New diagnosis for Tigger: generalized epilepsy

[JJJ]

I have always said that Tigger's major meltdowns looked a lot like grand mal seizures to me.

He had another major meltdown and our pediatrician had me drive 45 minutes to a specific children's hospital's ER. It was the best thing ever -- while they did nothing for us that day, they got us into their pediatric neurologist that same week. He got the testing done in 4 days. I think being able to get everything done so quickly helped.

The PedNeuro showed me the EEG -- wow, Tigger was having electrical spikes in his brain every 1-3 minutes while sleeping. They seemed to last from 1-5 seconds. Wow. wow. wow.

He rx Lamictal XR -- technically not approved for under 13 years old but with Tigger being 5'2" and 104 pounds, I guess he thinks he is big enough.

The Lamictal should be taking effect right as the PHP Anxiety program is getting ready to ease Tigger back into school. I'm so hoping that everything is lining up for a reason -- that this is the breakthrough I've been searching for all this time.

My mom is worried that I am getting my hopes up too high but then admitted so is she I don't care, I like hope.

 

[Fran]

Wow. Glad they found it. Amazing isn't it?
Hope is a good thing. It's what gets us from one stepping stone to the next.

 

[hearts and roses]

I believe in hope too! This sounds promising to me also, I hope it is a helpful diagnosis and approach. Hugs~

 

[gcvmom]

You just may see a big turnaround in his behavior once you get the seizures under control! I've got my fingers crossed that Lamictal ends up helping on all levels

 

[Shari]

Wow...I hope this results in improvements for Tigger.

We finally have our second opinion with a neuro this week - made the appointment last spring when previous SpEd Teacher and ais thougth they were seeing seizures. Nothing like being timely....I don't want them to find things "wrong" with my kid, but answers would be good, too.

 

[TeDo]

Good for you!! Glad someone figured out something. Just out of curiosity, what did the meltdowns look like? My difficult child has some doozies and am just curious what Tigger did.

 

[LittleDudesMom]

Hey Triple J,

Hope springs eternal (thank you Alexander Pope)!

Being the president of the Optimist Club, this is my motto!

Great news JJJ. Fingers crossed.

Sharon

 

[tiredmommy]

Hope is a very good thing... it helps to keep you moving forward.

 

[DaisyFace]

Wow! Scary about the electrical spikes - poor kid!

Hopefully this medication will make a HUGE difference!!!

 

[TerryJ2]

WOW! is right!
Best of luck with-the new medications.
Amazing.

 

[TiredSoul]

Good for you!! Glad someone figured out something. Just out of curiosity, what did the meltdowns look like? My difficult child has some doozies and am just curious what Tigger did.

I am curious about this too! So glad you have some answers.

 

[JJJ]

It is really hard to describe.

1. He will complain of feeling nauseous or say he just threw up (even if he didin't)
2. He will have a behavior explosion and not be redirectable -- completely different that his normal self or even his normal meltdown.
3. He will complain of intense head pain.
4. He will go slack and collapse to the floor.
5. His eyes stare at nothing, he has some minor twitching.
6. He falls asleep briefly.
7. He wakes up disorientated, clingy and very tired.

 

[slsh]

JJJ, never *ever* thought I'd say this, but hopefully this will be good news for Tigger. At least you've got something really solid (and definable) to start treating aggressively now.

Boo has grand mal szs (partial complex in neuro speak). Obviously no behavior component, but he absolutely gets an aura before they hit (we call it the Elvis sneer - but it's freakishly reliable - if he's got a one-sided sneer, I'm getting the Diastat out). The nausea sounds like it may be Tigger's aura. Do you think it would be helpful for Tig to work on recognizing his aura and for you guys to come up with a plan? I don't know... lie down at first hint of nausea or thinking he threw up (I always worry about injury in unprotected seizures), warning an adult, and making sure that all adults who might be around him *know* to not ignore his warnings? Hopefully the medications will control and it won't be necessary, but... I'm all about plans, LOL.

Kinda good news, actually.

 

[gcvmom]

I'm no expert, but that sure sounds like a seizure to me, complete with aura and post ictal fatigue. Check out http://www.epilepsy.com -- they have a lot of great information about seizure types and the medications used to treat them. Helped me a lot when husband was first diagnosed with his.

 

[smallworld]

I agree: In a strange sort of way, this diagnosis may help in a lot of ways.

About Lamictal XR: Although the long-acting version may not be approved for children under 13, the short-acting version has been around since 1994 and has been tested and FDA approved for the use of seizures in children ages two and up. So I think you're safe. As you may know, it's also prescribed as a mood stabilizer for the depressive end of the mood spectrum. Lamictal has helped my kids A LOT in the area of emotional reactivity. So you may see a decrease in meltdowns all around.

Hang in there.

 

[barneysmom]

Coming in late. I hope the Lamictal helps your Tig. I read your description of his meltdowns -- they sound very seizure-ish with the aura and post-ictal stages.

I'll be thinking you and Tig and the rest of your group. Onward ho! :~)

Jo

 

[Bunny]

I'm no doctor, but I used to work with a woman whose daughter had a siezure disorder and your description of Tigger's episodes sound exactly like what her daughter went through. This is good news that it was finally diagnosed and that you have the right medication for the right illness. I hope that it helps.

Pam

 

[JJJ]

Thanks all! We are still at the lowest level (25mg) of the titer. He starts the 50mg on Monday. His teacher is being great about easing him back into the school day. Today is day #2 of a 3-hour day. He is off tomorrow and then Monday for 3 hours and Tuesday he jumps to 4.5 hours/day for a week.

The plan is the week he gets to the true dose of 100mg, he'll be back at school full time.

 

[rainyseason]

Congrats on a diagnosis! My son is also 11 and has epilepsy. For him Lamictal was out. He developed SJ syndrome and cant take it. But now we're on Trileptol & Topamax sp? I can say them, can't spell them....LOL It's our last ditch effort. We've been through a few pills for our son. I'm hoping we make some progress this time around. difficult child has had seizures his whole life. His eeg shows them every 3 seconds. But his grand Mals only appear at night. He doesn't have the frame on his bed (less far to fall) & we've been given diastat rectal emergency medications. Any GM lasting more that 3 minutes has to be shut down. Unfortunatly, difficult children cause him to stop breathing. All of his muscles are seizing so badly, that he cant take in air. While the diastat carries risks of resp failure, the GM's are worse, so we tend to weigh each one to see whether or not its needed. Two weeks ago he spent 3 days on the pediatric epilepsy unit. The eeg showed that his current medications are showing an improvement. Keeping fingers crossed to see how long....

 

[Jena]

hey! wow is all i can say and you knew it the whole time what you were seeing. fascinating. your a smart woman! i'm soo glad it was caught! so glad medications will be in place.

((hugs)))