We FINALLY got to see a Pediatric Neuro

iVillage Member
Registered: 01-22-2005
We FINALLY got to see a Pediatric Neuro
6
Tue, 02-06-2007 - 8:24am

CJ (10, AS) started having teeny tiny seizure episodes in mid October. Our Ped. wanted to see a pattern before she'd give us the referral.

So, me being the obstinate person that I am, documented EVERYTHING for 3 months (he also had to have surgery in this time. Mommy can only tackle one issue at a time.)

We got the the Neuro last Thursday, did a partial EEG, kiddo had to pee, so we had to stop. The nurse looked at me when he went into the bathroom and said simply, "bless his baby heart." I asked if he'd had one, she said, "No, honey, he had MANY."

When the doctor came in, she didn't introduce herself, she was looking at the EEG and she said, "His grades are pretty poor right now, aren't they?" Well, um...yeah. She went on to tell me that with the amount of seizure activity there is no way he can comprehend instruction or complete tasks.

I had no idea it was happening that often. I had NO idea. Bad mommy. Bad bad mommy.

He started Zarontin Thursday afternoon and we will increase the dose this Friday, after we get the full EEG done. Note to self: remind the kiddo to pee before the EEG.

But the best part of it all is: he has been holding conversations! He needed much less guidance with homework last night. He actually was able to comprehend the math instruction I was giving him last night! His eyes are bright and engaged. He is smiling real smiles for the first time in I don't know how long. My little boy is back.

DH was devistated. It is especially hard for him because he is in Iraq and can do NOTHING. But my mom came in from out of state to help me with the first EEG appointment and she was able to take notes and aske real questions. I sat there stunned. My parents are flying back into town on Thursday to go with me to the next EEG and to the meeting at school to extend the current IEP.

I'm hoping for an upward trend now. Why is it that things stay stable when DH is home but when he deploys, it all goes you know where in a handbasket?

My Granny called me a mother bear last night. She told me that I am a wonderful mom and that she is proud of me. That helped me so much. It's nice to know that Granny doesn't have any complaints.

Thanks for letting me unload.

Crystal

iVillage Member
Registered: 11-17-2003
Tue, 02-06-2007 - 10:26am

Crystal,

Wow, that must be a relief to finally get answers, albeit rough to hear about the level of seizure activity. DON'T call yourself a bad mother! Are you a neurologist? How would you possibly know about what was going on with him? Sure, there are seizures that there's no doubt about what's going on... but then there are others that come and go - and who could be the wiser?

I'm glad that the meds seem to be regulating it and that things are stabilizing. Please continue to unload here as you need - that's what we're here for! (And if you look at my username, that's from one mamabear to another *wink*) Hugs to you.

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iVillage Member
Registered: 03-26-2003
Tue, 02-06-2007 - 10:48am

Chrystal,

Good for you. I am glad he is going to start feeling and doing better now. Cait made fantastic improvements once we started her on seizure meds. I don't know how many she was having. That was the one time abnormal stuff didn't show on her EEG. If he had to have seizures I am glad they were able to catch them on the EEG. Often they don't. I have a friend from the seizure board who's son has intractable seizures they haven't had good luck stopping. He is in the hospital for a big special EEG and he is sick which is the only time he doesn't have them.

What Symptoms was CJ showing? Seizures take so many different forms.

I am glad he is already doing better.

Renee

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iVillage Member
Registered: 12-22-2003
Tue, 02-06-2007 - 11:29am

(((((Crystal)))))

Wow! Nothing like a shock and a relief all wrapped into one. Here's hoping the meds make all the difference for your son.

You're an awesome mom!

Amy

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iVillage Member
Registered: 01-22-2005
Tue, 02-06-2007 - 12:24pm

It was really strange, at first he just seemed to zone out. His eyes would glaze over and he'd just be out of it for a few seconds. Then in December, his hands started to tremble and then his head began to tremble. Shortly after Christmas, he lost his balance and would have fallen had I not been there.

In mid January, he fell from the top rung on the ladder to the slide at school. He hit the back of his head so hard on the ground that there was a bruise. And the teacher never got up to check on him! She waited until he stood up and she called him over to her! She gave him the choice of going to the nurse or staying on the playground! And I didn't find out until nearly a week later. Needless to say, we're going to have a talk when we meet for the IEP this week. The reason I'm waiting is because I want to confront her with my advocate, the Autism coordinator, the head of Sp.Ed. for the district, the nurse, pricipal and my parents there. I've had it and I'm done being nice.

But his seizures started out very small. He's not had a Grand Mal. And may bever have one, God willing. He has Absence seizures. I just hope they stay that way.

But things are looking up for the first time in a long time. I'm greatful for the break in the chaos.

Crystal

iVillage Member
Registered: 03-20-2003
Tue, 02-06-2007 - 11:33pm

((((Crystal))))


Oh my, what a ride you've been on while your dh is in the big sandbox!

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iVillage Member
Registered: 04-11-2003
Wed, 02-07-2007 - 9:38am

Ok, does anyone else want to slap the Ped.?

I'm glad he's feeling better. And don't feel bad. There is no way you could have known.

Samantha

Samantha