petit mal seizures and memory

[oceandaughter]

Does anyone have any experience with this? It is something we suspect for our son. We see the neurologist at the beginning of June so I don't have much info right now, just that it is a possible reason for the developmental delays we've seen in him. He is six by the way.

[JFS in IL]

YES!!! My son had them - he also was developmentally delayed, and turned out, after an overnight, unmedicated (which can mask stuff) EEG to have abnormal activity in the language portion of the brain. That explained a HUGE delay in language, etc. - everything me might learn during the day he "lost" at night as language could not make the jump from short to long term storage. At least, that is how this lay person understands it. He also turned out to have a large auditory processing delay - everything was treatable with medicine (anti-seizure meds - Depakene/Depakote, and Prednisone).

Since my son's petit mal activity was very short and hard to "catch" during the day, two one-hour, medicated, daytime EEG's by two different doctors failed to find anything treatable. It took a third pediatric neurologist to do the overnight EEG, find abnormal activity, and treat it. The daytime petit mal seizures disappeared, and the nighttime EEG normalized...and my kid developed language. So it is important to make sure you ask for an overnight, unmedicated EEG.

[oceandaughter]

What are the side effects for those drugs? I know someone (an adult) on Depacote and she seems kind of spacey and confused most of the time. (She's bipolar.) I've always wondered if it was an unfortunate drug side effect or if it was just her personality.

Would the seizures cause sensory integration dysfunction symptoms?

Here are some of the delays we've seen (from babyhood on)
1. Walked late (19 months). We are almost certain that is due to a hereditary foot problem that is simply corrected with orthodics. It comes on his dad's side.
2. Talked late. He had words but rarely would string them into sentences. Though he would have moments of lucidity where he would tell you something clear as a bell. Words were late coming, too. But, by age three he had quite a few words, he just didn't use them. Finally at three and a half he began to talk, he started to really talk over the span of a month.
3. Sensory problems: vestibular and auditory. OT helped this a lot and they both don't get too much in the way of daily life except in the area of learning and memory. He is also on a gluten free diet, which really makes a difference in memory.
4. Memory/Learning problems: Weird lapses in memory. Can't recall details of a show he just watched, has trouble remembering what he did during the day. Sometimes he will momentarily forget the name of a favorite toy (like the name we call it by: x-racers for example) or if he or someone else took a bit out of his food. But then he has days where he is very lucid. When he was eating gluten, he would have a spaced out distant look in his eyes a lot of the time and just sort of felt like he was somewhere else most of the time.

I'm really concerned about this! (Understand though that I'm almost 8 months pregnant so I'm a little bit more prone to worry than normally.) We do have (on his dad's side) a family history of autism spectrum disorders.

He is in therapy now: speech and occupational. We are moving to the UK in November and don't know what services we can get there. (I'm looking into it now.) We live in the US now. I imagine we can find some kind of therapy over there, it's just a matter of finding it.

Thanks for your advice, I am really freaked out by this possibility as it sounds so serious. Did the delays basically go away once he started the meds?

[JFS in IL]

My son's pediatric neurologist has just, I mean JUST had a book published that covers everything you ask, and more - in layman's terms (yeah!). I just got my copy yesterday, and have only skim-read it (I need to concentrate and read it thoroughly and write a review for Amazon) but it looks like it would be extremely helpful. It is Autism and its Medical Management, by Michael G. Chez. My son is/ was one of the PDD/NOS kids (according to Easter Seals) later diagnosed by Chez as LKSV - a treatable seizure disorder. He has been on Depakene (the liquid ) and now Depakote (the pill - he can swallow pills - yippee, no more sticky red liquid!) for 11 years. If he goes off he loses his language. He also has benefited from two extended (several months each) times on Prednisone, since in his case Chez suspects an autoimmune problem is underlying the LKSV. On Prednisone my Joe increased his "bodily awareness", potty-trained in one day (finally! Before meds he did not even seem aware he was wet or soiled!) and took off in fine motor skills (drawing and Legos). Anyway - more info is in Chez's book.
Here is a link : http://www.amazon.com/Autism-Its-Medical-Management-Professionals/dp/1843108348/ref=pd_bbs_sr_1?ie=UTF8&s=books&qid=1209752643&sr=8-1

