I'm tired of these side effects

[Amy]

Dear listers,
My son (9 yr old) is now on valproic acid for the last 25 days. It is helping him from having seizures. BUT the side effects are:
He is s...o distracted at home and school, he cries suddenly with no cause, his language has gone down so much to almost 20% (already he has a language delay) due to his autism, he keeps waking up in the nights atleast once every night (many nights he falls asleep again) & some nights he can't sleep again, he is tired and stretches often, gets frustrated at classroom, he has thrown pencils twice towards chalk board & got benched yesterday for the first time in his ENTIRE LIFE! (He is one of the softest children in the whole wide world!) and he keeps urinating often, he has reduced appetite ........ I think I can keep adding more.

Please advice if I need to wait more before I try a different medicine (lamictal) or is it the high time to switch (or) do you think it is all going to be the same?

Please help! I'm really confused.
Thanks a lot for your support!
Amy

 

[Bee91]

Hi Amy,
I'm pretty sensitive to meds so I usually get all the side effects. I'm sorry your son has gotten some bad side effects. Is this the first med he has tried? I've gone through 4 meds which all but one have stopped my seizures, I had to stop them just because of the side effects. Depakote was one of the ones I had to stop because of side effects. It really did help my seizures. I think it is a tough choice you have to make. Maybe if this is the first med he has tried, there might be another med with less side effects that stops his seizures just as well, if not you could always come back to Depakote. That's what I did with Topamax...
Sorry I'm not much more help...

 

[montse]

It is easy to say, but be patient. It is only some weeks have passed, anyway, ask your doctor.I was with that drug for ten years, but I had not side effects like those, but I think with children it goes different, their brain is very young.

 

[RobinN]

Lamictal isn't advised on those under 16 I think.

Amy - have you seen the information on Stan Kurtz's site for autism (and seizures)?

 

[Amy]

Robin & others: Thank you for all the replies. I highly appreciate it. Robin, actually my neuro gave us lamictal to try for him 1 1/2 months ago & in the meanwhile even before we started he got another seizure & landed in ER that is when ER guys got him started on "valproic acid" thr IV. So, I think lamictal IS ok for kids too.

And sorry I haven't seen Stan Kurts' site. I tried to google, I did find some general links to DAN sites but not the specific one for autism and seizures. Can you pls give me the website if you have?
Thanks a lot again!
Amy

 

[RobinN]

www.stankurtz.com

Serious and sometimes fatal rashes have rarely occurred with the use of Lamictal . The risk of serious rash may be greater in children younger than 16 years old than in adults.
# Caution is advised when using Lamictal in CHILDREN; they may be more sensitive to its effects, especially the risk of serious rash.
#This medicine should be used with extreme caution in CHILDREN younger than 18 years old with bipolar disorder; safety and effectiveness in these children have not been confirmed.

http://www.drugs.com/cdi/lamictal.html

Safety and effectiveness in patients below the age of 16 other than those with Lennox-Gastaut syndrome have not yet been established. Lamictal is contraindicated in patients who have demonstrated hypersensitivity to the drug or its ingredients.

http://www.kidsource.com/kidsource/content4/epilepsy.lamictal.html

Children: Lamictal is used in children primarily for Lennox-Gastaut syndrome. The risk of the side effect of a skin rash is higher in children under 16 than in adults. Sometimes the rashes caused by Lamictal could be very serious or even fatal. This risk must be weighed against the benefits of Lamictal and any rashes should be discussed with a pediatrician. The risk of rash is usually only significant during the first six months of beginning Lamictal therapy.

http://www.whatmeds.com/meds/lamotrigine.html

However, if you are comfortable with your doctors decision then I am sure it is right for your son. My daughter had a bad reaction to it.

 

[brain]

AMY:

First of all, you didn't state how long your
son had been on the medication. There is
a period which is known as a "honeymoon
phase" or "honeymoon period"; where the
body becomes adjusted to the medication
and the medication becomes titrated and
it varies on different people on how long
the side effects lasts.

Some it can take awhile before it goes
away, some side effects are 'tolerable',
and others it goes away quickly; and finally
to others the side effects are severe enough
where the medication has to be titrated off
altogether.

It is strongly recommended to keep a journal,
diary, or a log as when these moods occur,
as some medication(s) - the effects occur
during 'peak periods': and this would help the
Doctor a lot in adjusting the medication and
the dosage or when to take it.

If he had been on it for some time, then it is
possible the dosage may be too 'high' and
needs to be titrated lower -OR- an conjunction
AED needs to be added to balance it all out
during the peak times -OR- the medication
scrapped altogether and a new medication
introduced.

It is a pain as it takes time, patience, and is
a slow process and progress. I've had to under-
go through it all many times; to a point where it's
yadda, yadda, yadda, and it can drive one up
the freaking wall and make you want to pull all
your hair out!

So hang in there, phone the Neuro / Epi, whomever
is treating him, and touch bases and if necessary,
make an appointment!

 

[Bernard]

Stacy was a complete zombie on depakote/Epilim/sodium valproate. Even if it had controlled her seizures, I don't think either of us could have tolerated the severity of the side effects for very long.

 

[RobinN]

I agree.. sometimes you don't need months to know that something isn't going to be acceptable.

 

[Amy]

Thank you again for all your great replies. You guys are the best! Now I know what to do next.
Amy

 

[Axa]

I would say: be patient but not TOO patient.

That's true: "honeymoon effect" really exist; as a consequence of starting taking Neurontin I used to be all blue from bruises. After half a year they disappeared completely.

On the other side your son needn't suffer too long. Since my medicines controlled seizures really good I was afraid to go for a change, even though I was losing weight and had some other nasty side effects. I was also afraid of change since period of change MAY be (this doesn't mean always to be true) nasty too. When I finally decided for a change it was easy and the seizure control is as good as with old medicines. Now I am nearly angry at myself since I virtually throw away three years of my life.

So, at first you should be patient, but not too long.