6 year old son has epilepsy...thoughts, ideas?, opinions?

[Lady Edge]

Okay, LONG story but i'll keep it as short as possible. My 6 year old son was diagnosed in March 2009 with Complex Partial seizures because he suddenly started having seizures a few times a week and occasionally 2x a day. They lasted anywhere from 5 minutes to 45 min. We, of course called an ambulance every time and he spent 5 days at Egleston in Atlanta. They did an MRI, an EEG, an EKG and various other X-Rays and blood tests.They could find no cause for the seizures which I guess happens a LOT with epilepsy. Anyway, he was put on Trileptal *3cc/5ml 2xdaily*. His seizures stopped until the end of June when he had two within 12 hours. After those, he was seizure free until November. (Just to add some info; In August, his new teacher suggested I have him tested for ADD because he couldn't focus in school and was having a hard time keeping up educationally because of it. His doctor put him on 5mg of Adderall in the a.m. for 2 months, then increased to Adderall XR10mg-We only gave him that medicine during the week when he had to be at school)

In November his seizures came back. He was having one approx. every other day for about 2 wks, then they started occurring multiple times a day until finally in december, his neurologist suggested we put him into the hospital if he had another one. That same afternoon, he went into a seizure that lasted for 35 minutes so we took him to the ER where they contacted his neurologist and . they gave him Ativan and Keppra (*250 I.v.) At this point, his seizures started happening for about 1-5 minutes, every 5 minutes. He was transferred to Egleston where they continued the Keppra and Ativan. He had a BAD reaction to the Ativan and started hallucinating about skeletons coming out of the wall, etc.. so they quit giving him that, Thank God! His seizures actually stopped during the night though..supposedly..It seemed more like they just started coming in a different form! He seemed almost narcoleptic because he just kept dropping out of consciousness every 5 minutes for about 24 hours. I was told it was the side effects of the Ativan wearing off and that it would stop within a day or so. The next a.m. (while still under the effects of the Ativan) they did another extended EEG, still nothing!

Well, they said they saw a little seizure activity on the right side of his brain but didn't tell me much else. For the next two days we stayed at the hospital because he kept having these strange seizure/narcoleptic episodes. They finally said that it was the Keppra and that it should wear off and we should follow up in 3-4 weeks. Over the next day or so, I realized that during these episodes, he would try to curl into the fetal position, refuses to look toward any source of bright light (even with his eyes squeezed shut) and would become aggressive afterward. My normally sweet, loving child was now saying "Don't touch me!" and trying to hit and bite me! About 2 days after we got home I had to take my daughter to their pediatrician for a check up and my son went with us. His doctor witnessed two of these strange unconscious episodes" and had him taken to Scottish Rite by ambulance. Once there, I was told it was just medication side effects and to take a B6 supplement to counteract the "Keppra Rage"....They did another EEG and sent us home to follow up this week to allow the Keppra time to get into his system and any side effects to subside.

This week, I called. He is still having these odd episodes a couple of times a day. They have increased his Keppra again but he still has them. He is completely unconscious at first but after a few minutes he can hear me but cannot talk, open his eyes or move his body any more than to twitch his fingers or move his head a tiny amount on command. I'm confused by all this! We have withdrawn him from school this week and are now homeschooling him so he will no longer be taking any ADD medicine--I haven't given it to him since the last week of November because he wasn't attending school. Anyone have any thoughts on why his seizures may have changed? His neurologist is okay I guess. She def knows her stuff (even graduated from Johns Hopkins) but should I seek another opinion? I hate not knowing whats wrong with him or if he will grow out of it. I also HATE the fact that he has to just keep taking more and more medicine!! Thoughts? Advice? Opinions?

**His stomach ALWAYS hurts and he feels nauseas before and after a seizure. Could it be an "Aura"?


**He once told me , while crying about it, thta he hears bad words over and over in his head and his brain wants him to say it out loud but his heart knows he shouldn't so he tries not too. **

[Meetz1064]

first. Welcome to CWE. You do seem to have your hands full. I'm Meetz, and I'm happy to meet you. You'll find a plethora of information here. The Library and the Kitchen are great for that, and the Padded Room is great for venting. Mr B has built us an AWESOME home here.

You mentioned, at the end that your son hears words inside his head.....that he wants to say, but doesn't. And you also mentioned that he feels nauseous before and after the seizure.

OK, both things CAN be an aura....which IS a type of seizure itself. However, there is a type of epilepsy (we tend to call it E around here) that sometimes brings on hallucinations or feelings of deja vu.......which maybe what's going on, as well. That is temporal lobe epilepsy.

Now, here is something to consider, and it may not have occurred to you before. His DIET. This does happen quite often with patients that have neurologoical and autoimmune disorders. Autism, ADD/ADHD, epilepsy all fit in that category...and all have been documented to have been helped by changes in their diets. If you look around the forum, you will find plenty of proof regarding that.

In my case, I started out using the GARD diet, because I KNEW I had some sort of problem with wheat, but wasn't sure what. Turns out I was right....I found out in April that I, like quite a few other E patients, am a full-fledged celiac patient. And, I have some serious issues with dairy as well. But once I started using the GARD diet, my seizures were controlled even more than they were before.

