Re: New to lists, mom with questions

January 10, 2008

Thanks for your response. ****Ariana has so far only has two regular

brain/head MRIs. She has had no other studies other than blood-work

related to her feeding issues, a lousily done swallow study, a recent

24-hour pH probe ( " borderline " number of episodes, with an absence of

" symptoms " correlated with those, concluded to be non-GERD), and a

hearing test (superior range hearing!)***.

I know for sure she has sensory issues; everything bothers her. We

have to cut tags out of clothing, her socks have to be just right in

her shoes, her shoes themselves don't feel right from day to day, hair

bands, etc... but she has never been referred for OT. I wasn't even

aware of such a thing as a " sensory diet " . I know a lot of her eating

issues have to do with what seems to be extreme pickiness, but at the

same time it varies from day to day as far as what she " likes " or

doesn't, so it seems to go beyond just being finicky (as in her just

being difficult to be bratty, for lack of a more tactful way to put

it). This is all very interesting!

Thanks,

Beth

>

> My son was 37 lbs at 7 1/2 and 65 lbs now at 12 years old. He can

> eat like a pig too and still not gain an ounce, and other times its

> like pulling teeth to get him to eat.

>

> Has she had a full spine MRI to rule out a syrinx causing the

> numbness? And has she had csf flow study MRI with her brain MRI to

> check the flow for obstruction? That is a much better indicator

> actually of whether her Chiari is " severe " or not, rather than

> looking at tonsillar herniation length.

>

> Fatigue was/is common with my son. And you might check if his ADD

> symptoms are really Sensory Processing Disorder symptoms and a

> Sensory Diet by an Occupational Therapist might help. As for the

> chest pain, my son had lots of pains when symptomatic, especially

> stabbing eye pain or ear pain, but I also noticed his asthma was

> really worse when he was really compressed and it almost completely

> cleared up after his decompression.

>

> Wishing you all the best for you and your daughter...

>

> Rochelle

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