brown hair. Very nice. Didn't know there was a gym on the second floor! In retrospect, when she was started on Lamictal initially, she had more seizures with each dose increase. I was told it was normal for this to happen as her body adjusted to the higher dose. . . . . . . now I wonder about that!
The diet has been our savior, in that, even when she was on 3 meds, she was still having at least one seizure a night. When we started the diet, XXXXX went toxic on Lamictal, and the first 21 days of the diet ranged from "wow this thing is working," to "is she going to die." She didn't, we got off of the high dose of Lamictal very, very quickly, and she is mainstream in kindergarten, and looking forward to first grade. We've still got issues, since some days she forgets everything she seemed to know, and don't know why. The diet is a pain in the ____, and my only regret is we didn't do it sooner.
My name is XXXXX and I'm the mother of XXXXXX, age 6, keto since 12/10/01. She has intractable epilepsy, and is on Lamictal (which we are currently weaning), Kepra, and Zonegram. We have achieved seizure control, in that they've stopped, except when she has had strep (once-a very bad thing for kids who have epilepsy), a virus, and foods she shouldn't have. She has been seizure free for about 15 days this month, since she just got over the virus which lasted a week at the end of March.
name is XXXXX, mom to ketokid(since July 01) XXXXXX(7) and XXXXX (14...an awesome sister....a big help). Both our children are adopted. XXXXXX was five weeks old when we got her....at that time she had been having 'breath holding' spells which we later discovered were hardly that...after a second EEG we knew she had seizure disorder due to brain injury, the connotations of which we would only knew as she grew older. At that time she began Depakene which later changed to Depakote which was easier for her stomach. She was developmentally delayed but mastered each stage, walking by age 2 but was weak and had difficulty with balance. Language was also delayed but she was making progress. When she was four she began having real difficulty with falling, a few months later we discovered she was having invisible seizures. She would be standing and baking with me and she'd just fall off of her stool for no reason. Shortly after we found this out, having decided to go on a drug study "Topirimate", she got chicken pox which landed her in the hospital with complications...a severe ear infection and mono.....she was just home from hospital recuperating about three weeks later, she was back on her feet, tottering around walking along furniture, trying to regain her independence when she fell leaving the supper table. We discovered several days later that she must have cracked her femur during this fall, after seizures two days after one another she pulled her femur right apart(we were told she had osteoporosis due to anticonvulsants and the immobility she had experienced the previous few months).....in hospital, casted, sent home, seizured again due to constipation, back in hospital recasted because she had bent the screws....this time a body cast to prevent this happening again...she was immobilized for 11 weeks.....a nightmare...it was horrible. When the cast came off(she had started Topiramate while in cast) she could do NOTHING.....she just lay on the floor immobile.......we thought it was due to being casted for so long........several months later after trying to get her off of this drug......trying other drugs which caused more problems we demanded she be taken off of it cold turkey and back to depakote. Within a month off of this horrible drug she began to regain skills she had lost....she went from only being able to roll to sitting independently...her language started coming back....it was a flower blooming.....like Spring after a long Winter. Another year passed and we still didn't see the XXXXXX we knew before the break so we began asking about the diet. Her seizures were in control but we wanted to see what a difference being off the meds would make for XXXXXX, especially physically. We wanted to give her this chance to get back on her feet and walk again. We realized it was risky because of the osteoporosis but our neurologist assured us that with less meds she would be physically stronger and able to do the weight bearing so critical for building bone density. XXXXXX has done incredibly well.....after three opinions from orthopedic specialists we decided to have the screws out of her hip this past January...unfortunately the surgeon who did it didn't do another x-ray beforehand...if he had he would have seen that her bones have not improved and the screws shouldn't have been taken out.......three weeks ago XXXXXX broke the same hip and we also found out that the other hip is in worse condition...both had to be pinned. After the surgery in January the Dr. reassured us that it was fine for XXXXXX to be back in her walker the next day....which we did but her bones were not able to withstand the activity......BUT XXXXXX is doing very well....she is still in pain. Today we took her for a walk in her wagon and tonight we will pay for that bumpy ride.....but because of the diet and being on half of the meds we started with last July....she is doing amazingly well. We are hoping to get her in for another bone density test soon and also see an endrocologist. I am so thankful for the help I have received from so many of you online....thank you and God bless you and your precious children!!!!!!!!!!
Trust your gut. . .we started very slowly. . .never got up to the full recommended dose. It did stopAnna's seizures, but I think that's because it essentially stopped her brain from working, period. Most of these drugs aren't tested on children – so the impact on a developing brain can be devastating, as opposed to the impact on an adult brain. Glad you're off it it!—
After out horrible experience with topomax our neuro admitted that a high percentage of kids (I think it was at least 20% have such significant cognitive and behavioral regression on Topamax that they have to come off it. I suspect the actual number is a lot higher. My son lost his ability to think and talk coherently. And, if that weren't bad enough, it made his seizures worse and gave him an all-body rash
Phenobarb is an ugly bugger to wean. That's all I know. And I don't think there is anything wrong with the benydryl to help, if it helps. I just had pompous neuro that if it didn't come from him, he made a joke about it, or vetoed it. never should have listened to the ass. he doesn't live with us
Pheno, from the first two times I tried (and didn't know how) gave seizures a month later. One time because we cold turkeyed her. the second time, it came with a fever. 5 yrs later, with neuro's blessing, and 1 month with an idiot er dr for the withdrawal seizure (nightmare). After that, I did try again.....it seemed the withdrawal seizures came every 7 days then. I'd give her skullcap for day 5,6,&7, that stopped the withdrawals until she got to down to 2/3rds of her normal dose. Then I stopped. Went chiropractor route. And ended up with seizures every month thereafter. And even after she was placed on dilantin a yr & half later (the seizure were worse while on the dilantin). Went back to phenobarb after about 2 years, and the rest is just history. Not that good of history either
Ditto to coming with a warning of what it could do to a child taking it.....XXXXX lost a year of her life because of the topomax......I have heard many similar stories of others......it's simply not fair.
She also had problems with Keppra, not outright aggression (well, some- like stepping on her twin brothers), but mostly wild and dramatic mood swings. She goes from a calm, charming little girl, to anguished, distressed crying fits (over, say, getting milk in her sippy instead of juice) and back again within seconds. It's making my head spin, and is wreaking havoc on the family. She was on pretty hefty doses, 4 times a day (!!), but like I said, weaned off quickly and fairly easily.