[Ottakee]

My 12dd has severe stuttering and language delays that are MUCH better on Lamictal. I would say that the seizure meds can have side effects but if the doctor does blood tests to get the right dosage (can vary widely depending on how they metabolize it) the side effects can be minimal to none.

Write down ALL of your concerns for you son--even things you don't think will matter as it might help the doctor get the big picture.

Ends up my dd has 3 forms of mitochondrial mutations which leads to seizures, bipolar, learning delays and other health problems. She is still delayed but doing much better now.

[oceandaughter]

What about diet changes? I have heard that there is an anti-seizure diet?

Forgive me if I am asking silly questions. I just know nothing about this.

Are there other options besides medication? Do you know anything about that?

My son has language skills, and really most of my friends don't think there is anything "wrong" with him. I'm constantly hearing stories of late readers and such and while I do believe some kids are later readers naturally and are just fine, there is something up with my child. I just can't place my finger on what it is and I am hoping to find answers. Since beginning speech and OT (second round of OT), there has been some improvement.

Again, I'm not saying there is anything wrong with medication, I'm just wondering if it is the only option or not. I'm probably getting ahead of myself there anyway since we don't have a formal diagnosis, just an appointment. I am going to ask for the unmedicated (although he is on no meds now) eeg at night like you suggested. Anything else I should specifically be on the look out for?

And thanks for taking the time to address this with me.

[JFS in IL]

Do not be afraid to give a med recommended by a qualified doc. - if your child had cancer, would you avoid chemo due to side effects? It it turns out that there is an underlying medically-treatable condition, by all means give a med. or two a trial to see if your son improves. Since my last post I have read more of Dr. Chez's book, and can't recommend it enough. He does address diet, using SLP's and OT's etc. before or in place of medical intervention, etc.

[JFS in IL]

Re: moving to the UK - this link may (or may not) be of use - while your son does not have LKS, these folks will know of the good neuros. etc. in the UK.

http://www.friendsoflks.com/

it is a UK-based groups.

[sheryl]

My dd was diagnosed with petite mal/absence seizures. She turns 9 in a couple of weeks and was diagnosed about this time last year, before turning 8.

What are the symptoms that you notice? Our dd had a grand mal supposedly. Then 2 months went by and the seizure type changed to petite mal or absence seizures (staring spells).

It is where the brain is unconscious for a second to maybe 10-20 seconds and can occur up to several hundred times a day. The child stops and stared then resumes whatever activity there were engaged in. The brain activity leading up to and down from the staring spell multiplied by however many the child is having can be PHYSICALLY EXHAUSTING to the child and can make learning take longer. They can be angry too.

Lamictal (controls behavior) has worked very well and ethosuximide syrup (controls absence seizures).

Hope this helps. Talk with people, be prepared with information to ask questions and MAKE OBSERVATIONS in your child. But, stay calm and peaceful as this will help. Sheryl

[Ottakee]

Diet changes might help. Gluten intolerance or milk allergies can cause children to have focusing issues.

The diet for seizures, the Ketogenic diet, is VERY VERY difficult to do. You have to weigh and measure EVERYTHING that passes their lips--including water, toothpaste, vitamins, etc. They must eat EVERYTHING on the diet list and NOTHING more. Even 1 cracker could cause the diet to fail. It is generally saved for kids who are having 100s of seizures a day and several medications have failed. It also needs to be started in the hospital and then very closely monitored by a dietician and the neurologist. This is NOT a diet you can just "try" at home as there are serious side effects if not watched closely. It is also a very high fat, high protein diet with almost NO carbs at all.

