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3 year old with seizure disorder and questions

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Posted 5/5/2005 8:04 PM (GMT 0)
Hi!

My name is Terri and I have a 3 year old little girl who has recently been diagnosed with a seizure disorder.  She was diagnosed with Crohn's Disease at age 2, which we are still struggling to keep under control, so this is a real blow.  Her first episode happened when she had a stomach virus.  She seemed to pass out a couple of times and I had no idea she was having seizures. After a 911 call and trip to the hospital, due to passing out, she had an EEG done which indicated these episodes were seizures.  In the weeks since that episode, she has had small seizures here and there where she quietly lays down on the ground (she does this consciously) closes her eyes and you can see her eyes moving around under her lids for several seconds.  She had another abnormal EEG a couple of weeks ago with "generalized" seizures.  We had been watching and waiting with the hopes of avoiding meds, but the past couple of days she has been seizing like crazy.  I am totally freaked out by it and now realize that she needs to be on meds.  Here are my questions:

1)  Providing her GI doc approves these, the neurologist had given the choice between depakote and  lamictal. Does either of these have fewer side effects than the other?  I cannot stand the thought of having my little one on a med with side effects

2)  The neurologist did not think there was any urgency to do an MRI because the pattern in the EEG was "generalized"  Do I need to worry that the seizures could be happening because there is something worse going on?  Should I be pushing for an MRI sooner rather than later?

3)Has anyone ever heard of seizures being caused by a problem with liver enzymes.  Sounds bizarre, but someone once told me they knew a child who had seizures related to a liver problem and when the problem was resolved the seizures went away.  Just curious...

4) I would appreciate any other tips on dealing with this.  I have become an expert on Crohn's and Colitis and am very active on a parents of IBD kids board, however this neurological stuff is foreign to me.  I would appreciate any advice, because , I can deal with the GI problems, but these seizures, seizure meds, etc, terrify me.

Thanks so much for your help!

Terri (Gemma, age 3)

Posted 5/5/2005 8:46 PM (GMT 0)
1) Providing her GI doc approves these, the neurologist had given the choice between depakote and lamictal. Does either of these have fewer side effects than the other? I cannot stand the thought of having my little one on a med with side effects

A. Lamictal seems to have the fewest cognitive side effects. It needs to be started very very slowly to aoid a very serious rash, but if you avoid that it can be a good one to try. Depakote can be a good med for some to gain control, but the side effects can be harsher for some. YOu do not know unless you try a med how it will be for your child. It is so hard, but necessary to find the right med, dose and timing of meds for each person.

2) The neurologist did not think there was any urgency to do an MRI because the pattern in the EEG was "generalized" Do I need to worry that the seizures could be happening because there is something worse going on? Should I be pushing for an MRI sooner rather than later?
A. Focal or partial seizures often stem from a problem that is structural in the brain. A lesion, or structure problem can cause this type of seizures. Generalized seizures are often not caused by this. You can have either type of seizure and a normal MRI. I would ask for an MRI to have a baseline, but do not think it is something you need to push for a fast one...

3)Has anyone ever heard of seizures being caused by a problem with liver enzymes. Sounds bizarre, but someone once told me they knew a child who had seizures related to a liver problem and when the problem was resolved the seizures went away. Just curious...

A.I know there are seizures that stem from metabolic things. This is often something tested early on through blood work. Good to rule out since some meds are worse for kids with these other issues and it is important to start on the best med for seizure type and other problems...

4) I would appreciate any other tips on dealing with this. I have become an expert on Crohn's and Colitis and am very active on a parents of IBD kids board, however this neurological stuff is foreign to me. I would appreciate any advice, because , I can deal with the GI problems, but these seizures, seizure meds, etc, terrify me.

There is a man here, RANMAN who also deals with Colitis. He might offer the most help with that advice.


Glad you found this place. Hope we can offer you help and hope
so sorry your little one has all this going on! SO tough. I am mom to two teens both with Epilepsy.
Posted 5/6/2005 3:17 PM (GMT 0)
Hi Terri-

Welcome to the Epilepsy Forum.  Sorry for the stuff you are going thru with your daughter right now. 

Kayakmom is a regular poster to this board and is a wealth of information and has her own kids with seizure disorders.   I agree that my neurologist also told me lamictal was much better in terms of side effects  and possible complications to the body compared to depakote.  I am told that depakote is hard on the liver and is also associated with weight gain in addition to other problems with side effects.   Does your daugher have any problem with her weight? 

I have been on Lamictal for about 2 years.  Although my neuro told me I would do well on lamictal, I still had side effects of nausea, weight loss, and incoordination.    Luckily, after about 8 months on the med, I was feeling much better.

Hopefully, your neuro will not only give you choices, but give you the rational for the various treatments so you can make an informed decision. 

Good Luck.  Everyone here is supportive. Come back anytime.    Glenda :-)

Posted 5/6/2005 4:20 PM (GMT 0)

Hi Terri,

So sorry to hear what you're going through with your 3 year old.

I hope I can give you some insight but I can only relate it to my own situation. As Kayakmom said, I have epilepsy and Ulcerative Colitis. Both diagnosed around the same time (1979)so I can speak from personal experiene.

It is a documented fact that any type of IBS,UC,CD etc go hand in hand with epilepsy. If a person developes a GI problem either hereditary or otherwise (Doctors don't know the exact cause) They have a very high chanch of getting a seizure disorder or if they develope EP they stand a very high chance of having a GI problem.

This is because there are so many nerves in the GI tract that effect the brain functions and visa/versa.

Does the Doctor know he's treating more than one condition? If so maybe lamictal or depakote is not the right choice.

RE:Meds. The neurologist and GI Doctor have to work together on this to ensure she gets the right balance of meds that will work together, It's like walking a tight rope.

Some of the GI meds paint a protective coating on the lining of the bowel and intastines. This makes it harder for the epilepsy meds to penetrate and get into the blood stream and as a result, your blood level may show a level below the theraputic level and therefore your neurologist may increase the doseage.

By increasing the doseage, the meds COULD become toxic in the system and that's when she'll have problems with co-ordination, slurred speech, poor short term memory to name a few. It's like walking a tight rope.

In my opinion, don't worry about the side effects at this point. Get the two conditions under control, that should be the first priority. Once it's under manageable control, then speak to the Doc about the side effects.

Speak to your Doctor before you do anything.

Randy

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