ANYWAY, reading this group's posts over the past couple weeks has me scared to death about weaning her meds once the diet starts. However, weaning her meds is one of my major goals of starting the diet, as her cognition has been so severely affected by meds. Why is it so tough to wean on the diet??!!?? She's only been diagnosed since Feb '02, but has been quickly weaned off Tegretol, Depakote and now Keppra without any adverse effects (her latest breakthroughs happened before the Keppra wean started). Is it the length of time the med is in the system prior to weaning, or is it the diet, or is it both? She is now on Topamax (100mg in am; 75 in pm) and Lamictal (started March 4th, now on 20mg in am; 25 in pm, increasing 5mg every 4 days). Keppra will be done this Sunday. I'm tempted to not increase her Lamictal any more in anticipation of starting the diet. Any thoughts? I'll obviously make this decision with her neurologist, but am interested in your perspectives. Lamictal and Topamax sound like particularly nasty weans.
I posted recently about my daughter XXXXwho is 3 y/o and on the brink of starting the diet. Well, she's scheduled for May 7th at Hopkins. She was originally scheduled for April 15 as a study patient at Hopkins but that was canceled because she miraculously responded to Topamax and on the day the study began, she had no clinical seizures (awful EEG though). Lo and behold (no surprise) she's breaking through again, so off we go.
I'm so sorry you're seeing this happening. I did wean my daughter off Tegretol but she was on a liquid at the time (pre-Keto diet) and so it was easier to make the cuts. We had to wean very quickly..... completely off in three weeks.... because of a reaction she was having. Still had a status withdrawal seizure that was really NOT fun (4 days in ICU). I hope they can advise you about splitting those tablets. We had tried a time-release type of Tegretol (Carbatrol, I think) at one point.... but it was capsules with tiny beads inside. We had to sprinkle them on food and get them down her quickly. If that was the type you are using, I suppose you could weigh out the contents and divide it that way. This is a tough one.
XXXXX was on Topomax for about 4 or 5 months and it was absolutely terrible. She regressed so much it was unbelievable. The doctors kept saying it was the seizures. Finally, my husband and I found several studies that confirmed the cognitive issues and took them to the neuro. We finally got off of it as she did so much better. It works, that's for sure, at least for her, but her quality of life was so poor. Now the doctors are telling us that it is because she was started on it too fast (which she was) and that if it is started really slowly a lot of the side effects can be avoided. We aren't willing to risk it again at this point, but who knows, maybe that’s true. My husband and I had the same thoughts - that eventually they would say it shouldn't be used it kids. It should at least come with a warning.
She is now on Klonopin along with the diet and I've tried to wean this med but was unsuccessful. I will hang on and try the wean again when she is more stable.
XXXXX was on the topomax also and it was horrible for us too AND we started it VERY slowly and slowly built up so I don't think the doctors can use that excuse. I would NOT try it again if I were you. And I agree it should definitely come with a warning!
Topomax is a nasty wean. All weans are worse toward the end cause only part of the drug comes out at first and the rest comes out with times so each wean is really greater than the previous one. Some drugs like valium stay in the system for a year. If you search the archives you will find info on it. We weaned it prediet to go onto zonegran to start the diet. It was the only drug that caused withdrawals for XXXXX. In order to avoid them I used the sprinkles and divided them with a knife on aluminum foil. I divided one cap into MANY doses with a few little sprinkles in each. If you want to know exactly what I did it is in the archives from around last spring. I think I weaned a very tiny amount weekly(maybe biweekly). It did stop the withdrawal seizures.
We weaned quickly but were not on the diet and were starting topomax which is really strong so we had no problems weaning. If you are on the diet it can be a more difficult wean because of the drug/diet interaction. It also takes a few months for the diet to really "kick in" so I would go very slow at first and if you have having good luck you can always speed up. Then towards the end the wean gets difficult because of the accumulated effects of the drug leaving the system. It actually stays in for a long time. . and it is good to slow it down.
XXXXXhad bleeding problems on depakote too. I think nosebleeds and bleeding gums. She was drooling a lot too. Nasty side effects we don't see on the diet.
XXXXX is presently also on phenobarb 15mg am and 30mg pm and clonazapam 2.25mg TID. We will wait for 6-8 weeks after the last dilantin drop and if all is ok we will begin reducing the phenobarb in a similar pattern - 1/2 tablet (7.5mg) at a time using the every other day plan as we did with the dilantin. We have tried to reduce the phenobarb before much quicker and had trouble and almost ended up back in the hosptial.
XXXXX is 3 (turning 4 in June) and has Infantile Spasms. His seizures are considered intractable. Wyatt is completely dependent; he cannot sit, stand, talk or feed himself. He does eat by mouth and still takes a bottle. I need to change that soon too. We have not achieved seizure control, but he has definitely improved over all. He is much more alert and the seizures are not as bad as before. We just finished weaning him off of Keppra 3 weeks ago and I think I have been seeing some rebound seizures due to the wean. I hope to see an improvement with that in a few more weeks. My next goal for him is to wean him off of the phenobarbital. That one scares me because his seizures always go through the roof when we try to wean.
We got to see the pattern of my son's withdrawal behavior and would wait until the behaviors subsided (basically rages, although we had loss of speech and hallucinations also toward the end---we're sort of a worse-case scenario---you'll probably have it much easier!) before making another cut. The withdrawal symptoms were much worse towards the end as my son's body fought a battle to win back this most addictive substance!
XXXXX managed on depakote for about a year but we had to keep raising the dose every time she broke through & then she continued to break through as she became accustomed to the new dose until she got toxic.
My next goal for him is to wean him off of the phenobarbital. That one scares me because his seizures always go through the roof when we try to wean
We too had the greatest control with depakote. The only problems we had was that the amount it took to control his seizures (750 mg) caused his platelets to drop and his appetite to go away completely. He wouldn't eat for days. If it weren't for those problems, we probably would have kept him on the depakote.
We weaned dilantin while on the diet. After almost every decrease, Rose would put both hands in her mouth just like a baby does. This would last for a few days. I can only guess, but I thought perhaps she had decreased sensation because of the dilantin & her mouth was "waking up" She didn't have much speech at the time, so there was nothing to get worse.
XXXX was on the Depakote for 5 years....I hadn't found the list yet so since we had no other options we rode it out. We were mighty confused and thought that the diet was failing for him. But then we started to see the fog lift-Oh what a glorious site.
I think the problems are an increased risk of liver damage which is a side effect of depakote, and that depakote stays in the tissues and causes problems. Maybe kidney stones too. There are other drugs more compatable with the diet. I think maybe phenobarb because the medical side effects are low. The cognitive side effects can be a problem though.
sitting back years later and looking at the experiences of this diet that gives me an insight into my child. Why did Depakote work at first and then become our worst nightmare after being raised and raised till toxic levels? After lowering it no matter what drug we added and what combination things spiraled out of control. What did the Depakote do to my son? Well it caused (and I can say this now from hindsight) a developmental delay-huge of which I now have proof. It caused a fever disorder, impacted bowel, bleeding disorder-we couldn't touch his arms because he would bruise, I could go on and on-but finally it caused INTRACTABLE EPILEPSY. Even the diet-after dropping the Depakote and the Lamictal, the carnatine, the phenol foods and fine tuning to the point of giving him low blood sugar still intractable. But the answer came to me in my son's case. It was liver and pancreatic damage from the Depakote that kept the diet from working. We added the digestive enzymes and whamo after 6 1/2 years my son went seizure free in 5 days.
