Count us in
DD is 10 (and a 1/2
) and she has had SID since she was born...and/or
it was created in the NICU when she was in there for a month after birth.
She showed no sign of it while in the hospital for that month because I think her body was just shut down, but the second we got her home it all started.
The OT who came to the house wouldn''t believe us because she was so young. Of course I didn't know what to call it at the time. DD cried like hell everytime the phone rang, someone sneezed, coughed, laughed, or anything else unexpected.(don't get me started about the noises outside of the house - buses going by, car horns, etc.) She also woke up to any little noise, and I mean little. She slept with us, but during the day could not be put down while sleeping-- you had to hold her the whole time she slept or she would wake up EVERY time.
Anyway, this went on and she was diagnosed at some age...maybe 2 1/2. The psychologist was an expert on autism and she felt like her issues were about 50% neurological and 50% caused by all her time in the hospital (dd had had about 6 surgeries by this time and 7 hospitalizations, not counting the numerous CAT scans and other tests all the time)
Well, it proved to be true because every hospital visit worsened her symptoms for a while...and then when she'd start to improve we'd be back in the hospital again and starting all over.
Anyway, DD was born not to be a very good eater. She was a good nurser from the beginning, but didn't nurse quite as much as most babies. She didn't like solids much and didn't really start eating them regularly until about 18 months.
Weight was always an issue and at age 5 we finally gave into the idea of a g-tube. By this time she had eliminated so many foods that she was down to white bread and butter, tofutti cuties (tofu ice cream sandwiches), and cheetos and soy milk.
She threw up regularly, partly due to the Chiari Malformation Type II that put pressure at the back of her throat, but mostly due to textures and such.
After the g-tube the food intake slowly picked up and she is a good eater today and we only use the g-tube for medication.
She still will only eat certain things, but continues to try new things. She spits her food out a lot (in a napkin
) but still will try, which makes me happy.
She talks about being grown up someday and eating all kinds of things. I think she hopes that when she grows up she won't have this problem. She talks about liking certain foods to be "cool" with her friends...like she pretends to love pop/soda but she will only pretend to take a sip and then talks about how good it is
It's been a journey that is for sure. We went to the movies yesterday and I fed her m&m's while she sat with her fingers in her ears
My favorite books are:
The Out of Sync Child, Helping the Child Who Doesn't Fit In, Quirky Kids, The Explosive Child, Nonverbal Learning Disablities at Home, and probably some more. I have the book Can't Eat Won't Eat but I've never read it
I would have read it for sure if I had had it years ago. I guess I bought it now because I could still use some tips even though we are not in crisis anymore.
I could probably go on and on, but I'll quit now to spare you
DD's primary diagnosis is Spina Bifida with Hydrocephalus...There's a whole other list, but that's the primary diagnosis. She has an anxiety disorder with specific phobias, but it's hard to say which came first the anxiety or the SID.