My Daughter's Seizures

[Married]

I have a couple of questions. My name is Marilyn I have been on here before, but it has been a few months. I went and seen a doctor for my daughter's absence seizures we put her on ethosuximide and she has been on it for about 4 months at 2 ml, she was doing awesome we even had another eeg and she was clear of any sign of seizures so he said keep her at that dose. Well about a week ago our air conditioning went out and it got hot in the house, not extremely hot, but hot about 85f, it went off on the weekend so we decided to wait until Monday to get it fix we had fans and went to Lowe's and bought an air conditioner for the mean time. Anyway, during this time it seemed like my daughter's seizures were coming back. We got our air conditioner fixed, but my daughter is still having episodes. I called the neruologist and they told me to go up a ml. every week until they stop or to just 5 ml which ever is first. I am up to 3 ml. and she is still having them, they are not as frequent as they were but she is still having them. It just doesn't make any sense to me that the medicine worked like a God send for 4 months and now they are back. Any ideas or information would gladly be appreciative. I would also like to know if anyone knows anything about cataplexy and if any one can be misdiagnosed with absence seizures and actually have cataplexy, or if there is a eeg difference in them. Also I would like to know if anyone knows if being upset can be a trigger or very strong emotion or is that only cataplexy, or can my daughter actually have both or is she being treated for the wrong thing. She is 6 and will be 7 in September. The reason I ask is because everytime it seems she has any seizure or episode it is after a strong emotion ecspecially after getting irritated. Thanks for your time and thoughts. Thanks, Marilyn

 

[Nakamova]

Hi Marilyn,

Heat or temperature change can definitely be a seizure trigger for people. (Below are some threads about it).

http://www.coping-with-epilepsy.com/forums/f23/hot-hot-hot-10262/
http://www.coping-with-epilepsy.com/forums/f20/does-weather-affect-seizures-12991/
http://www.coping-with-epilepsy.com/forums/f27/hot-cold-weather-climates-seizure-triggers-6489/
http://www.coping-with-epilepsy.com/forums/f23/overheating-12092/
http://www.coping-with-epilepsy.com/forums/f23/does-heat-affect-e-you-11536/

Stress and emotion can also trigger seizures, but they can also be part of the seizure itself, or a side effect of her meds.

As for cataplexy, it's very rare, and tends to goes hand-in-hand with narcolepsy. It's usually diagnosed by symptom history, not by EEG. The primary symptom involves sudden loss of muscle tone, but consciousness is maintained. The most common emotional triggers are positive -- like laughter -- rather than negative like irritation/anger. In absence seizures consciousness is impaired (usually just for a matter of seconds). The only treatment for cataplexy is anti-depressants, so in the case of children, you'd really want to have a very positive diagnosis before treating.

Especially in kids, it's not uncommon for the dosage to be adjusted upwards, since their metabolism tends to change quite often. If you a re wary of increasing the dose too high, you might want to look into other meds, or possibly the Modified Atkins Diet which has shown a lot of success with absence seizures, especially in children.

 

[Married]

Thanks for your insight it helped a lot. I already tried the MAD diet was very unsuccessful in her case, but thank you for your suggestion. I am not worried about going up on the medicine I just found it strange they she was clear of all seizures with that low dose, and all of a sudden they came back I just found that interesting especially after she was doing so well for about 3 months. I just didn't know how or where they came from all of a sudden again, and now having to go up on the medicine I just find that strange but I am new to all this so, I don't know much. I was wondering if maybe that heat spell brought them back out. Thanks again, Marilyn

 

[momofthree]

Has your daughter had any blood work to see what lever the meds are at in her system? She is growing rapidly and has growth spurts it could be that even though her dose had not changed her body has. We had a similar problem with my son, he was on a steady dose of Keppra, he takes it at the same times every day, he eats at basically the same times every day and he gets his blood work at the same time each time, however in one month the level of medication in his system had dropped by half and as a result started becoming symptomatic again, we actually had to double his does to get back to the same theraputic level. It boggled my mind as well, and scares me to death because you don't know when your child will need more drugs. Thankfully we can test for it periodically and hopefully stay ahead of the curve!!! Good luck, I know how hard it is, my son is 7.5 years old and has grand mal seizures, and apparently his type of epilepsy is rare, but we are new to this game, he has only beed diagnosed for a few months.

 

[hootie]

The same thing happened to my son with Depakote. He would be fine for a few months, some stressor would occur (MRI with sedation, seasonal allergies, etc), and he would have to go up in dose.

He is still having some absence seizures now but when he went up to 6 caps per day, he became irritable, non-compliant, stopped talking and would not do anything (he has autism as well). I think his doc wants to add in another med (Topomax) but I am a little concerned with the side effects.

 

[momofthree]

I am afraid of side effect too, my son takes 600 mls of Keppra each day and he is subject to lots of mood swings and inability to pay attention at times. We are now contemplating an ADHD type drug to counter the Keppra effects. The mood swings are the worst and people around us don't understand, it is hard to a parent a child with a disability you can't see on the outside! I am concerned about putting him on a new med as well, I hate giving my 7 year old so many drugs!

 

[Married]

I know how all of you feel. My daughter gets irritable on her medicine as well. I have been also giving her fish oil and multivitamins and an extra vitamin B6. I tell you it is hard for her to sit still on the medicine alone, but after adding those after a couple of days she seems to be calming down, just a little bit. Anyone that says vitamins are not the answer does not take them like they should. I never thought about her growing affecting the medicine, I can see how that can be a factor ecspecially since my daughter grows like a weed, she is the tallest in her class. I also know how you feel about, feeling alone in this, family members do not even understand. But you are not alone, and that is why I love this forum. It is great for advice, and to know that you are not alone out there is an awesome feeling.

 

[RobinN]

I found that emotions, and hormones have had a huge impact on my daughters seizures. I also agree that the supplements that my daughter takes have also helped with her seizure control. My daughter is med free, so it is easier to witness what is working and what isn't. I have a M.D. Nutritionist that requested that she remain on these meds for a couple of years.

I also have witnessed that her nutrition also plays a role in her emotional state, as it does in her seizure threshold.

 

[paradise survivor]

Yes, emotions play a big part, so does sleep patterns. I was an adult when I was diagnosed but I found hormone fluctuations also had effects. Just to keep things interesting, the meds aslo do strange and unusual things to your moods, sleep and a host of other things. They can also stop working (are we having fun yet?) No one ever said E was boring! Hang in there and keep in touch with the doc. If you don't feel like they are hearing you then change docs. You must be the advocate but you don't have to accept misery--keep workin it:e:

 

[RobinN]

For my daughter, as I said emotions were tied in to it, however, I do believe it had more to do with (my own observations not scientific proof) insulin surges, and a congested liver (due to poor nutritional choices) Perhaps adrenal fatigue too, and a body that seems (from testing) is not able to eliminate toxins well.

A combination of a lot of issues. Helping the body to help itself has been our answer.