For what its worth, we're somewhere in the tail end of the lamictal wean, and our daughter went "toxic" twice on lamictal. Her speech was slurred, and she was falling all over. We'd seen it before and confirmed it more or less with the neurologist. It happened at the start of the diet and towards the tail end of the wean. A friend of ours, an adult went toxic on his meds, and ended up in the hospital, before they figured out what was causing things. Same symptoms, only they checked his blood alcohol level several times to make sure he was sober! It could be you are toxic or a side effect of the wean.
Our Neuro absolutely would not start the diet with the Depakote and we were at the point of surgical consult and I just couldn't do it. We had run out of drugs and combinations and then..........they suggested the Diet and I wish I had heard of it before. It made sense for XXXXX because he craved fat. He would take a container of sour cream out of the fridge and eat it-or he would eat the fat off the pork chops as we all gagged. During the first 9 months of the diet-we saw no break in seizures but we did see for the life and he was so awake. But when he went seizure free he started running no more hyperventilation. I actually signed him up for T-Ball. I'm so scared. He has never been able to do any activities prior to this due to his platelets and his hyperventilation.
For what it's worth-our daughter XXXXX has been toxic twice on Lamictal-we went through two fast drops, one 100 mg in a week, the other I think 50 in about ten days. Both were in response to toxicity. It took about 10 days of uglies (serious fogs,drops, gm's, etc) for the change to be noted. New Years day was the first time that she was starting to come back, and then it was this past Thursday that some sign of healing was noticed. Our neuro is afraid she may go toxic again on Zonegram, which is why we may start the wean either tomorrow or next week. XXXXX is/was on three drugs, lamictal, kepra, and zonegram, and has been on the diet now 5 months, with a 3.65 ratio.
Well, I agree w/ what's being said, except when I dropped the morning dose, we saw no change for the worse or better, so my hunch is that depakote isn't working anyway....
Something we do wonder with our med wean is that XXXXXX is also on Keppra, and a toxicity sign for Keppra is supposedly aggression. XXXXX has no way to express aggression, because she has almost no motor control. So we wonder if the rigidity could even be "aggression" as she would be able to express it. After all, for her it is frenetic agitation magnified to the max. Isn't that sometimes what "aggression" is?
Ugh...Dilantin was a nightmare for us! We had to go down so slowly...
http://www.rxlist.com/cgi/generic2/ethosuximide_wcp.htm
Blood dyscrasias, including some with fatal outcome, have been reported to be associated with the use of ethosuximide; therefore, periodic blood counts should be performed. Should signs and/or symptoms of infection (eg, sore throat, fever) develope, blood counts should be considered at that point. Ethosuximide is capable of producing morphological and functional changes in the animal liver. In humans, abnormal liver and renal function studies have been reported.Ethosuximide should be administered with extreme caution to patients with known liver or renal disease. Periodic urinalysis and liver function studies are advised for all patients receiving the drug. Ethosuximide, when used alone in mixed types of epilepsy, may increase the frequency of grand mal seizures in some patients.
We've found that slow reductions, VERY s-l-o-w at the end, work the best........I didn't drop anything quicker than 2 weeks apart.....and saw bad reaction days around day 3-8-11? I can't remember.......depakote (we were on the sprinkles) was a terrible wean for XXXX. He has several scars on his face from sudden myoclonic sz, slamming his face into everything in sight without warning. He put his upper teeth through his lower lip about 1/2 inch below the lip itself, you know? FOUR TIMES in three weeks. It was awful.....but at least he never bit his tongue. I found that it did NOT work with the keto diet at all, dep changes the metabolism so bad (we didn't have any obvious changes until we started to wean.....then WHAMMY.......I had to chase his wean with his ratio......dropping the drug, then dropping the ratio...I was chasing my tail for weeks, it was awful.) But even for people who aren't on the diet, I've heard tell it's a nasty wean a lot of the time. I'd slow down, if you can bear to, and give his body time to adjust.
my daughter has behavioral problems thanks to Tegretol, liver problems thanks to Depakote, lost speech thanks to Topomax and sleep seizures thanks to Lamictal. Pumping chemicals into children isn't right -- it's just that we've been conditioned to always believe what we're told from the docs. Our doc said that none of the four previously mentioned drugs had side effects. He said the diet was too difficult. Wrong on both counts! Just go up there to the Mayo Clinic and tell them that you're there to put your son on the diet. . .don't ask them. . . tell them. Hope I don't sound too harsh...
For those of you contemplating the ketogenic diet, I must say that for us it has been a completely different experience than we expected. Our daughter never got any benefit from seizure meds (Tegretol, Topamax, Diazepam, Keppra, Ativan, Dilantin, or Lamictal), so we were skeptical we'd see much benefit from the diet either. However, her definable seizures are down 80-90% from where we started. For this we are ecstatic!
This is exactly what we've seen on EEG, too. My son, XXX, had his worst seizures while on Keppra. I'm not sure what diagnosis has been given to your daughter, but it seems from other parents that I've spoken with that Keppra doesn't work very well on kids with IS. Ted's seizures improved and stabilized (if you can call it that) at 6-10 clusters per day when we finally weaned him from the Keppra. On the Keppra, his seizures were very violent, and seemed to both cause and be caused by a frenetic hyperactivity. He had his first and most severe tonic-clonic seizure while on Keppra, during which he stopped breathing.
We were afraid to start the diet too-but it has been the best gift we have ever given our son. We too tried all of the meds available and tried he build-up of Lamictal and he got the rash-then we were told that he could have died from it. We decided that never again would we endanger his life to rid him of his seizures. Try to get your hands on the book The Epilepsy Treatment-The Ketogenic Diet written by Dr.Freeman or watch the movie First Do No Harm.
When we were in the ICU after a horrible status episode from Tegretol toxicity, XXXX couldn't stop vomiting. The neuro ordered an in-room EEG and they caught them -- the throwing up episodes were, in fact seizures. The question is -- which comes first. From what I've observed and read about abdominal epilepsy, problems in the gut trigger the seizure reaction in the brain. But the conventional theory is that the brain triggers the problems in the gut. I really don't buy that because I've seen what the meds, etc., have done to her gut and how that's related to an increase in seizures (both the complex partials and the vomiting
we were told by three ped. neurologists that the Keto diet wasn't an option for our daughter. But after going through hell with drug side effects and a horrific reaction to Tegretol.... we found a new neuro who was knowledgeable and experienced with the diet. 18 months later, she is doing well..... med free. She had a seizure recently bringing her grand total to TWO seizures in the past full year. We look forward to beginning to wean her off the diet in about six months to a year. I would just suspect that the docs who told you it wouldn't work for him may not know a lot about the diet and don't believe in it.
