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3 year old with intractable epilepsy

my daughter is 3 yrs old and has been diagnosed with intractable epilepsy. There has not been much luck with medication. She has been on Lamictal, Trileptal and is currently on Topamax. All of the meds have messed with her emotions and temperment. The newest symptom for her is counghing severe at night and snoring. She is not noticing any of this, although she wakes not knowing what is happening. I am not sure if any of this is related to her 'epilepsy' or not. That is why I am here, asking for your input. All of Kelseys neurlogical test have came back perfect. She has had and EEG, MRI, Black Light spot testing, Strob Light test and blood work. All of this is newer to me although we have been fightng the seizures for 14 months. I am praying that her neroligist can find the right meds for her. I am so concerend about her and sleeping at night that I have brought insomnia on for myself. There is some questions that always run through my mind. I moved into my mothers trailer 15 months ago and with in one month kelsey began to have seizures. Kelsey never had seizures prior to this. The other thing is.. Kelsey only has seizures here at home, not anywhere else. Is there a reason for this? Someone please help me ;)

Comments

Re: 3 year old with intractable epilepsy

I know that new carpets and seizures are related for some individuals. My son started having seizures right before he turned 3.   He had intractable seizures for the next few years, including grand mal seizures, jerks, drops, petite mal. sometimes he would have 5 grand mal seizures in one night, sometimes continual petit mal seizures...all day long. he was on 3 meds at a time, tried the ketogenic diet, but nothing seemed to work. Shortly after he turned 5, he began to have fewer siezures, and after about a year he was seizure free and off all meds. He was seizure free for two years when we had new carpets installed in our home. Our son played on the carpets before he went to bed. That night he had a grand mal seizure! We had the carpets pulled out the next day (we stayed in a hotel for a few nights). After the new carpets were removed, our son was fine. It can't be a concidence, especially because after this happened we realized that his seizure disorder began shortly after we had moved into our new construction home....with new carpets and othe new  building materials filled with chemicals. I am absolutely convinced that new carpet exposure can trigger seizures...especially for children who play on them, but likely for adults too.

Re: 3 year old with intractable epilepsy

First off, intractable seizures means, you can not be controlled with meds. You have to take meds still, but will still have some seizures.
I also have intractable seizures. Can be tough to handle at times? You have to find other ways to help your child besides medication.

I know I have done it. We are very tense when we go out and afraid that we will have a seizure. So by the time we get home we are so relax that our bodies just let loose and it comes. I know even when I had parties. I was so tense in getting the party together and worried that when everyone leaves I have one.

Look into the
Modified Atkins Diet
http://www.epilepsy.com/epilepsy/treatment_atkins_diet.html
Neurofeedback
http://www.eegspectrum.com/IntroToNeuro/

take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach1/
http://health.groups.yahoo.com/group/epilepsyapproach/
http://www.sleep-safe.co.uk/id90.htm

Re: 3 year old with intractable epilepsy

My 3 year old son has also developed intractable seizures. We also were on Topomax and saw a big drop in coordination, speech, and personality. We had brief trials with clonazapam and Dilantin. We are now on Depakote and Keppra. Depakote seemed to reduce the quantity but was still having brief generalized seizures. Then he had 4 t/c sz's over 5 days also with a hundred or so small sz's so they added Keppra. We saw personality changed with that as well, but they say to give it more time. If your daughter is coughing and snoring at night, I would suggest you see an allergist and ENT (ear, nose & throat) doc. My other son that doesn't have epilepsy coughed all night every night until we started him on Zyrtec and he quit and seems to sleep so much better. The snoring could be from enlarged adnoids or tonsils. I have read several reputable articles that suggest sleep studies for kids with seizures and snoring - suggesting that inadequate oxygen intake as well as frequent awakenings from the snorning (lack of sleep) can make seizures worse. They even went so far as to suggest that improving nighttime sleep could completely manage some kids' seizures. Also you mentioned about moving into your trailer. I have the same concern for my son because we recently moved into a new modular home that came with a posted warning on delivery that said there were high levels of formaldehyde inside this home that could cause health problems in some individuals. And, formaldehyde is not just in our new home, it's also in the new carpet that was installed in his room and the brand spanking new mattress he sleeps on. I wish I new more if there was a coorelation between the formaldehyde exposure and his seizures. In our case though, my son still has sz's away from home, but it seems not as many.

Re: 3 year old with intractable epilepsy

 "if there was a coorelation between the formaldehyde exposure and his seizures"  My daughter 7 years old diagnosis CP right hemipasia at age 2 , this year we took park models at camping resort for rent  after about one month in this home the grand mold of seisseru happend with her. When i read your's story i just feel that it's could be something not for everybody but for some  people at risk??????????? How did you found out that formaldehyde is in the carpet and matrasse???

Re: 3 year old with intractable epilepsy

  

      There has been a great deal of news coverage about seizures, mostly brought about by the tragic death of John and Kelly Travolta’s son who suffered from a seizure disorder. This along with the recent Newsweek issue with the cove story  highlighting seizure disorders hit me hard.  My son developed a severe seizure disorder when he was about three years old. Although we had no idea then, we are absolutely sure that chemicals in our new carpets triggered his seizures. I hope you are able to hear more of our situation because I want so badly to help make changes that will impact other children and adults in a positive way.

     Our son’s seizures came on quickly and were not well controlled in spite of the multiple anti seizure meds that he was on. We tried the ketogenic diet and took him to Baltimore and Montreal to see if the neurologists there had more answers for us than the doctors at Children’s Hospital in Philadelphia. They didn’t. None could find the root cause of his seizures and none could make them stop coming. Sometimes he would have five grand mal seizures, sometimes petit mal seizures all day—every 15-30 seconds, some drop seizures , some jerks. You name it, he had them. After about two years of this, he had a huge seizure. It lasted longer that any other and I was petrified. Strangely enough, after that he started having fewer seizures ( I guess he burned out some of the mis firing circuits??).until he was seizure free and finally medicine free.

     He was seizure and medication free for two years when we had new carpets installed in two rooms of the house—the play room and our bedroom. That evening, he played in the play room and then came to bed. Since many of his grand mal seizures occurred during the middle of the night, he was still sleeping in our room with us, just in case. Well, that night he had a grand mal seizure. We had a gut feeling that the carpets had something to with it, so we googled carpets and seizures. Information you had posted came up, but so did many others. Needless to say, we had the carpets ripped out the next day (stayed in a hotel for a few days to let the house air out) and replaced the new carpets with wood floors. We then realized that Josh started having seizures when we moved in to our newly constructed home—with new carpets and other new building materials-that were leaching out all kinds of toxic chemicals.

     I am positive, although the medical community might disagree due to lack of concrete evidence, that the chemicals in the new carpets not only set Josh’s seizure disorder in motion, but that it has had similar effects on so many others.

     We need to collectively push for  the elimination of  formaldehyde and other toxic chemicals in our home and work environments so this  seizure trigger becomes a thing of the past.. 

   ,

 

Lisa Kirkpatrick

diamondsurgical@verizon.net

  

Re: 3 year old with intractable epilepsy

I don't know about the rest of the things you were speaking of, but I do know that I only have seizures at home almost without fail. This is due too waking up and having them in the morning or in the evening when going to sleep. Sometimes after a nap. See if there is some daily activity that the seizures surround. Before eating, after waking etc. See if you can find some common pattern.

John