DownSyn Forum

cmora1 · Posted: July 26 2012, 2:40 PM Post subject: behaviors and infantile spasm

Hi
I was wondering if any of your children that had infantile spasm when they were young have Now difficults behaviors ?

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www.ceciliaytarek.blogspot.com

TracyR · Posted: July 26 2012, 2:46 PM Post subject:

Thankfully I do not know about this from personal experience but I think I have read that this does happen? Hopefully someone who knows will answer, but I wish you much luck with Tarek and hope you are staying sane with whatever he is putting you through...he looks like a real cutie in the pictures though!!

LinMac · Posted: July 26 2012, 4:30 PM Post subject:

Hi ya!

I have no experience of IS so I can't answer your question.
Your son is adorable.....I love him singing the morning song!

Hope you get some answers!

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Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 9 - DS)

First Communion Day

QuinnsMom · Posted: July 27 2012, 4:01 AM Post subject:

There was a short period of time that Quinn was doing stereotyical repeated movements (or at least got dx with this), otherwise no - I wouldn't say they have been difficult behaviors.

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Karyn, Quinn's Mom -
Mother of Riley (age eleven), Aidan (age seven) and Quinn (October, 2007 - DS, IS, Stereotypical Movement Disorder)
http://quinnscrusaders.blogspot.com/

momlorac · Posted: July 27 2012, 11:48 AM Post subject:

Most of the times Abby is fine a few times she doesn't always listen. The last few days of camp she has not been that good. She does wonder in camp at times.but they let her and somrone just follows her.

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Carol mom to Adam 6/17/96 ,Emily 8/7/98, Abigail (DS)8/16/04

cmora1 · Posted: July 27 2012, 1:37 PM Post subject:

Thanks.
Is just I'm trying to find some answers to his behaviors. We had been to soooooooo many doctors and things get betters for weeks and later his behaviors are not so good and then good again, it is kind of been in a carrusel. We are going for another behavior evaluation on the 30th and the same week for a EEG to amke sure he is not having seizures. Sometimes I think his behaviors are consequences of the ACTH or damage due his seizures.
But for sure when he is on "those" weeks things can get very tough Sad

and later he can be so sweet Smile

for weeks again.
Hope I can find more answers soon.

_________________

www.ceciliaytarek.blogspot.com

QuinnsMom · Posted: July 27 2012, 9:29 PM Post subject:

Hope you find an answer - and the answer is a good one. Hugs. Seizures suck.

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Karyn, Quinn's Mom -
Mother of Riley (age eleven), Aidan (age seven) and Quinn (October, 2007 - DS, IS, Stereotypical Movement Disorder)
http://quinnscrusaders.blogspot.com/

RileysDad · Posted: August 08 2012, 11:46 AM Post subject:

My son is now about 34 months old and is on his second diagnosis of IS.
His first was at 11 months of age and it was treated with ACTH and he responded to the treatment (side affects were horrible). then this February at 28 months he was diagnosed with IS again. He was treated with a high steroid dose and then (and is still on) Vigabatrin. Actually, we head for an eye test next week.

As of now we have not seen any noticable behavioral issues, but he also just had tonsils and adenoids outa few weeks back so it's hard to tell.
He will start Pre-K at the end of this month, so we have our fingers crossed. I have wondered a lot about the effects of both the IS and the medications used to treat it an I hope that there are no long term effects on his behavior or physical health.

I hope that the things that you are seeing can be explained and/or treated in some other way.

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Jared
Dad to
Austin (4 years) and Riley (2-1/2 years, DS)

cmora1 · Posted: August 12 2012, 12:27 PM Post subject:

Thanks for all your comments
tarek behaviors started to change maybe 5 years ago ( he is now 10) . It comes in waves, so it is not all the same everyday what it make it complicated to figure it out. He will have an EEg next wednesday, our first attemp was not accomplished because it required not sleeping prior the test for 24 hours and he did fall asleep early Sad

But I have to say that his behaviors did change for good after her doctor in his second mental health evaluation change the doses of his medications ( Miralax, Celexa and vitamin D). By the end of the month he will have his dentist and cardiologyst appointment, so we can make sure there is not hidden issues in those areas that make his behaviors change.
Thanks again for your comments.
Cecilia.

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www.ceciliaytarek.blogspot.com