I have been surfing the internet to find as much information as possible about the side effects of Tegretol for children specifically. And, I have found no official information. The official information is related to adults who were involved in the studies. I did find on several Tegretol boards via Yahoo and Google comments by parents of children who have been on Tegretol. These are what they had to say (there were some good reports):some people say that their child gets a temper" ---went from a sweet laid back child to being very aggressive, no attention span and moody ---effecting behavior where he was very laid back at home, and at school behavior more aggressive, rude, violent toward peers, hears voices, suicidal ideas ---9 year old with MAJOR mood swings ---4 year old a complete maniac for a year on Tegretol, now on Neurontin and behavior is fine These comments have helped me realize that my daughter, who has been on Tegretol since age 14 months, has been battling against the side effects of Tegretol all these years. She has had to work hard at keeping her hands to herself and staying on task. And, she has a temper which is improving with the Tegretol wean. I really wonder what our special little angel will be like once she has these meds out of her system? I'm am so glad that we are going to be able to give her this gift of a chance to find out.
When XXXXX had her reaction to Tegretol, it was after at least six months of increasing seizures which her neurologist responded to by giving her even more Tegretol. We didn't see any real behavioral side effects but the increase in seizures is a definite side effect..... which everyone ignored! The final side effect for XXXXXX was bright red sores inside her mouth and throat which are the beginnings of a very serious and sometimes fatal reaction. She was weaned very quickly (over just three weeks) and had a 2.5 hr long status incident six days after her last dose.
After she was once again stable (back on phenobarbitol), I did some digging and found out that at that time (1999) there had never been ANY studies done on the use of Tegretol in children under four years old! XXXXXX was put on this drug at 13 months and was 3 yrs old when this reaction happened. I was horrified to say the least! This may be why you haven't been able to find any of the studies on young children...... there aren't any!
What about doing a quick drug wean, starting a new medication and starting the diet at the same time? My daughter will be going into the hospital on the 22nd to wean her current meds (Zarontin & Neurontin) and to start Felbatol. I think this drug will probably fail like all the others. We even tried Felbatol a month ago and XXXXX seizures increased dramatically so we stopped it after 5 days. Her doctor wants to wean her off the other drugs and try the Felbatol again to see if she responds differently to it as a monotherapy instead of with the other 2 drugs. She is going downhill fast. Beginning last week she started having tonic clonics several times a day and sometimes in clusters. She had a terrible reaction to Klonopin so we can't use that drug to break the cycle and her doctor said that Ativan and Valium would have the same adverse effect. So here we are waiting and I have been agonizing over what to do. I really think we should put her on the diet. We tried it 2 yrs ago but only for 3 weeks because XXXXXX quit eating and went downhill. We didn’t go through a keto center and the dietician had very little experience with the diet and I didn't know about the internet support that you have here. Her doctor does use the diet but said that he would like to try the Felbatol by itself first. Is there any reason why we couldn't try both at the same time. I know it is better to be off medications from what I have read here. If anyone could share your > experiences and advice I would so appreciate it. XXXXXX had myoclonic seizures that have turned into tonic clonics, she has some absence and tonics and is losing her already delayed cognitive abilities. I am so frightened.
My name is XXXXX and we live in Auckland New Zealand. I have three sons and XXXXX the youngest (3 in May) has been on the ketogenic diet for one year. XXXXX started having complex partial seizures within the first 24 hours of his life and has been on various, huge amounts of epilepsy drugs. He has been hospitalized approx. 15 times for intractable epilepsy but since last week is completely drug free. XXXXXX is also blind, he was born with an eye condition that caused the retinas to be ripped off the back of his eyes. A condition that was not diagnosed until it was too late to save any vision (probably the cause of such terrible seizures early on). XXXXX is cruising around furniture but is not walking independently yet or speaking. He is globally developmentally delayed but interestingly has started to say Daddy and hello in the last week since his epilepsy drugs have gone. At 12 months he said all the usual - Mumma , Dadda, Bubba, but then we started the many combinations of drugs and all language disappeared until a few days ago. We cannot underestimate the side effects of these drugs. Sorry to digress.
Here is our history:
In February 1996, my daughter had just turned five, was totally normal, and had her first seizure (classic grand mal). Three weeks later another, a few weeks later another. Then, in April, she started having three seizures every eight days. You could set your calendar by it. We are a very non-medical family, but by now we took her to the doctor. We chose not to medicate, believing we would rather deal with the seizures at this point than to have her constantly medicated. Then came the end of May and four days straight of seizures. They were timed like labor in reverse (they were 10 minutes apart, then 20 minutes apart, then 30, eventually an hour, two hours, four hour and eventually ended). At around this time we discovered Klonopin. We used this to stop her serial seizures, which she continued to have. She never just had one seizure. She would have 20 or 30. We would give the Klonopin as needed. Our thoughts at this time were that we would rather give Klonopin once or twice a week rather than medicating every day. Her seizures also changed. She still had grand mals, but also had jerks (myoclonic?) and drop seizures. Some days she seized in one form or another most of the day. The drops were the hardest to handle. She could not go off of the carpeting. When we went out shopping, we had to hold her VERY firmly at all times. When she dropped, it was very hard for even a strong person to keep her off of the floor. These, I thought, were came with the most danger of injury. At least with the grand mals she was protected by the jerking arms and legs. With the drops she would suddenly be flat on her face, and be coming out of it as she hit the floor. These were tough.
By the end of the summer, she was getting Klonopin so often that it no longer made sense not to medicate. She went on Tegretol in September, and had no seizures for five weeks! It was amazing. However, they returned after five weeks. We tried to work with Tegretol for several months, but it never really did the trick. In February of 1997, we switched to Depakote. That took the edge off of the worst of the seizures, but she still had seizure activity most days.
After fooling with Depakote all year, we were looking for a change. My husband did a little investigating and asked the doctor for Dilantin. She started Dilanitin in September of 1997 and NEVER AGAIN had a seizure while awake (with only one exception). Her days were redeemed. She occasionally didn't feel well, especially if she had a rough night, but most days were good. During sleep, whether at night or in a nap, she would still seize.
She has been on Dilantin now for 4 1/2 years. There is always a fine line between the effects of the medicine and the effects of the seizures. (The seizures still being only during sleep). I discovered through my sometimes sloppiness in giving her morning dose, that if she gets less meds, she feels and looks better. Her eyes are brighter, her spirit is better, etc. However, skip a few too many doses and she had too many seizures and then feels bad during the day. Because of this, we started giving her less in the morning and more at night, but with the same total dose.
