my daughter was diagnosed recently

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Hi all. My name is Denise and I have a 5 year old daughter who had a grand mal seizure in June of this year. We moved to another house and the very next morning she had it. I knew what it was because she had had a febrile seizure when she was 3. We had to call 911 since she had never had another one since the febrile one and didn't really know what to do. Well from the ER we took her to a ped. neurologist and he stated "Clearly the child has epilepsy." My husband and I were totally floored. the ped. neuro immediately put Janae on Trileptal in the morning and evening. We didn't want her on a heavy drug so we sought out another opionion. the other neuro stated that if we wanted to wait to see if the seizures get more frequent then we can put her back on meds. so we started weaning her off. It took about 6 weeks. By the end of July she was off her meds. We also began seeing a nutritionist who was giving her a calcuim lactate supplement 4 times a day. She hadn't had another seizure until the 13 of November. We had to move again. (back to our old house, so it was a familiar place) The very next day at she had a seizure only it wasn't a grand mal. More like an absence seizure where her eyes fluttered and she didn't shake at all. Anyways, these seizures have happened every day since then about twice a day. And only when she wakes up. So in the morning she will probably have one about 30 min. to an hour after she wakes up and at school(preschool) she has one after her nap. They are very minimal(if you can call them that, they are still nerve racking) and not like the one she had back in June of this year. My husband and I truly felt like it was the move and her eating habits had been poor that week of the move. and she also had a ear infection. Well after 17 days of this, my husband and I feel like we have no choice and have started her back on the trileptal. We wanted to see if the seizures would stop before we put her on the meds. NOw we are worried about side effects. Yes she has only been on it for a day but I am still a worried mom. I am still going to take her to the nutritionist because I feel he can still help her through supplements and idiet. I have a question though. Would her seizures get worse if not treated? And are these little 10 second seizures she is having now harming her in any way? I am sorry this post is so long but ANY help would be greatly appreciated. Thank you for listening.
 
Hi Denise, welcome to the forum. :hello:

My initial thought was that your new homes might have been offgassing paint fumes and your daughter could have a chemical sensitivity - but that wouldn't explain the seizures when moving back to your original house (or would it?).
 
The original house (which is where we moved back to is an older home) I know my nutritionist asked the same question. Thank you so much for being very welcoming. We feel so lost with all the information that is out there. So any advice and or help would be great!
 
Hi Denise - I know it is scary when a child is dealing with this. We feel so helpless.
My daughter just turned 16 and she has been having seizures for about 1.5 yrs. I can look back at our journey and say that a lot of the problems happened due to the meds that we have tried.
If I had trusted my instincts I would have followed diet immediately, and hormonal imbalances. There are some good nutritional plans available (check in Bernard's signature under alternatives) Hopefully your nutritionist has heard more than just the Ketogenic/Atkins approach. Allergies to foods are a good start. Eliminating starches and sugar is another.
 
I haven't even considered the ketogenic diet because all that I have read about it is that they have to go off of it and it doesn't appear to be that HEALTHY either, which is why we are seeing the nutritionist. Janae has totally done a 180 in terms of diet. She was never eating a veggie from 2 1/2 years - 4 years old. She would eat like crap and only since she had the grand mal in June have we totally turned her diet around. Granted the only veggie she likes is broccoli...still as least it is one of the good veggies. No she doesn't drink hardly any juice..she has water most of the day. Has anyone ever given their child gatorade to counteract the trileptal as I heard that it lowers the body's sodium level. Are these little seizures that she is having doing damage to her brain?
 
Rest your mind... the answer is No, not for now. You must believe that or you will go crazy. You are doing the best you can with the information that you have today. You must believe it will get better and continue on your steady path to find the answers.

I agree that the Ketogenic is a rather drastic nutritional plan. I chose to follow a basic gluten free, casein free / GARD diet. I have sense decided that MSG and the related byproducts are acting like Excitotoxins on my daughters brain. So obviously I have chosen to eliminate them. Hard at times with a teen.

Rebecca is also on Trileptal, and I have noticed an increase inseizures when I increased the dose. So I have kept her at a lower dose and the seizures were much less this month. I would suggest that you keep a really acurate journal of the types of seizures and what is occuring in her diet daily activities. It might give you a clue as to the reasons this is occuring. Just know that for dietary episodes it can be days after.

Rebecca also was not a big veggie eater. She existed a lot on simple carbs (white flour pastas, bagels, crackers). She was constipated most of her life, and was attracted to sugar. I have at times given Rebecca one of the electrolyte drinks, but I also worry about the amount of sugar in them. My way to counteract the sodium, is to buy good sea salt and use it. I don't worry about giving Rebecca nitrate free organic bacon on occasion, and I just add salt throughout the day. There are other things that the AEDs deplete. Certain vitamins, like vit. D., so I supplement a lot. There are many good vitamins and minerals known to heal the brain, and lower the seizure threshold.
Taurine, Vit B, Vit D, Vit E, magnesium, manganese... to name a few.

I am considering buying a juicer. I have heard that the Jack LaLane at CostCo is a good one. That way I can get essential nutrients into all of us. I also sneak the veggies into pureed soups.

