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
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!
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.
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.
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
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
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
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.
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.
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.
doesn't someone tell you about the drug side affects when they put the kids
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
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.
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.
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
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
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
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
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
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
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
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
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.
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
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
Ugh...Dilantin was a
nightmare for us! We had to go down so slowly...
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.
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