Also, E patients are notorious for being deficient in various vitamins and minerals........and quite often in hormones, too. And hormones can set off our seizures. So can lights, stress, sounds, and all sorts of other things, which is why it's important to keep a seizure journal if you're not already.

Don't be afraid to ask for a 2d, 3d or even a 4th opinion. You DO pay the doctor's salary. And they should be more than happy to let you do so....getting a fresh pair of eyes is usually welcomed by any doctor. If not then it's time to doctor shop. Make sure that they're doing regular blood levels too,

Hopefully this helped some. I do hope I didn't confuse you too much.

Take care!

Meetz

[Nakamova]

Hi there, and welcome to CWE!

I agree with what Meetz says above. I would also ask your neurologist about considering a medicine other than Keppra for your son, especially if he doesn't have complete seizure control on it and they keep upping the dose. There are other meds out there that don't affect mood as dramatically and may be a better fit.

[Lady Edge]

Thanks guys. I have been wondering if he may be Gluten intolerant. How do I get him tested for Celiac Disease? Do I just ask his neurologist? Or maybe his regular pediatrician? Is it just a blood test? Any info is appreciated. I'm glad I found this site! I bet everyone on here has felt as alone as I do sometimes. It's nice to know there are others who can give me more ideas and opinions.

[Meetz1064]

actually a blood test for it. I can't remember the name of it right off-hand....RobinN might. Quite often the doctors also like to do a biopsy, for me that was not a possibility, as my neurologist refuses to let me be put under.

What I did, truthfully, was to start pulling gluten containing items from my diet, and then tried to re-introduce them. When I had the most severe reaction that I did, I KNEW, and so did the doctors when I described it to them in detail, what exactly was wrong. Mind you, this takes some time, but.....like I said, it's worth it. Kept a journal, just to show the doctors.

Took everything gluten out, kept it out, and started abiding by the GARD diet. Not easy, but the results were worth it, let me tell you. Control is much better, but I do have to ensure that I get vitamins in the liquid form....and mix them into a protein shake, not only to keep weight on, but to get the bloomin' things in, because they don't taste great.

Ask his pediatrician for the blood test, if they're not willing, they may refer you to an endocrinologist.

And no, you're not alone out there, I promise. It just feels like it sometimes. But now, you have us, and that's a REALLY good thing!

[RobinN]

I agree... I think the elimination diet is the best test. The lab tests are not suppose to be 100% accurate. Some are so sensitive that they can't even tolerate the gluten in mass produced toothpaste. It is a new way of life, once you begin eliminating this, but the health improvements can be great. If there are other symptoms in the family you might realize that it is all connected. The increase of gluten in our diets has grown greatly according to some articles I have read recently.

It is really wonderful not to have to be on medication and to make some of these healthier choices and see such positive results. Instinctively I have known for years that asthma has been related to diet. I have suggested this to friends that have suffered over the years and their symptoms have disappeared.

[Lady Edge]

So where can I find out more information on a gluten free diet? I think i'll do the blood test first and then give the diet a try, even if it comes back negative. This is all so frustrating! The trial and error part, i mean.

[momofevan]

please do not try any diet without consulting your doctor....

[RobinN]

I am going to play devils advocate, only because I am now three years past where I once was

It will be frustrating if you view it as such (been there done that). If you can make an agreement with yourself that you are now in learning mode. This was something that you did not ask for, and you need to take baby steps in order to understand it... be gentle with yourself. I had never heard of celiac when I was thrust onto this new path. I know a lot about it now. I know a lot about my daughters type of seizures too. Been even asked at the ER if I am a nurse. My point is, you will get where you need to be with time and patience. No one should ever doubt your choices, because you are making them with the best intentions. We know your child is your life, and you would never make decisions to put him into harms way knowingly. That is not to say you won't ever make the wrong decision. But learn from the failures and move toward the light. I believe there is a light at the end of the tunnel you find your self in, if you make the choice to never give up.

Blood test is certainly a noble place to begin. When I have questions I check out this site:
www.celiac.com
Just understand that one can be sensitive to gluten but not yet have full blown celiac disease. Celiac they test for wheat I believe, and if you are sensitive to gluten, So a negative test result doesn't mean that the body doesn't react negatively to gluten, casein, soy or corn. (or other foods )

Recommended lab:
https://www.enterolab.com/StaticPage...estToOrder.htm
http://www.celiac.com/gluten-free/in...howtopic=22872


http://www.celiac.com/categories/Cel...dFree-Diet%29/

Quote from the celiac forum:

I recently began going to a holistic physician and she told me that you can be sensitive to gluten and not be a Celiac, but still receive the same symptoms. The reaction is the same, though the actual allergy to wheat is not present, sensitivity to gluten is, but missed by bloodwork. There really is no test that is most definitive when it comes to Celiac according to my research. ELISA was said to be very inaccurate in the past. The best thing to do is just go gluten-free and see how you do.