XXXXX started precocious puberty when she was 7, had been drug free and on the diet 4 yrs at that point. Before the diet, she was on Phenobarbital, then tegretol with 1st dilantin, then with diamox. Now shes 10, 4'7", and rapidly developing...
Can Seizure Meds make Kids go into Puberty Younger?
XXXXXX went into puberty at 10 when they started the meds also. XXXXXX is to put it mildly a very endowed young lady when she started the diet she weighed 107 lbs, 5 ft 2 in tall, 24 inche waist and 38D
Don't know about keppra. But it wouldn't surprise me that this would cause the kids to go into puberty. XXXXXX started on Tegretol at age 7. She immediately started getting pubic hairs. At age 7 for crying out loud. Had a full set by age 8. Don't know if the pediatrician or neuro could do anything for this. Unless you want to change meds.
I'm new to the list and the diet, but I can tell you that Keppra turned my sweet son into an unmanageable whirling dervish. Non-stop frenetic agitation for days on end. I was never so exhausted in my life! Don't know if it can also express itself in rigidity, but I wouldn't be surprised
XXXXXX is just barely 9 1/2. I've noticed that his leg hairs have gotten darker over the last six months, and tonight, when I was giving him a bath, I noticed he's growing pubic hairs. 9 1/2 seems really young.
My daughter was on Kolonopin and Topomax together and drooled like crazy. The front of her shirt would get soaked. The doctor took Rachel off Topomax when we started the diet and no more drooling. She is still on a small amount of Kolonopin but no drooling.
Foggy mind after another hospital stay with XXXXX so I cant remember what you've just weaned, sorry. However, when we weaned lamictal from XXXXXX the wean was quite easy, with just a few small sz extra after each dose drop. But, 10 days after the last dose was given, XXXXXX started having the most severe sz's we'd seen in more than 2 years. Nothing else had changed at the same time so we were convinced they were withdrawal sz and waited it out. It was hard, but I was sure I was right, in spite of neuro wanting to put the drug back into XXXXX's regime. In the end they stopped suddenly after 2.5 months. I'm glad I was patient and for the support from members of this group.
I looked up the side effects of keppra of course like topomax they don't say anything about causing puberty.. but at 5 years old XXXXX had grew an abundance of public hair and her breasts started enlarging
XXXXX is somewhat the same during a medication wean (dilantin) Things go well until he gets used to the reduced level of medication and then his bad behavior and hard time falling asleep starts to creep back in. As soon as we reduce the medication again - things are fine until he gets used to the level again. Wonder how he will be when he is off this medication?
She seems compelled to tense all her muscles to the point of rigidity; while it is definitely not seizure activity (not only is she alert and interactive and tries so hard NOT to tense, but blood chemistry tests show no ionic changes consistent with seizure-induced rigidity), it is completely unlike her baseline self. The rigid episodes have shown improvements with each drop of Lamictal, though they are far from resolved. They creep back in as we get closer to the time to decrease again.
You're lucky the neuro believes in withdrawal seizures. I slowed down the wean toward the end with Topomax which was a terrible wean. I was able to avoid withdrawal seizures that way.
She is still seizing at 11:30 pm and 6:00 am. The one at 11:30 pm is getting shorter down to 23 seconds, but then she seems to fish gape (eyes open close, mouth open close) for a while. Then the one at 6:00 am seems to last about 40 seconds or so, then silence. She is whiney and sometimes I wonder if she is toxic on either the lamictal or the zonegram or the kepra. It's possible I suppose-but after being "normal" seizure free, this is hard to go back to. Our neuro has said "stay the course" and much of what I've read on the web says that you just have to get through this, but oh, its rough, since somehow the whole family gets upset.
Why doesn't someone tell you about the drug side affects when they put the kids on them?
I looked up Trileptal. It said seizure drugs cause hair growth, but didn't say so for Trileptal. Keppra, they wouldn't know of course, because they're doing the study on children right now.
It could be that xxxxxx is ready for another Depakote reduction. I find that xxxxxx stabilizes after a reduction in her Lamictal, then when she has an increase in seizures or insomnia (side effect of Lamictal) I know it is time to reduce again. The diet seems to exaggerate the effects of the meds as they are metabolized differently. Too high a level of meds can cause seizures.
We experience difficulty sleeping at night, extreme irritability, and lack of appetite, drooling, clumsiness and sleepy during the day. It did get better. It took about a week or week and 1/2. HANG IN THERE. xxxxxxx also had the atypical absence seizures and the atonic head drops. I hate those little buggers. When do you find she has the most head nods and when did they start? Just curious. We haven't seen any head nods in a while only the sub clinical stuff here and there.
XXXXXX was on Topamax before starting the keto diet. Did you know it can cause kidney stones? XXXXX was unbearable on Topamax. The teacher wrote a letter to complain to the neurologist. It was the catalyst that put XXXXX on the diet. Thanks for letting me know.
Side effects may include:
Abnormal thinking, aggravation of existing emotional disturbances and phobias, agitation, anemia, angioedema (swelling of face around lips, tongue, and throat, swollen arms and legs, difficulty breathing), allergic reactions (localized swelling, especially of the eyelids, cheeks, or lips, skin redness and inflammation), anxiety, confusion, constipation, decreased breathing, delirium, difficulty sleeping, dizziness, drowsiness, excitement, fainting, fever, hallucinations, headache, increased physical activity and muscle movement, irritability and hyperactivity in children, lack of muscle coordination, low blood pressure, muscle, nerve, or joint pain, especially in people with insomnia, nausea, nervousness, nightmares, psychiatric disturbances, rash, residual drowsiness, restlessness, excitement, and delirium when taken for pain, shallow breathing, sleepiness, slow heartbeat, slowdown of the nervous system, sluggishness, softening of bones, temporary cessation of breathing, vertigo, vomiting
XXXXX looks like she has an allergic rash (skin, especially face is very red and splotchy in fine little points). Seems like I was supposed to watch out for something like this with Phenobarbital?? Naturally its Fri night won't be able to reach doc til Monday. Its definitely an allergic rash, the question is to what?? Her behavior tonight is monstrous...seizure due any day. Holding off on the carnosine til I get this new wrinkle ironed out.
The other thing our neuro said was that it was possible that XXXXX was dealing with an accumulated reaction to all the lamictal drops we've done over the past four months, so that this was not unexpected-except by us! Anyway, thanks for your feedback, we'll see how the night goes. I may post sometime in the late night or try for the morning.
It is a long and difficult road with some weans. I found the lamictal wean to not be too bad while actually doing it. XXXXX would have more seizures each time the dose was reduced, so I just gave up doing the regular dose drop (ie-removing a certain amount each week/2 weeks) and just waited till she stabilized and returned to "normal" seizure numbers, before dropping the dose again. The wean took 3.5 months, rather than the one month at the wean rate that the neuro suggested. I'm glad I did it much slower, as I believe it saved XXXX (and us) the drama of more severe seizures during the wean.
