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PaulaScott
10-05-2006, 11:54 PM
Emily's OT called this afternoon that Em had had a seizure during therapy. OT missed the very beginning as she'd turned away for a brief moment, but side that it wasn't more than 10 seconds max, there was no movement, no blinking, no response, and most concerning, she wasn't breathing.

This makes me positively sick because it confirms what I thought I had been seeing, but was trying to convince myself wasn't happening. I thought I saw one episode about a month ago, the aide on the bus saw another that same week and I suspect that I've seen a few more just seconds long. She's also jerking a lot more as she first goes to sleep than she had been.

Sweet Dh was convinced that she was perfectly fine and wanted to talk to the neuro about weaning her from her meds (Topamax and Depekene combo).

These seem to have been gradually increasing in the last couple of months. Em has also grown a lot over the summer, partially because we changed her feedings to Pediasure from the homemade diet we were using because she couldn't tolerate any longer. However, I'm concerned about the Pediasure because of the amount of sugar in it and her increase in yeast infections. And to add to that, she has ringworm.

We have a regular neuro appointment next Tuesday, so I'll talk to him about it then.

I'm sorry for venting, particularly since so many of you deal with far more serious sz than we do, but I feel just sick that we'd thought the sz were gone and they were just hiding.

Denae
10-06-2006, 11:10 AM
:( :( :(

I hate to hear that. Seizures really stink....

((hugs)) to your sweetie.

glad2beadam's mom!
10-06-2006, 12:07 PM
Sorry to hear that about Emily...I HATE seizures!! I hate worrying about them and wondering when the next "big" one will come. Hope Miss Emily and mommy gets some relief soon.

J&K Mom
10-06-2006, 12:54 PM
{{hugs}}
as for the pediasure, Jake has been on it for many a year.... he keeps thrush. So it is a possibility.

wheeliebird
10-06-2006, 01:04 PM
{{{Paula}}} Vent away Hon, you have every right to. I truly believe by venting and pounding these keys on the computer keyboard it cleanses the soul, gets out any built up stress. I'm finding its helping me right now to "pound away"!!!:p Let us know how the Neuro appointment goes, maybe they'll be able to shead some light and give you some ideas for sweet Em!!!

{{{HUGS}}} Hang in there!

Robin

Firewing
10-06-2006, 01:15 PM
I hate siezures, I am sorry. I hope the neuro has some good ideas for you. I don't like the pediasure b/c of the huge weight gain Tehya has had. She is now weighing 35 pounds, she is in 95%(she was in the 40-50%) for her weight. It makes it harder for her to move. Again I am sorry about the siezures.

big sis
10-06-2006, 07:26 PM
i hate seizures soooo much!!!!!! i am sorry

langansmom
10-06-2006, 07:32 PM
No need to apologize for venting about seizures. Any seizure is one too many in my book. And I know how heartbreaking it is to think they are gone only to have them reappear in some other ugly, nasty form. Ugh. I hate seizures.

(((((hugs)))))

mama sue
10-07-2006, 09:21 AM
{{{Paula}}} I'm sorry:(

PaulaScott
10-07-2006, 10:07 AM
Thank you all very much for your support.

I often feel very alone in all this because it is so hard to get Em out and about, between the feeding pump and the KidKart she hates so much that she screams most of the time she's in it. Consequently, the only contact that I have with other SN families is online. Thanks for being here for me.

Mother's Heart
10-07-2006, 12:32 PM
i'm so sorry Paula, Bless little Em's heart!
(((hugs))0

Indyjess
10-08-2006, 03:39 AM
I know how you feel. Our family has dealt with seizures for three of the four years our daughter has been with us. It's discouraging.. it seems that right when her neuro is contemplating weaning her off some meds, she has a terrible seizure week. Last week was particularly horrible, Savanah would have about four-five generalized seizures a day.

I hope that peace comes soon for your family.