Hang in there, it is a tough road. I am hopeful that you have a support system around you.
 
http://www.epilepsy.com/info/family_kids_education

you might ask about Pediatric Physical Therapy and have some testing done ... my youngest went to physical therapy they test them for speach, motor skills etc.. it might help your worries and give you some ideas of how to work with your child...

having the physical Therpist ,nutritionist & neurologist all commutating together would be a good idea....( its hard for me to answer your question...) my thoughts though are if your worried to try Pediatric Physical Therapy with the others

my son does not have epilepsy that im aware of( he has slight cerebral palsy..).

love
angel
 
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RobinN,
(I have heard that the Jack LaLane at CostCo is a good one)

I was just thinking about that yesterday after watching an infomercial about it on tv....

thinking its an awesome idea....
 
Has anyone ever thought that the vaccinations that children get have something to do with this? No I am not looking for a scapegoat I just like being informed. Janae was vaccinated 1 week before the seizures started happening again. I guess that still wouldn't be the reason why her EEG was abnormal both times by two different ped. neuros back in June.Just wondering though. Also Robin...I saw that your daughter ice skates? Should I be concerned about any activities J might want to get involved in? And also does the AEDs improve the EEG over the long haul?
 
I have thought about this a lot Denise. Dogtor John Symes also has written quite a bit about it. At least he has written about viruses, and what are many of the vaccines but viruses. You might check out Stan Kurtz's website to see what he has to say about vaccines, heavy metals, diet and the like. It is being discussed quite a bit in other neurological groups. All the kids don't come down with the same symptoms. My goodness.... 30 vaccines by the time they are 6 yr old. Comes to reason that it might be the cause of a few problems.
I think of AED's as putting a bandaid on the sore. Or putting a piece of ducktape over the red light on the dash of your car. If you don't take care of the underlying problems, you are going to see additional symptoms added to the fire. That is my opininon.
 
Welcome ~

I probably don't have a lot of advice that will be useful. My DD is 7 and was Dx in October 2004. She was put on Depakota and then Zarontin was added about 6 months afterward. I didn't like the behavior changes and fatigue (a 4 year old shouldn't sleep 18 hours a day!) that came with that. I stopped the Zarontin on my own (bad mommy...) because her Dr. refused to listen to me. She is currently in second grade, doing okay. She is having trouble with comprehension, spelling and mood swings that I so didn't expect til she was 12. She takes Depakote 375 mg 3 times day, and her Neuro is trying to get her to swallow pills so that she can get her on a drug that would work better. I am looking for different routes to help her, but am having issues due to the insurance company and the cost of things other than drugs.

Good Luck!!
 
thanks

Robin...thanks for the article. I actually scrolled down farther to see the effects of a stroke. My dad recently suffered a severe stroke which has left him paralyzed on the left side. He just had a couple of seizures this week and is now in the hospital (again) He is on Keppra and he is definitely having hallucinations and such. I know that Bernard said that Keppra makes people have rage..I don't know..I just know that siince my dad has been on it since last week he has been incredibly sleepy and is seeing things. Thank you so much for your help. I will keep you posted.
 
Welcome Denise!...

I'm sorry to hear your little daughter has seizures. What I'm getting from your posts so far is a very strong fear that she is hurting. What I wanted to tell you is this...I'm 40...I've had grand mal seizures (the big 'Hollywood' kind) for the most part since I was 8 and it seems to hurt the caregivers more than it hurts me! My family when I was growing up...my wife and kids now.

I'm 'out' during the worst of it. I feel bad after but I recover. I won't say our two cases are the same but I'm saying it can look worse than it is at times!

Be strong!
:rock:
 
My daughter is now on day 2 of Trileptal and she has been crying all the time. Can this be a side effect and if so can it happen so soon after she takes this drug? I ask her why is is crying and she says she doesn't know. I literally had to hold her while she was crying (for like 20 minutes last night). As you can see from the time of this post that I can't sleep. I am also scared that if I tell the neuro that she is crying and moody all the time that he will put her on some other meds. Should I be concerned?
 
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How come doctors put people on several aed's at once? Do they all work together or do some work on different areas of the brain? I am so confused by all these meds..I am learning though...thanks to this forum...you all are very supportive and helpful.
 
Don't let them do that. They have since discovered that one is better than many. I mean... just think about it.... has there ever been a study of the variety and recipes that they come up with. They have no problem giving this, but don't have the time of day to suggest some vitamin and mineral therapy.

I think all these drugs are capable of doing anything and everything to a body. Especially a young person. They are tested on adults, and even when they power down the doses who are they to know how that particular drug will react in that unique little body.

www.askapatient.com
 
I'm with Robin, but...

...unfortunately in the early beginnings it's a crap shoot...there is not much history for her to fall back on other than other people's experiences with medications.

It can turn into a 'shotgun approach' if the seizure frequency doesn't respond to drugs or if they aren't concerned enough to pay good attention to your/her case.

Try and stay as calm as possible for her and yourself and look into the things YOU can control (like the vitamins Robin mentioned)...it should settle down!

Peace!
:rock:
 
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oh one other thing. When she is in the car and in her car seat, how should I respond if she has a seizure? Do I stop the car right away?, Do I see what kind it is? She has had one before but it was the fluttering of the eyelids and not much shaking and she came out of it within seconds and then proceeded to sing her songs on the radio right away. I am asking because I normally freak out and pull the car over even if I am in traffic and I don't want to appear scared or freak her out either, not to mention drive like a maniac.
 
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