Re: Re: Therapies - message to all

May 15, 2011

is & #39; diagnosis came at two, not because of the pediatrician but because

of a persistent mommy who eventually took her to the ER at a childrens hospital

in our area to get someone to acknowledge there was a problem. The issue has

been the system! We live in CA, USA and is has Medi-Cal, the State run

insurance. The only way to proceed is to get a referal from her primary doc (the

blind ped). Only after the report from the ER went back to her primary

Peditrician did we get the referral to the neuro (what we had been pushing for

all along) We have now seen the neurologist and been refered to the Charlie

Clinic a pediatric clinic specializing in care for children with acute

medical issues. Both the neurologist and the specialized clinic have refered her

for speech therapy, physical and OT. We have been calling and waiting for

appointments since since January of this year. And have just been told we are

" on the list " . The clinic has

sent all her results to Dr. Dobyns in Seattle and we wait also be seen by him.

In the mean time we are doing our own home grown OT and PT with her and are

actually seeing progress. We have also using a combination of augmentative

communication systems. She has a sign language vocabulary of about 700 words and

uses her Itouch with a carrying case my daughter created and the Proloqu2go

language program that we bought out of pocket. Her neurologist is amazed by her.

Looking at her MRI he said she should have no Receptive language at all, as the

damage area lies smack dab in the middle of her language centers. Her latest

assessment by the school district placed her receptive skills at 7 years. The

neuro & #39;s best guess is that her brain is re-wiring around the damaged area.

We did start sign language at a very young age, 4-6 months old, possibly that

helped? Well, thanks for letting this G-Ma ramble on. But I do believe in being

proactive and would

appreciate list of possible therapies and strategies for expediting treatment.

I appreciate all you dedicated parents who push for your children. GOD has been

preparing me for my role for the past 20 years teaching children with

severe/profound disabilities. We can make a difference!

Tammy G-Ma

May 15, 2011

No here vision is intact, but it was a concern of the neurologist. She is also

missing a structure in her brain, the midline corpus colosseum which lies very

close to the optic center but so far no problems. We started using sign language

because its a tool I have always used with my disabled students and my own

children when they were acquiring language. The pairing of the physical sign

activates language centers in the brain even when oral language is not present

(builds pathways). Language can start to develop prior to the child being able

to articulate words. Same thing is true with reading, so important to read to

children even before speech develops. I guess we were doing early intervention

before we knew it was necessary. Our neuro thinks it might be why we are not

seeing global delays yet.

Tammy

> Hi Tammy

>

> If you don't mind me asking is your daughter sight impaired? and learnt sign

language?

>

> Katy, mummy to Jenna :-)

>

> >

> > is & #39; diagnosis came at two, not because of the pediatrician but

because of a persistent mommy who eventually took her to the ER at a childrens

hospital in our area to get someone to acknowledge there was a problem. The

issue has been the system! We live in CA, USA and is has Medi-Cal, the State

run insurance. The only way to proceed is to get a referal from her primary doc

(the blind ped). Only after the report from the ER went back to her primary