Did you know that the following groups of individuals have an increased incidence of Celiac disease?

Approximately 1 in 10 relatives of Celiac patients will also have Celiac disease
Approximately 1 in 20 individuals with Type I diabetes will also have Celiac disease
Approximately 5-10% of individuals suffering from anemia will also have Celiac disease
Approximately 10% of European Irish will test positive for Celiac disease

[Lady Edge]

please do not try any diet without consulting your doctor....

I will run the gluten thing by his neurologist and his ped. before taking any more steps in that direction.

[RobinN]

I don't like the word DIET. I prefer to use the term nutritional changes. No reliable, intelligent, trustworthy doctor could disagree with making positive improvements in food choices.

Sometimes a parent (or patient) needs to be proactive in their care or the care of a loved one. Not all conventional medical doctors have proper training in nutrition. They spend more hours being trained on pharmaceuticals, than they do on nutrition.

[momofevan]

I don't like the word DIET. I prefer to use the term nutritional changes. No reliable, intelligent, trustworthy doctor could disagree with making positive improvements in food choices.

Sometimes a parent (or patient) needs to be proactive in their care or the care of a loved one. Not all conventional medical doctors have proper training in nutrition. They spend more hours being trained on pharmaceuticals, than they do on nutrition.

no a doctor wouldn't disagree with positive improvements in food choices...but to just trust a diet plan..(and yes and changes to food or nutrition is called a diet) and a diet plan only is just not safe...

most medications work for people...this diet plan is experimental..and yes if you think about it..it is all trial and error..that is the hard thing about E.

But to go around and basically tell people that doctors are not trustworthy or honest is not what some of us need....and certainly isn't helpful....i am beginning to really see what this forum is all about...its about a few people pushing this crazy diet plan and anti-meds..i am beginning to think this forum is not for me...

Robin you are not a doctor...sorry if you have had bad experiences with doctors in the past...but honestly i just am not comfortable with your all around attitude....the minute i started this forum all you have done was push your opinions on me or have tried to steer me towards being anti-meds....sorry but i trust my son's doctor and i will be following what ever plan she has for his care...

And you can make me feel like i am not "proactive" about my son...but i know i am doing what is best for him...a few of your comments have made me feel like i am not making good decisions for my son...yet again another thing i do not need from anyone..particularly a complete stranger

[BuckeyeFan]

Momofevan,

Please don't be offended by Robin or anyone else here. I am sure that was not her intention. We have talked about this quite a bit over the last 2 years. She has truly found success with one approach and likes to share what she has found with others. You will also see strong support here on the site for Neurofeedback, however these alternatives are not the only choices here.

I am personally relativley well controlled with medications. Robin has always been happy for me. She is glad that they are working well. You will find many people here having success in all of these methods and some others methods. You will also find folks NOT having success. Part of what this site is about is sharing our experiences with each other. From each other, we can hopefully all learn.

Continue to have faith in your doctor, while maintaining that parental eye to make sure you agree with them. Coming here shows to me your desire to find the best for your child. Hopefully, we can aide you in that search and also give you a place to get away when needed.

Don't hesitate to post again.

[momofevan]

thanks buckeye fan...

i am just really frustrated...it is not easy to know that your child has a condition..yes i am lucky to have found such a great nuero team off the bat....i live in pittsburgh and the children's hospital here is the only place in western pennsylvania that treats epilepsy...and i am literally in walking distance from the hospital... i have never had a bad experience with any of the doctors i have ever had to deal with....i just don't feel like i need people telling me not to trust my doctors...

[BuckeyeFan]

Glad to hear you have had good success with the doctors. Pittsburgh has some great hospitals including the University hospital who saved the life of a friend of mine with a very rare transplant procedure.

I certainly understand your frustration. A lot of different things can stress people, but when it somes to our kids, that is pretty much a universal number 1.

Take care.

[Meetz1064]

Please don't misunderstand me, either.

I LOVE the GARD/celiac diet, and it HAS done wonders for me, in terms of seizure control, and a number of other health issues. (I have plenty.)

HOWEVER: I DO take FOUR types of seizure meds (Carbatrol, Lamictal, Topamax, and Klonopin) still, and probably will have to the rest of my life, although I would greatly prefer to control my seizures STRICTLY THROUGH DIET. I have FOUR TYPES OF E, 2 of them diagnosed in the last 12 months. In other words, the doctors are finding more types of E inside my head as time goes on. I was born with tonic clonics, diagnosed with myoclonics 7 or 8 years ago, and now these. So it is unlikely I'll get off the meds.

BUT. AND EVEN ALL EIGHT OF MY DOCTORS SAY THIS. My meds would be much higher IF I weren't on the GARD/celiac diet, to achieve the control that I have.

So PLEASE don't push off other people's suggestions. There's an awful lot of documentation to the GARD (aka as the Gluten Free Casein Free diet used for autism and ADHD patients as well as others). There's also a LOT of testimonies to the GARD.

At the same time, don't feel as if you're being attacked, or pushed around, or out. It's nothing like that. Everyone here is free to state their opinions at this dinner party. OK?

Take care.

Meetz