Absence Seizures....son is being evaluated for it now

[Holly IN]

sigh!

My 14 1/2 is now being evaluated for this. We grew very concerned about several things for the last two weeks. We believe this all started when he was 6-7 yrs old. He is progressivly getting worse. In school (yes at home!!!!!can you believe this?????), and behaviors. He is a very talented boy. He was a genious when he was 2 years old. Now he is flunking almost in everything but yet two of his teachers said he is a very bright kid and extremely smart. :) Great but....He flunks his tests and school work. He zones out a lot.

DH and I looked at the seizures chart. Absence seizures really fit him to a T. Really!! to a T. He can be a poster child for it.

There are so many things I can say on here but it is too much. Several times he will tell me "my brain stopped working and I can't concentrate. Nothing is going in" So much more than this.

Anyway now:
He has a neuor appt this Friday morning and then a MRI appt next Monday (Nov. 16) in the morning. He already got blood work done so we are waiting on that.

Now what I need to hear is:

What do I do at this point? What do I need to ask the neuro? What will they ask of me?

My son told me that if he is having seizures, he wants to be medicated. I am really nervous about this. Our daughter hasn't been diagnosed as having def. seizures but a seizure like activity on her EEG. She is not medicated as we have found a trigger. She is so much better now even though she has HFA. We tried several seizure meds on here and it really backfired on us, BIG TIME!! It was horrible!!!

But this big boy of mine, he wants to be medicated. He truly is tired of his battles with school here at home or outsourced through a group or small group aspect.

Thanks for listening!

Holly

[sheryl]

Holly,Instead of rewriting posts, which take forever, you should search the topic or read the posts. You can search by name Sheryl and you'll read about my posts regarding my 10+ yo dd who has/had absence seizures. Search for Ottakee and there are a few others on the s.n. board that have kids with absence seizures.

My dd was 8 years old when she had a grand mal. Then it developed into absence seizures. She had an mri...normal. Blood work...normal. Eeg showed high activity....not dangerously high, but high/active.

We switched neurol as the first one and I clashed a bit. The practice we've been going to now for almost 2 years is good. She's on zarontin and lamictal that have controlled her seizures and this coming Feb she will be 2 years seizure free!!

Absence seizures is like a neurol hic-cup. It stresses the brain. And, when kids have dozens or hundreds in a day it can EXHAUSt them and they DO FORGET. The processing and memory is comprised with my dd. She too was a mid-A student. She is slightly lower now at low A/high B and that is certainly fine, but I'm showing you there has been a drop.

Now, "activity" flows down the same pathways as "emotions" so it can be common for seizure patients to have behavioral issues. My daughter was recently diagnosed with add, adhd and odd!!! As much as I did NOT want to medicate her, the pros outweighed the cons.

Holly, I can't imagine not medicating at this point. It will save you and your son much stress which is also a "trigger".

HTH. Sheryl <><

[Holly IN]

Thanks Sheryl....I will do the searches under the names you gave me.

:001_smile:

Holly

[betty]

My dd used to have absence siezures. At first she was medicated. The neurologist refused to look for a cause and said she'd be on drugs her whole life. It turns out my dd has celiac disease. The siezures were a result of severe nutritional deficiencies caused by her body not processing food. In other words her brain was starved. Once she was dx celiac we went on the gluten free diet and she hasn't had a seizure since. Before we went gluten free she still had seizures, even while taking meds. The meds somewhat reduced the amount of seizures. My daughter was not showing the standard symptoms of celiac--seizures are a less common symptom. So, there can be many causes for seizure activity and meds are not the solution for all causes.

[sheryl]

Betty, good bit of info. i've heard other people mention the same disorder.

I will say that my dd has been seizure free on meds. She is pre-puberty now so prayerfully she'll continue to do well. She's growing fast.

My dd's drs have always been very encouraged that it looks very likely in time she will be weaned from her seizure meds. Prayerfully that will occur too.

However, I've often wondered if there is a root issue. My wise Aunt before she passed away last year at 84 would say to give my dd whole fat foods to fatten/nourish the brain. My Aunt was a health guru as am I. So, I switched to whole fat: milk, cheese, yogurt, butter....and organic at that. It's pricey, but I save in other areas to help with that added expense.

And, of course red, sockeye alaskan salmon, olive oil, olives, and the list goes on.

Because I was raised by a Mom who was a health nut too (my Aunt's sister) I've always served decent food/meals and even snacks more often than not. But, I missed the book with milk and wonder if that was a deterrent to my dd. I can't stand to think of it....I just don't know

Anyway, more info to add.

Sheryl <><

[asta]

My seizures have been adult onset. Diagnosed, anyway. I can look back and see that I had issues in childhood that probably "laid the groundwork" for the problems I have now, but a head injury at 18 was most likely the "nail in the coffin" so to speak.

I have been on almost every modern convulsant (we didn't try Tegretol, Gabatril, or Zonegran) and also have tried the Atkins diet (there is no evidence for the Ketogenic diet working for adults the way it does in children, but we tried the Atkins, which didn't require a hospitalization). I have used myriad AEDs in different combinations.

So here is my advice:

*Just because one drug doesn't work by itself doesn't mean it won't work in concert with another drug.

*Just because one drug doesn't work by itself doesn't mean it won't work in concert with a dietary change.

*Just because drug A didn't work with drug B doesn't mean drug A won't work with drug C.

*Just because dietary changes had no effect on drug A does not mean that they will have no effect on drug B.

After years and years and years of trying to figure out what combo would work, what possible dietary things could help and hinder, etc. etc. - TODAY we figured out that, on my current combo of medication, I do not have myoclonic jerking, I do not have follow-up migraines, and if I do not have milk or msg, I will not have a doozy seizure outside of ovulation.

My last combo? This did not apply.

Unfortunately, much of neurology is trial and error. But finding an answer is so, so, SO worth it.


a

(*fingers crossed that this holds)

[sheryl]

Asta, you are so knowledgeable. Very good, sound advice!!

[Ottakee]

Meds can really make such a positive effect on the child. It might take time to find the right med/combo of meds/dose, etc. along with any dietary/lifestyle changes but it can be so worth it.

[Momto2Ns]

Great advice from Asta. My ds had absence seizures when he was young. We used medication and were able to eliminate them. It took a few years for the brain waves to settle down and then we were able to take him off meds and have him remain seizure free. This is a best case scenario, but it was our experience. We did have to try 2 drugs and 2 forms of the drug that worked. We had to work to find the right dosage when we found the right drug. There were side effects for the drugs and we worked to find the dosage that would eliminate seizures with minimal side effects. It wasn't all roses, but it was well worth it.

While we didn't work on diet related to seizures specifically, we were working on diet for ASD at the same time. I can't say if the positive outcome had any relationship to dietary changes. We went GFCF, did allergy testing and eliminated several other allergens from his diet and also went mostly organic. None of these are diets recommended for seizures, but I'm sure it didn't hurt that he was becoming healthier overall.