Need Advice-Really long-Sorry

iVillage Member
Registered: 02-03-2007
Need Advice-Really long-Sorry
3
Mon, 04-23-2007 - 1:04pm

Hi All,


I have been lurking for a couple of weeks, & have a long, twisty story with a question. I apologize that this is so darn long, but I think you need the background before I can be pointed in the right direction.


Here Goes…


I have 5 kids: the youngest, Kallie, is 7 & was born with a cleft lip & palate. She has had 7 major surgeries & 2 minor ones to date, with at least a couple more big ones still to go. This is relevant because she has had MAJOR speech issues, (as in she wasn’t physically able to make most sounds until about age 3). Or so we thought. She has been in speech therapy since age 2 ½.

kids
iVillage Member
Registered: 11-15-2006
Mon, 04-23-2007 - 3:59pm

I would suggest a dx, if she isn't on the spectrum, it will do no harm, is she is, she is missing valuable intervention time.

- Christina mom to-

Chloe (10)    Aiden(8)   

iVillage Member
Registered: 07-12-2005
Mon, 04-23-2007 - 6:16pm

Hi Paula, and welcome to the board!

It sounds to me like Katie has something going on other than just the cleft. Whether or not it's autism I couldn't even begin to say. You've listed things that can be atributed to either ASDs or other things. But the withdrawl, which is very distinctly autism, sticks out to me.

It can be really hard trying to figure out 'what else' is going on with a child born with any kind of birth defect or abnormality. I have 6 kids, and 2 were born with 'issues' very different from each other. The first is my 12yo DD Jade, who was born 8 1/2 weeks premature. She wasn't expected to live at all, because she was born with lv 4 RDD (respritory distress disorder... lungs hadn't fully formed). She was given 6 hours to live... 6 weeks later she was dx'd with CP, upgraded to lv 2 RDD, and and transfered to in-home care. She didn't speak until she was 4yo, and the drs said it was because of her birth defects. My mom and I, along with our family dr (who no other dr would listen too) thought she seemed 'a bit autistic too'. It took another 3 years and getting married to a kick-ut man who wouldn't hear any flim flamble from the drs, but she was dx'd with severe Infantile Autism when she was 7yo. She still has some CP issues, but they are mimor compared to her autism and I look back now and think "how could they not see it?". Jade also has TS, and MMLD, but she's atually come a long way. Most of our new neigbors (we moved here 18 mo ago) don't believe that she had anywhere near such a rocky start, until they see the photo albums. Even then, it's hard to attach that little whisp hooked up to all those machines to the strong young lady we see today.

My other DD born with birth problems is my younest, Angel (4yo). She was born with Policy's Syndrome, which is a rare neuro-orthopedic disorder that causes the joints and nerves in the legs and feet to distort and undergo progressive onset mutations. She's bright and lively, and very NT, but she still can't walk and may never be able to. But when she was 2yo there was a lot of concern over strange sensory issues she was having adn the reactions she was having to them. She would have panic attacks over the sound of the blender, even if she was in the other room. The tub (the drains in our old house were LOUD) made her hyperventalate. A flash, like from a camera, made her act like she'd been shot. She refused to go outside. Insisted on having really dark sunglasses in the car or at the dr's. Our family ped started the eval for autism but halfway through that she underwent yet another surgery on her legs, this one involving litterally moving the siatic nerves in her legs (not much, just 6 ml). The sensory problems went away immediately. After lots of testing by several different drs it was determined that she was having a chronic reverb in her nervous system (like some people get after having a spinal tap) and it was causing problems in the perception centers in her brain.

I would say get the eval. To get it started talk to your ped. If you don't get any help from him/her and you live in a more metropolitan area you can try seeing if the local university has an autism or developmental growth center.

Anyhoo, I've been informed that a tragedy has happened (someone littered at the park) and I must go take care of it (broken glass).

Again, welcome to the board. Sorry if my response wasn't all that clear.

~Candes

APOV on Autism

iVillage Member
Registered: 06-25-2003
Mon, 04-23-2007 - 10:05pm

Hello Paula, (great name, BTW -My compliments to your parents! )


My thoughts were the same as Candes: It does sound like there could be something more going on, but in her case it might be difficult to tease out what it could be.


My best advice to you is to have Kallie undergo a

-Paula

visit my blog at www.onesickmother.com