As to the reading, I would seriously look at a program for kids with learning difficulties. I See Sam at www.iseesam.com is the one I use. I buy it from a different source but I don't have my links with me on vacation. Also search this board for my posts on Apples and Pears spelling and Dancing Bears reading. These are wonderful programs designed for struggling kids that are very easy for a parent to use.

There are NO dumb questions. The more you know, the more you can help your child.

[oceandaughter]

Ok.

Honestly I haven't noticed anything exactly like an interruption in what he's doing other than the occasional staring spell (I am prone to staring and spacing out myself).

I'm keeping a list of symptoms and we'll see how the appointment goes.

[sheryl]

Daydreaming staring is "different" than absence staring. Ask the neuro.

[oceandaughter]

I will.

Thanks for all the info, too, everyone. I feel much less panicked now.

[JFS in IL]

Daydreaming staring is "different" than absence staring. Ask the neuro.

Our neuro told us, if we were close enough to our son when we caught him 'staring" to quickly move as if we were going to touch his eyeball. If he blinked or reacted in any way it was NOT a seizure. If we could have touched his eye - it WAS a petit mal, or absence, seizure. Note - do not actually touch the eye!!! Just the motion to do so should trigger an automatic defense response in someone who is NOT having a seizure!

Still - if, like my kid, the seizures are only 3 - 5 seconds long, it can be hard to do this. We told our son's speech and OT therapists what to do - since they were working with him face to face they would be in a position to try this trick quickly. And they did!

[asta]

Our neuro told us, if we were close enough to our son when we caught him 'staring" to quickly move as if we were going to touch his eyeball. If he blinked or reacted in any way it was NOT a seizure. If we could have touched his eye - it WAS a petit mal, or absence, seizure. Note - do not actually touch the eye!!! Just the motion to do so should trigger an automatic defense response in someone who is NOT having a seizure!

Still - if, like my kid, the seizures are only 3 - 5 seconds long, it can be hard to do this. We told our son's speech and OT therapists what to do - since they were working with him face to face they would be in a position to try this trick quickly. And they did!

You have a very wise neuro.

I have absence seizures (I'm an adult). I also have other partial seizures (absence seizures are one type of general seizures).

If your child is potty trained, one thing to check for after you see a staring spell is soiled undies or a "messy fanny". Partial seizures will often lead to an involuntary bowel release or incontinence. It won't often be noticeable externally, if you know what I mean.

As to the original question, about memory issues: my memory has become swiss cheese since my seizures started. The seizures themselves delete the data on the hard drive, and the anti-convulsants delete data. However, when the right dose of AEDs (anti-epileptic drugs) is on board, a kind of stasis occurs, and the brain re-routes neural pathways with amazing efficiency.

The best forum I've found for learning how to navigate neurologists, pediatric specialists, etc. is at the website of www.rettdevil.org. They are kind of "in your face", but they have tons of information about medications and therapies, have kids of their own with neuro issues, and definitely mean well.


asta

[sheryl]

Yes, that's right. It's subtle for most people not to notice the staring spell. However, it became obvious with our daughter. A person can learn to discern the difference. Sometimes there are gutteral noises that accompany an episode. Like an expelling of air. Sometimes the facial muscles relax (not twitching at this point). There are more too numerous to list... But, for the trained eye one can easily perceive these. Hope that helps.


Our neuro told us, if we were close enough to our son when we caught him 'staring" to quickly move as if we were going to touch his eyeball. If he blinked or reacted in any way it was NOT a seizure. If we could have touched his eye - it WAS a petit mal, or absence, seizure. Note - do not actually touch the eye!!! Just the motion to do so should trigger an automatic defense response in someone who is NOT having a seizure!

Still - if, like my kid, the seizures are only 3 - 5 seconds long, it can be hard to do this. We told our son's speech and OT therapists what to do - since they were working with him face to face they would be in a position to try this trick quickly. And they did!