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Old 04-30-2010, 05:55 AM   #1
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Question 4 yr old daughter seizure cant b controlled

My 4 year old daughter has been having seizures since she has been 8 months old. she has been hospitalized numerous amounts of times and has already been on 7 different medications!She has had the same doctor and all they do is try a different med or increase the dosage shes already on. she hasnt had any extra testing besides blood work in over a year. we recentlly have inquired about a 2nd opinion and are now in the process of getting her into another doctor. MY daughter is in preschool for 2 and a half hours a day and 4 out of 5 of those days she either has full blown seizures or a lot of lil absent seizures. We dont know what to do. they have diagnosed her with idiopathic myoclonic epilepsy. Everyday its a different type of seizure and i am not exxagerating when i tell u its almost everyday! Any advise, willing to listen, im really lost?

 
Old 04-30-2010, 06:22 AM   #2
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Re: 4 yr old daughter seizure cant b controlled

mad: I know it's frustrating. I developed seizures due to menopause!!! I can't get them controlled either. Mine are hormonal related. I would suggest 2 things right away. Get her neurotransmitters tested. You might need to see a doctor that "thinks outside the box"; a more holistic doctor. You can also have her toxic and non-toxic elements tested through a hair test. It tests for levels of magnesium, selenium, lead and many more elements. It costs $50. and isn't covered by insurance.

She's probably too young to be playing video games but if she watches alot of TV that could be doing something. EMF's are a culprit for the seizures. Is she around fluorescent lights? Does she eat stuff with MSG? You'd be surprised how many foods have MSG... Salad dressing, crackers, hot dogs, kielbasa, anything with "added flavor".

You can also have her tested for allergies. I was told that I was allergic to milk, tomatoes and sugar!!! I also find that I have seizures if I eat red meat or hot dogs. Why, because the meat is loaded with hormones! My seizures are caused by estrogen dominance.

Another route to take is to take her to an endocrinologist. They will do tests for her adrenal glands and take a different route than a neurologist. If you can find a Neuro-endocrinologist that's even better.

Another thing to test is her blood sugars to make sure she's not hypoglycemic. Low blood sugars can cause seizures sometimes. One of the side effects of this estrogen dominance that I have is HYPOGLYCEMIA!!!! Yes, and the meds I'm on - Keppra - have the same side effects as HYPO TOO!!! It's vicious.

Look up Catamenial Epilepsy on the web and see the side effects. It generally starts at either puberty or menopause but who knows? It could be the cause here.

Another culprit is the FULL MOON!!!! Yes, it's the electro magnetic pull from the earth. It effects me every month. It just passed 2 days ago! Keep track of all the seizures on a calendar and see if there's a pattern of them, especially around the full moon.

Another thing that the neurotransmitter test will reveal is the level of Taurine in the brain. Taurine is reduced by consumption of Aspartame. Does she eat foods with this in it? If so, get rid of them. They're poison! My son is a diabetic and I won't let him have anything with this in it. It's better for him to have regular sugar.

Revisit the fluorescent light issue. Does the preschool have these? It could be a problem. Alot of kids in schools are affected by these because that's what they use in these places.

Another thing to think about is if she has any sensitivities to smells like perfume, cigarettes, smoke from fires, cleaning chemicals, gas fumes, diesel fumes, and noise.
These are all triggers for me these days. These smells all increase the amount of estrogen in the body. Even though she's young these issues could still be causing problems with her hormones.

I'm sure she's had EEG's, MRI's and CT Scans to rule out tumors and other brain problems. Some of these meds they want to prescribe for this just don't work on everyone. I had a rash from Dilantin and couldn't breathe on Trileptal. I'm on Keppra and Phenobarbital right now but they don't control the seizures. I'm also taking Lupron injections and 600 mg of progesterone to try to get my estrogen levels down. The endo told me it could be a year of being on the shots to get the levels down!!!

Sometimes if kids get these seizures at a young age they grow out of them. In the meantime it's frustrating to have to see your child go through this. A friend of mine has a young boy with this and they can't figure him out either.