I know many children do well on Topamax, but this drug was a disaster for our daughter. Not only did it increase the frequency, power and severity of her seizures, it also caused her to have constant slurred speech, ataxia, bedwetting, restless sleep, and an inability to finish a sentence, concentrate or learn. She was declining right before our eyes and her seizures were out of control. As we weaned, things got better and better, and the normal XXXXX returned. I would have to say my vote is that the Topamax was probably your culprit! Since being on the diet, XXXXX’s seizures have reduced from hundreds a day, down to 15-25 per day - she's brighter, more alert, and learning new things each day! Good luck!
We too had the greatest control with depakote. The only problems we had was that the amount it took to control his seizures (750 mg) caused his platelets to drop and his appetite to go away completely. He wouldn't eat for days. If it weren't for those problems, we probably would have kept him on the depakote.
My next goal for him is to wean him off of the phenobarbital. That one scares me because his seizures always go through the roof when we try to wean.
XXXX managed on depakote for about a year but we had to keep raising the dose every time she broke through & then she continued to break through as she became accustomed to the new dose until she got toxic.
We got to see the pattern of my son's withdrawal behavior and would wait until the behaviors subsided (basically rages, although we had loss of speech and hallucinations also toward the end---we're sort of a worse-case scenario---you'll probably have it much easier!) before making another cut. The withdrawal symptoms were much worse towards the end as my son's body fought a battle to win back this most addictive substance!
XXXX sounds much like XXXXX was on Topomax. It was the worst time of our lives. She was completely "gone" - and it was like there was no way to reach her. The teachers at school were crying - it was just horrible. We were never on more than one med. Just played musical meds from one to another, until we went on the diet and weaned off Lamictal. So I don't know about how that can go on the diet. But, I've read on this list, that when you wean one, the effects of the other can be more pronounced.
I would call your doc and tell him/her about the nosebleeds etc. Getting platelets too low is very dangerous. It sounds like you have some of the symptoms-maybe its a fluke but I would get it checked. Depakote is notorious for dropping platelets and that’s why they give you carnitor (nasty stuff). If you are coming down on the depakote, it will probably resolve itself but I would be extra cautious with those platelets.
I see the vaccine or mercury damage issue a lot with seizures add adhd and autism or PDD which are all related and all may be really mercury damage-same symptoms. I have joined the mercury list and have had some good advice from chemist Andy Cutler who cured himself and wrote a book about it.
We've only been there once, when XXXXX was toxic on Depakote and had a paradoxical reaction to Valium. It was a nightmare, we couldn't wake her up. So, we didn't really get to know anyone well. The occ. therapist who came to our room was med height, slender build and long brown hair. Very nice. Didn't know there was a gym on the second floor! In retrospect, when she was started on Lamictal initially, she had more seizures with each dose increase. I was told it was normal for this to happen as her body adjusted to the higher dose. . . . . . . now I wonder about that!
The diet has been our savior, in that, even when she was on 3 meds, she was still having at least one seizure a night. When we started the diet, XXXXX went toxic on Lamictal, and the first 21 days of the diet ranged from "wow this thing is working," to "is she going to die." She didn't, we got off of the high dose of Lamictal very, very quickly, and she is mainstream in kindergarten, and looking forward to first grade. We've still got issues, since some days she forgets everything she seemed to know, and don't know why. The diet is a pain in the ____, and my only regret is we didn't do it sooner.
My name is XXXXX and I'm the mother of XXXXXX, age 6, keto since 12/10/01. She has intractable epilepsy, and is on Lamictal (which we are currently weaning), Kepra, and Zonegram. We have achieved seizure control, in that they've stopped, except when she has had strep (once-a very bad thing for kids who have epilepsy), a virus, and foods she shouldn't have. She has been seizure free for about 15 days this month, since she just got over the virus which lasted a week at the end of March.
name is XXXXX, mom to ketokid(since July 01) XXXXXX(7) and XXXXX (14...an awesome sister....a big help). Both our children are adopted. XXXXXX was five weeks old when we got her....at that time she had been having 'breath holding' spells which we later discovered were hardly that...after a second EEG we knew she had seizure disorder due to brain injury, the connotations of which we would only knew as she grew older. At that time she began Depakene which later changed to Depakote which was easier for her stomach. She was developmentally delayed but mastered each stage, walking by age 2 but was weak and had difficulty with balance. Language was also delayed but she was making progress. When she was four she began having real difficulty with falling, a few months later we discovered she was having invisible seizures. She would be standing and baking with me and she'd just fall off of her stool for no reason. Shortly after we found this out, having decided to go on a drug study "Topirimate", she got chicken pox which landed her in the hospital with complications...a severe ear infection and mono.....she was just home from hospital recuperating about three weeks later, she was back on her feet, tottering around walking along furniture, trying to regain her independence when she fell leaving the supper table. We discovered several days later that she must have cracked her femur during this fall, after seizures two days after one another she pulled her femur right apart(we were told she had osteoporosis due to anticonvulsants and the immobility she had experienced the previous few months).....in hospital, casted, sent home, seizured again due to constipation, back in hospital recasted because she had bent the screws....this time a body cast to prevent this happening again...she was immobilized for 11 weeks.....a nightmare...it was horrible. When the cast came off(she had started Topiramate while in cast) she could do NOTHING.....she just lay on the floor immobile.......we thought it was due to being casted for so long........several months later after trying to get her off of this drug......trying other drugs which caused more problems we demanded she be taken off of it cold turkey and back to depakote. Within a month off of this horrible drug she began to regain skills she had lost....she went from only being able to roll to sitting independently...her language started coming back....it was a flower blooming.....like Spring after a long Winter. Another year passed and we still didn't see the XXXXXX we knew before the break so we began asking about the diet. Her seizures were in control but we wanted to see what a difference being off the meds would make for XXXXXX, especially physically. We wanted to give her this chance to get back on her feet and walk again. We realized it was risky because of the osteoporosis but our neurologist assured us that with less meds she would be physically stronger and able to do the weight bearing so critical for building bone density. XXXXXX has done incredibly well.....after three opinions from orthopedic specialists we decided to have the screws out of her hip this past January...unfortunately the surgeon who did it didn't do another x-ray beforehand...if he had he would have seen that her bones have not improved and the screws shouldn't have been taken out.......three weeks ago XXXXXX broke the same hip and we also found out that the other hip is in worse condition...both had to be pinned. After the surgery in January the Dr. reassured us that it was fine for XXXXXX to be back in her walker the next day....which we did but her bones were not able to withstand the activity......BUT XXXXXX is doing very well....she is still in pain. Today we took her for a walk in her wagon and tonight we will pay for that bumpy ride.....but because of the diet and being on half of the meds we started with last July....she is doing amazingly well. We are hoping to get her in for another bone density test soon and also see an endrocologist. I am so thankful for the help I have received from so many of you online....thank you and God bless you and your precious children!!!!!!!!!!
