Re: Updates, Questions and Comments

[Guest guest]

hey mary!!

congrates on getting your waiver i know you have been waiting on

that to come in!! just wanted to let you know christopher just had

his check up with dr h on jan 29 and he too has platued. he is now

finished with his caloric catch up growth. he is also on periactin

and had no weight or height gain in 3 months. dr h said it was now

time to start ght, so that is what we have done and upped his

periactin. he has now been eating much more. just a thought maybe

for you. maybe that is all connor needs to begin his ght. i will

let you know what type of difference it makes after we have our next

check up on may 2. good luck!!

jodie c.

(nicholas-6 1/2 nonrss , christopher-4 rss 27lbs 6oz 36 1/4 "

periactin 4.5cc, ght genotropin .6, ADHD and OCD possible, assmentry

(left side 1cm), johnathon-19m nonrss)

>

> Hey Y'all,

>

> In the great gaame of life, we've been tossed another lob ball.

I'm

> backing up, rethinking and investigating our plan for Connor's

> future.

>

> Here's the good news first. Within two weeks we have received the

E

> & D waiver and Medicaid for Connor. Yippee!!! Now when the docs

> want to order all those funky tests, we have secondary insurance

to

> back it up. I'm checking on if they cover gh shots and kindercal.

>

> Our endo visit was mixed. Connor's growth plateaued, but we were

> expecting that as his two year old growth spurt leveled off.

> However, so did his weight. Mind you Connor has had one cold and

the

> Croup, but to have no wt. gain in three months, especially after

> Christmas munching was a little sad to take. His stats right now

> are 27 inches and 21 pounds. His asymmetry is still mild but the

> back isn't improving, even with regular P.T.

>

> Oh, did I mention that Connor's been on Periactin and still didn't

> gain. Sigh.

>

> So, on Wednesday, we go see the Pediatric G.I. specialist (who I

> love) and discuss the g-tube. My speech therapist assures me that

> while Connor is an oral eater now, he will continue to be even on

> the tube. She is supportive of the possibility.

>

> Oops! Got to go, Graham is sick.

>

> Will write more later.

>

> P.S. Joe Beth: Perhaps applicable solutions using your extensive

> knowledge would be more digestable for us who have children with a

> wide range of phenotype in the RSS syndrome. Simply put, give us

> some receipes, not studies and let's see if our children's BSL's,

> IGF's and other endocrine issues can be addressed. Oh, don't know

> what those are? May be you should study RSS more before applying

a

> blanket doctrine for all. Just my few crumbs of thought.

>

>