I've given you enough to think about for now. I don't mean to overwhelm you but I feel your pain and frustration and just want to try to help you. Good luck.

 
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Old 04-30-2010, 10:33 AM   #3
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Re: 4 yr old daughter seizure cant b controlled

Thank u for all of ur thoughts. it put alot of things into my head to ask when we go see the doctor for a second opinion. my daughter used to be on phenobarb n keppra not too long ago we finally just got her weined off of that cuz she was on that for 3 yrs and it can affect the liver really bad so we didnt want her on it any longer and it wasnt doing anything for her. its just so hard to pinpoint what could trigger alot of her seizures cuz she has then anywhere, everywhere, at anytime. but i was thinking the flourescent lights at school too bcuz she has them alomst everyday at school at some point. and also i dont know if itts her age but she seems to have alot of breakdowns like throwing fits one minute and being completly herself the next. she goes thru alot of mood swings thru the day. everyday is a new battle but i dont know if its worth mentioning the the doctor? i mean that could have alot to do with her meds but sometimes its unbareable. the way things r going i dont thinkk that she wil grow out of them. shes my first child and i just dont know what else to do. We want another one but r unsure if this will happen again. doctors say theres onlly a 12 percent chance but we dont know if that would even b fair to the child that we have now. i appreciate all ur input.it feels good to talk to someone about this.

 
Old 04-30-2010, 01:02 PM   #4
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Re: 4 yr old daughter seizure cant b controlled

mad: one other thing that just came to my mind was: ask about a vagus nerve stimulator. It's like a pacemaker for the heart, but it's used to control the vagus nerve. It's something they implant in the body. I opted against it because I knew my issues were hormonal.

Also, have her blood sugars checked to make sure she's not hypoglycemic. Low blood sugars can cause seizures. You don't have to be diabetic to have it.

 
Old 05-01-2010, 11:20 AM   #5
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Re: 4 yr old daughter seizure cant b controlled

See if you can find a pediatric epileptologist in your area. The extra training may help your child better than having the doctor try medication after medication.

I agree with much of what 92261 said. Eliminating possible triggers in your home is a very good thing to try. See if it's allergies or reactions to household items.

Does your child have the seizures or behavioral problems when at home at not in school as well? (such as on break or vacation)

When in middle school, (I know, a long ways away!) I had stress induced headaches due to my school. When I was on break they went away! So changing schools fixed the problem.

I guess I was lucky to have good control from the start with just two medications. Since then I think I have gone through 8 medications, not counting the first two (so a total of 10!).

It could be items (if seizures are reactive from triggers) such as the laundry detergent used, or the soap to bathe with. Chemicals or aroma's are known to be problems. Another thing, is colors or patterns in the rooms. I'm not saying to make everything bland, however IF the seizures are found to be caused by other issues, you then may have to make adjustments.

--Travis

 
Old 05-01-2010, 08:51 PM   #6
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Re: 4 yr old daughter seizure cant b controlled

thanx for ur input anyth suggestions r greatly appreciated!It doesnt seem that household things are triggerring it but who knows really? it happens more at school than at home and it seems to be when shes overactive or overstimulated or overtired that does it so we still make her nap when she gets home from school. In the summer it gets worse because of the weather like it could be heat sensitive or sunsensitive. Mostly when shes overtired or running around and really how fair is it to keep her secluded her whole life she deserves to have anormal childhood and thats all we want for her!! if u have any other suggestions please feel free to reply to me. thank u so much

 
Old 05-01-2010, 08:59 PM   #7
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Re: 4 yr old daughter seizure cant b controlled

about this stimulator thing thats a good idea to bring up to the doctor we go 2 for the 2nd opinion but i also heard of sumthing like that but a chip being implanted behind the ear to sense and stop the seizures. trust me im writing everything everyone says bcuz no question is a stupid question and i just want to get answers. i just want my child to b able to go outside and play or even enjoy school like she does without it being interrupted all the time and i am going to bring up how moody she is. i know shes four and shes gonna test the limits but seriously i dont know of any other four year olds that change moods within seconds over nothing, but thank u so much for all the advise u can and have given. we really appreciate it.