Trust your gut. . .we started very slowly. . .never got up to the full recommended dose. It did stopAnna's seizures, but I think that's because it essentially stopped her brain from working, period. Most of these drugs aren't tested on children – so the impact on a developing brain can be devastating, as opposed to the impact on an adult brain. Glad you're off it it!—
After out horrible experience with topomax our neuro admitted that a high percentage of kids (I think it was at least 20% have such significant cognitive and behavioral regression on Topamax that they have to come off it. I suspect the actual number is a lot higher. My son lost his ability to think and talk coherently. And, if that weren't bad enough, it made his seizures worse and gave him an all-body rash
Phenobarb is an ugly bugger to wean. That's all I know. And I don't think there is anything wrong with the benydryl to help, if it helps. I just had pompous neuro that if it didn't come from him, he made a joke about it, or vetoed it. never should have listened to the ass. he doesn't live with us
Pheno, from the first two times I tried (and didn't know how) gave seizures a month later. One time because we cold turkeyed her. the second time, it came with a fever. 5 yrs later, with neuro's blessing, and 1 month with an idiot er dr for the withdrawal seizure (nightmare). After that, I did try again.....it seemed the withdrawal seizures came every 7 days then. I'd give her skullcap for day 5,6,&7, that stopped the withdrawals until she got to down to 2/3rds of her normal dose. Then I stopped. Went chiropractor route. And ended up with seizures every month thereafter. And even after she was placed on dilantin a yr & half later (the seizure were worse while on the dilantin). Went back to phenobarb after about 2 years, and the rest is just history. Not that good of history either
Ditto to coming with a warning of what it could do to a child taking it.....XXXXX lost a year of her life because of the topomax......I have heard many similar stories of others......it's simply not fair.
She also had problems with Keppra, not outright aggression (well, some- like stepping on her twin brothers), but mostly wild and dramatic mood swings. She goes from a calm, charming little girl, to anguished, distressed crying fits (over, say, getting milk in her sippy instead of juice) and back again within seconds. It's making my head spin, and is wreaking havoc on the family. She was on pretty hefty doses, 4 times a day (!!), but like I said, weaned off quickly and fairly easily.
ANYWAY, reading this group's posts over the past couple weeks has me scared to death about weaning her meds once the diet starts. However, weaning her meds is one of my major goals of starting the diet, as her cognition has been so severely affected by meds. Why is it so tough to wean on the diet??!!?? She's only been diagnosed since Feb '02, but has been quickly weaned off Tegretol, Depakote and now Keppra without any adverse effects (her latest breakthroughs happened before the Keppra wean started). Is it the length of time the med is in the system prior to weaning, or is it the diet, or is it both? She is now on Topamax (100mg in am; 75 in pm) and Lamictal (started March 4th, now on 20mg in am; 25 in pm, increasing 5mg every 4 days). Keppra will be done this Sunday. I'm tempted to not increase her Lamictal any more in anticipation of starting the diet. Any thoughts? I'll obviously make this decision with her neurologist, but am interested in your perspectives. Lamictal and Topamax sound like particularly nasty weans.
I posted recently about my daughter XXXXwho is 3 y/o and on the brink of starting the diet. Well, she's scheduled for May 7th at Hopkins. She was originally scheduled for April 15 as a study patient at Hopkins but that was canceled because she miraculously responded to Topamax and on the day the study began, she had no clinical seizures (awful EEG though). Lo and behold (no surprise) she's breaking through again, so off we go.
I'm so sorry you're seeing this happening. I did wean my daughter off Tegretol but she was on a liquid at the time (pre-Keto diet) and so it was easier to make the cuts. We had to wean very quickly..... completely off in three weeks.... because of a reaction she was having. Still had a status withdrawal seizure that was really NOT fun (4 days in ICU). I hope they can advise you about splitting those tablets. We had tried a time-release type of Tegretol (Carbatrol, I think) at one point.... but it was capsules with tiny beads inside. We had to sprinkle them on food and get them down her quickly. If that was the type you are using, I suppose you could weigh out the contents and divide it that way. This is a tough one.
XXXXX was on Topomax for about 4 or 5 months and it was absolutely terrible. She regressed so much it was unbelievable. The doctors kept saying it was the seizures. Finally, my husband and I found several studies that confirmed the cognitive issues and took them to the neuro. We finally got off of it as she did so much better. It works, that's for sure, at least for her, but her quality of life was so poor. Now the doctors are telling us that it is because she was started on it too fast (which she was) and that if it is started really slowly a lot of the side effects can be avoided. We aren't willing to risk it again at this point, but who knows, maybe that’s true. My husband and I had the same thoughts - that eventually they would say it shouldn't be used it kids. It should at least come with a warning.
She is now on Klonopin along with the diet and I've tried to wean this med but was unsuccessful. I will hang on and try the wean again when she is more stable.
XXXXX was on the topomax also and it was horrible for us too AND we started it VERY slowly and slowly built up so I don't think the doctors can use that excuse. I would NOT try it again if I were you. And I agree it should definitely come with a warning!
Topomax is a nasty wean. All weans are worse toward the end cause only part of the drug comes out at first and the rest comes out with times so each wean is really greater than the previous one. Some drugs like valium stay in the system for a year. If you search the archives you will find info on it. We weaned it prediet to go onto zonegran to start the diet. It was the only drug that caused withdrawals for XXXXX. In order to avoid them I used the sprinkles and divided them with a knife on aluminum foil. I divided one cap into MANY doses with a few little sprinkles in each. If you want to know exactly what I did it is in the archives from around last spring. I think I weaned a very tiny amount weekly(maybe biweekly). It did stop the withdrawal seizures.
We weaned quickly but were not on the diet and were starting topomax which is really strong so we had no problems weaning. If you are on the diet it can be a more difficult wean because of the drug/diet interaction. It also takes a few months for the diet to really "kick in" so I would go very slow at first and if you have having good luck you can always speed up. Then towards the end the wean gets difficult because of the accumulated effects of the drug leaving the system. It actually stays in for a long time. . and it is good to slow it down.
XXXXXhad bleeding problems on depakote too. I think nosebleeds and bleeding gums. She was drooling a lot too. Nasty side effects we don't see on the diet.
XXXXX is presently also on phenobarb 15mg am and 30mg pm and clonazapam 2.25mg TID. We will wait for 6-8 weeks after the last dilantin drop and if all is ok we will begin reducing the phenobarb in a similar pattern - 1/2 tablet (7.5mg) at a time using the every other day plan as we did with the dilantin. We have tried to reduce the phenobarb before much quicker and had trouble and almost ended up back in the hosptial.
