re: Silver Syndrome - Tammy Sowell

[Guest guest]

I'm not sure entirely what they used to come to this conclusion. She had tons

of blood tests but all those came back ok. I honestly think it was just a last

ditch effert to diagnose her with " something " . It was obvious something was the

matter with her. She was so tiny, losing weight, weighed like 13 lbs at a year,

didn't walk until after 19mths, didn't roll over until a year old, and still

gets sick so easy. I still haven't figured out why no one recognized the

sensory issues or apraxia.

Things seem to be coming together for her more now. She still will get sick at

the slightest thing (temp change outside, spending the night in a different

enviroment, etc) We have her in gynmastics at the advice of her physical

therapist and yesterday was her first attempt to walk on the balance beam

alone...and she finally did it! She was just beaming and started hollering

" momma, look momma, look " She is finally starting to talk (started the first

of this year...along with a consistent dose of ProEFA every day) She is also

wanting to do things for herself, things she sees the other kids in her regular

preschool class do, but can't always do them even though she is a trooper and

will give it her best shot.

One odd thing I have just started to realize...our pediatrican etc have always

been concerned about LeAnne's weight, even to go as far as diagnosing her

" failure to thrive " at one point. And when I read your daughter's weight I have

a son that will be 6 in September and he only weighs 38 pounds, yet never has

our pediatrician said anything about his weight and he actually looks pretty

much like the other kids in his class at school. You can't tell until you try

to pick one of them up and they feel more " solid " . Or maybe it is just that

with LeAnne being 4 in Sept and still only weighing 22 pounds they forget about

my son. Dunno, like I said, didn't think about it as much until I saw your

daughter's weight. By the way, my husband and I are both 6 foot tall, so we

should be having pretty big kids I would have thought.

Hannah, mom to LeAnne and

Message: 17

Date: Tue, 7 May 2002 16:26:41 -0700

From: " Tammy Sowell " <Tammy_S68@...>

Subject: Re: Silver Syndrome

Hannah,

How do they diagnose this condition? Your daughter sounds just like my daughter

MiKayla only she also has a sleep disorder. She turned 5 last month and weighs

just 38/39 lbs soaking wet, but she is very tall for her age. Unfortunately

that doesn't help when she's developmentally delayed. She's been blood tested

up at our CDRC for a zoodle of things but she didn't have any of the stuff they

were looking for. Is this tested by blood?

Oddly with her, this past month she's been seeking out the stuff that she hasn't

ever been able to do before and she's insisting on doing it " by myself " . So

she's now crossing balance beams at the playground, climbing up rope ladders and

other very complex gross motor activities that she's never been able to do.

Last Friday while alternating feet going down a large staircase she looked up

and said to me, " Look Mommy, I can do it. I'm not sick anymore. " I about

died...not sure where she came up with being sick but truly most of her life

she's been a tired, frail child. I began the EFA regimen with her roughly a

month ago. Until this moment, I didn't connect it to this gross motor skill

gain but hmmm, it sure does line up. She's also talking a lot and I'm beginning

to understand much more of what she is saying.

Thanks,

Tammy