 
Old 05-22-2010, 03:20 PM   #8
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Re: 4 yr old daughter seizure cant b controlled

I understand your anger and fustratshion. I have had a long battle with my own child. would love to share with you the things that worked for my son.541-941-0127 your welcome to call.

 
Old 05-22-2010, 06:16 PM   #9
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Re: 4 yr old daughter seizure cant b controlled

I've been wanting to tell someone this. A couple of years back I had a really bad siezure and I a fell and hit my head. After that I noticed some changes in myself.
1) I enjoyed hearing music more. I kind of felt like I could get inside the music somehow, if that makes sense. I remember thinking in my mind: this is what happens when people get that euphoric look when they are listening to music and I was so glad to be able to experience it myself.
2) My personality changed. I am kind of shy and sometimes a little bit afraid of people (especially strangers). During this time, I was not afraid at all. I was friendlier and smiled more. I laughed more too and was much more relaxed in nearly every situation I was in.
I remember driving down the road thinking "What is wrong with me?" It scared me a little, but I also remember thinking: I hope this feeling never goes away. I was so curious about this thing, I went to a book store and found there that there is a certain kind of seizure (I can't remember which) that actually has that effect on people. Dosteyevsky (sp?) and Schumann, I think had those kind of siezures and actually wanted to experience them more because they were more creative afterwards.
This feeling eventually faded for me, and I have never had a siezure like that again, but have always wanted that feeling to come back. I wish there was a way to recreate it without having a seizure.
Maybe your daughter is having those kinds of seizures. I hope that is the case, but I also hope you find a way to control them. I've found that if I splash cold water on my face, sometimes that will bring me out, before I go all the way in. Also, once I hit my head really hard (because my legs gave out, and I fell) and my seizure went away. I will pray for you and your daughter as I kind of know what you and she are going through.

 
Old 06-03-2010, 07:53 PM   #10
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Re: 4 yr old daughter seizure cant b controlled

First of all I am sorry to hear about your daughter. Second if you are going to get a second opinion make sure you see a specialist, like an epidemiologist (someone that specializes only in seizures, maybe you are already seeing someone like this?). My daughter was diagnosed at 8 years of age with epilepsy and we went to a childrens hospital in the city and have a great doctor now. Do some research first and if you need any help, let me know and I will help you all that I can.

 
Old 07-08-2010, 05:14 PM   #11
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Re: 4 yr old daughter seizure cant b controlled

Hi - have the seizures affected your daughters development? We have never had control of my daughters seizures but I would try the VNS implant. It is quite non invasive.

 
Old 07-10-2010, 11:02 PM   #12
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Re: 4 yr old daughter seizure cant b controlled

Mad: I understand what your going through. My daughter started with fibrile seizures when she was 1 1/2 and afibrile seizures at 3 1/2, although my daughter's are controlled now (she's turning 6 in 3 weeks). I wanted to ask, has your daughter had a seizure study done (several days in a epileptic unit with video monitoring wither her on and then off her meds)? This type of study can really pinpoint the cause of her seizures. My daughter had a + eeg, a - eeg, then a + eeg (in that order), and after she maxed out the dosage of Trileptal (and had to have the dose reduced) they finally did a seizure study. It found a 2nd brain abnormality that the 2 + eeg's didn't catch. since then, they put her on Keppra which so far has controlling her seizures (she has tonic clonic, complex partial, and absence seizures). I'm just suggesting the study bcz i know that the different anticonvulsants works for different types of seizures, and this study can help figure out which medications (or which combo) would work best for her. I was also wondering, have you noticed if your daughter snores a lot, or breathes through her mouth at night? this could be a sign of sleep apnea, which i've been told can cause seizures (my daughter has this as well but her sleep apnea doesn't cause her seizures). Btw, behavior problems, and mood swings can also be symptoms of sleep apnea, as well as problems with paying attention. As far as managing her seizures, has anyone told you about the ketogenic diet? I've read that this a really good diet used for epileptics that helps a lot of people. We personally haven't used it, but you should see if you could get into a nutritionist that can help you design a diet for her. I wish you and your daughter the best of luck!

 
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