View Full Version : Elizabeth has been Diagnosed


Lafnalot
05-27-06, 10:05 AM
My nine year old Elizabeth has been diagnosed with AS. She went three days of almost eating nothing, stating she has a chronic stomach ache. Upon taking her to the doctors, the doctor took her aside and tried to get her to describe what it felt like when she got hungry. She struggled for about five minutes to answer finally simply saying "It feels like I have a monster in my head roaring".

There were obviously many more symptoms, but this was the scene that made it imperative for her to get a diagnosis. She didn't know what her body was saying when it was hungry, she thought she had a stomach ache every time. She was 47 pounds. She has difficulty understanding the signals her body sends her about many things, she has difficulty understanding signals other humans are giving her, she has difficulty with abstract ideas, etc., her vocabulary is good but her use of words is often quirky and slightly off kilter.

The first few days I was so sad for her. I said to someone "I always just veiwed her as quirky, odd in a good way, interesting and funny, someone who marched to her own drummer. We always though ADHD." and my wonderful friend said "She still is , now you just know the drummer"

She was placed on a cool antihistimine that has a nice side effect of increasing appetite to stretch her stomach and get her used to eating and what hungry feels like or the signals that mean 'hungry'. She weighs fifty three pounds now and her hip bones dont stick out, her skin doesnt have that pale translucent with blue veins look any more. She grew out of the length of all of her jeans she has worn for almost two years now. She is a perfect size seven. We hope to take her off the antihistimine next month.

The beauty of a diagnosis is the ability to talk to my child in a language she understands, to help her LEARN what most of the common signals mean, even if its by memorization, so she can get through life with less heart ache , self hatred or frustration. Im very grateful at this time that her doctor who has known her since birth also has a son who is AS and was able to spot it. She had thought it a possibility before but felt nothing warrented looking into it yet as she was young and had few maladaptive behaviours as yet.

speedo
05-27-06, 11:52 AM
It is good to hear that Elizabeth has such a fantastic mom and a great doctor! Getting a ediagnosis is going to make such a positive difference for her.

ME :D

Lafnalot
05-27-06, 12:26 PM
Thanks for the kind comments. Im also grateful for the forums. I havent been active in a long time, but know it's here and a plethora of information is available along with support. I work two jobs and appreciate coming in at some odd hour to look for some information and, at the very least , finding an arrow pointing to what might be helpful.

ms_sunshine
05-27-06, 01:11 PM
Big hugs Lafn

to you and to Elizabeth :)

Lafnalot
05-27-06, 11:49 PM
>:D< ms sunshine

Lafnalot
07-23-07, 02:30 AM
An update on Lizzy...she is 60 pounds, only boney where shes supposed to be boney. While she is still thin for her height , supposedly, I no longer worry about whether or not she is getting in enough calories.

A great story about the first week when her stomach was stretching:

Lizz (without taking her eyes off her video game or pausing) 'Mamma, something is wrong with my back and stomache.'

Her older sister and I both stopped what we were doing and looked worriedly at each other.

I said"When did this start happening?"

Lizz (still wiggling her thumbs and doing that kick she does and playing the game) "Its not alla time, just suome times"

I said "Did you poop today?" (isnt that what Moms are supposed to ask about body aches)

Her sister snickered and Lizz rolled her eyes hissing "Yesssssssssss Motherrrrrrr"

"Ok" I said "Pause the game and show me what you mean"

Annoyed, she paused and stiffly tried to arch her back, then stiffly tried to bend forward saying "See I cant bend forward or backwards"

"Did you eat lunch?"

"Yes"

"what did you have for lunch?"

"Just tomato soup....."
"....and a grilled cheese....and Joses soup ....and his left over grilled cheese.........oh an orange....Jorges orange......some gummi worms...." she trailed off because her sister and I had gone from astonished to howling with laughter. This was a kid I had to bragain with to get half a peice of toast into her belly.

She was looking at us as if we had lost our minds so I explained:

"Lizz, what you are feeling (laugh) is (laugh) FULL, honey. Youre belly is full and youre not used to it. Just dont eat quite as much tomorrow at lunch"

"Oh" she said giving us another quizzical look then dismissing us by playing the game again.

Crazygirl79
07-31-07, 01:35 AM
That's great news!