XXXXX is 3 (turning 4 in June) and has Infantile Spasms. His seizures are considered intractable. Wyatt is completely dependent; he cannot sit, stand, talk or feed himself. He does eat by mouth and still takes a bottle. I need to change that soon too. We have not achieved seizure control, but he has definitely improved over all. He is much more alert and the seizures are not as bad as before. We just finished weaning him off of Keppra 3 weeks ago and I think I have been seeing some rebound seizures due to the wean. I hope to see an improvement with that in a few more weeks. My next goal for him is to wean him off of the phenobarbital. That one scares me because his seizures always go through the roof when we try to wean.
We got to see the pattern of my son's withdrawal behavior and would wait until the behaviors subsided (basically rages, although we had loss of speech and hallucinations also toward the end---we're sort of a worse-case scenario---you'll probably have it much easier!) before making another cut. The withdrawal symptoms were much worse towards the end as my son's body fought a battle to win back this most addictive substance!
XXXXX managed on depakote for about a year but we had to keep raising the dose every time she broke through & then she continued to break through as she became accustomed to the new dose until she got toxic.
My next goal for him is to wean him off of the phenobarbital. That one scares me because his seizures always go through the roof when we try to wean
We too had the greatest control with depakote. The only problems we had was that the amount it took to control his seizures (750 mg) caused his platelets to drop and his appetite to go away completely. He wouldn't eat for days. If it weren't for those problems, we probably would have kept him on the depakote.
We weaned dilantin while on the diet. After almost every decrease, Rose would put both hands in her mouth just like a baby does. This would last for a few days. I can only guess, but I thought perhaps she had decreased sensation because of the dilantin & her mouth was "waking up" She didn't have much speech at the time, so there was nothing to get worse.
XXXX was on the Depakote for 5 years....I hadn't found the list yet so since we had no other options we rode it out. We were mighty confused and thought that the diet was failing for him. But then we started to see the fog lift-Oh what a glorious site.
I think the problems are an increased risk of liver damage which is a side effect of depakote, and that depakote stays in the tissues and causes problems. Maybe kidney stones too. There are other drugs more compatable with the diet. I think maybe phenobarb because the medical side effects are low. The cognitive side effects can be a problem though.
sitting back years later and looking at the experiences of this diet that gives me an insight into my child. Why did Depakote work at first and then become our worst nightmare after being raised and raised till toxic levels? After lowering it no matter what drug we added and what combination things spiraled out of control. What did the Depakote do to my son? Well it caused (and I can say this now from hindsight) a developmental delay-huge of which I now have proof. It caused a fever disorder, impacted bowel, bleeding disorder-we couldn't touch his arms because he would bruise, I could go on and on-but finally it caused INTRACTABLE EPILEPSY. Even the diet-after dropping the Depakote and the Lamictal, the carnatine, the phenol foods and fine tuning to the point of giving him low blood sugar still intractable. But the answer came to me in my son's case. It was liver and pancreatic damage from the Depakote that kept the diet from working. We added the digestive enzymes and whamo after 6 1/2 years my son went seizure free in 5 days.
For what its worth, we're somewhere in the tail end of the lamictal wean, and our daughter went "toxic" twice on lamictal. Her speech was slurred, and she was falling all over. We'd seen it before and confirmed it more or less with the neurologist. It happened at the start of the diet and towards the tail end of the wean. A friend of ours, an adult went toxic on his meds, and ended up in the hospital, before they figured out what was causing things. Same symptoms, only they checked his blood alcohol level several times to make sure he was sober! It could be you are toxic or a side effect of the wean.
Our Neuro absolutely would not start the diet with the Depakote and we were at the point of surgical consult and I just couldn't do it. We had run out of drugs and combinations and then..........they suggested the Diet and I wish I had heard of it before. It made sense for XXXXX because he craved fat. He would take a container of sour cream out of the fridge and eat it-or he would eat the fat off the pork chops as we all gagged. During the first 9 months of the diet-we saw no break in seizures but we did see for the life and he was so awake. But when he went seizure free he started running no more hyperventilation. I actually signed him up for T-Ball. I'm so scared. He has never been able to do any activities prior to this due to his platelets and his hyperventilation.
For what it's worth-our daughter XXXXX has been toxic twice on Lamictal-we went through two fast drops, one 100 mg in a week, the other I think 50 in about ten days. Both were in response to toxicity. It took about 10 days of uglies (serious fogs,drops, gm's, etc) for the change to be noted. New Years day was the first time that she was starting to come back, and then it was this past Thursday that some sign of healing was noticed. Our neuro is afraid she may go toxic again on Zonegram, which is why we may start the wean either tomorrow or next week. XXXXX is/was on three drugs, lamictal, kepra, and zonegram, and has been on the diet now 5 months, with a 3.65 ratio.
Well, I agree w/ what's being said, except when I dropped the morning dose, we saw no change for the worse or better, so my hunch is that depakote isn't working anyway....
Something we do wonder with our med wean is that XXXXXX is also on Keppra, and a toxicity sign for Keppra is supposedly aggression. XXXXX has no way to express aggression, because she has almost no motor control. So we wonder if the rigidity could even be "aggression" as she would be able to express it. After all, for her it is frenetic agitation magnified to the max. Isn't that sometimes what "aggression" is?
Ugh...Dilantin was a nightmare for us! We had to go down so slowly...
http://www.rxlist.com/cgi/generic2/ethosuximide_wcp.htm
Blood dyscrasias, including some with fatal outcome, have been reported to be associated with the use of ethosuximide; therefore, periodic blood counts should be performed. Should signs and/or symptoms of infection (eg, sore throat, fever) develope, blood counts should be considered at that point. Ethosuximide is capable of producing morphological and functional changes in the animal liver. In humans, abnormal liver and renal function studies have been reported.Ethosuximide should be administered with extreme caution to patients with known liver or renal disease. Periodic urinalysis and liver function studies are advised for all patients receiving the drug. Ethosuximide, when used alone in mixed types of epilepsy, may increase the frequency of grand mal seizures in some patients.
We've found that slow reductions, VERY s-l-o-w at the end, work the best........I didn't drop anything quicker than 2 weeks apart.....and saw bad reaction days around day 3-8-11? I can't remember.......depakote (we were on the sprinkles) was a terrible wean for XXXX. He has several scars on his face from sudden myoclonic sz, slamming his face into everything in sight without warning. He put his upper teeth through his lower lip about 1/2 inch below the lip itself, you know? FOUR TIMES in three weeks. It was awful.....but at least he never bit his tongue. I found that it did NOT work with the keto diet at all, dep changes the metabolism so bad (we didn't have any obvious changes until we started to wean.....then WHAMMY.......I had to chase his wean with his ratio......dropping the drug, then dropping the ratio...I was chasing my tail for weeks, it was awful.) But even for people who aren't on the diet, I've heard tell it's a nasty wean a lot of the time. I'd slow down, if you can bear to, and give his body time to adjust.
