- ditto from Carmen

[Guest guest]

- I emphathize with you. Our first peds endo did the same thing as your

doctor. Wait and see. As long as is growing about 2 inches a year, she

is fine, and don't worry about her weight because RSS kids don't gain weight.

Excuse my language, but BULLSHIT!!!!!!

In the one year that has been seeing Dr. Harbison in New York (we live

in Los Angeles), she has gained SEVEN pounds (and she has always had a good

appetite) and gained in height too (hasn't been measured recently). This

despite two hospitalizations and bouts with the stomach flu. She has also

gained incredible muscle mass, and matured amazingly.

The things that Dr. H has done for us that other doctors never recommended or

failed to do.... measure accurately taking into consideration her assymetry;

use cornstarch at night which has virtually stopped her morning tantrums;

hospitalizations/IV with Dextrose 10% whenever she vomits for more than 4 hours;

Periactin combined with Zantac (reflux resurfaced....), and now growth hormone

when was 4yrs 9 months old; as well as the completion of 's IEP

for kindergarten next year and ongoing speech therapy.

In addition, Dr. Harbison has nailed me on several of my parenting styles which

exacerbated 's " younger " appearance. How I talked to her, my

expectations of , even the fact that I tended to carry her everywhere

(well, it was easier!!!). Other moms of 5 year olds don't carry their kids

around!!!!

All of this has had a profound effect on both and our family. I am SO

much more confident of my ability to know what is best for my child. And I

ALWAYS know that whenever I am scared or unsure, all I have to do is email Dr.

Harbison or call her, and she will be there for us. Even 3,500 miles away.

adores her and yet remains slightly intimadated by her (perfect as Dr. H

can get her to do things that we can't!!!)

I am not saying that there are not other peds endos out there that coiuldn't do

these same things. However, we just never found one. You need a doctor that

can do these same things for your child.

WAIT AND SEE is NOT an appropriate answer!!!! RSS children will NOT suddenly

have a growth spurt and suddenly be normal height. They will NOT suddenly

become chubby (well, maybe after puberty....) A doctor's ignorance is not

acceptable for anyone's child. Diagnosing and treating an RSS child based on

information gotten from a medical diagnostic book is NOT acceptable.

Dr. Harbison is very willing to work with most any peds endo across the United

States. The question is whether or not another peds endo is willing to give up

some control.....

I wish you luck. I apologize for the hmmm, " strength " of my email. I, too,

like Carmen am so pissed off that we wasted so many years piddling around with

this peds endo that everyone else said was " so great " who did diddly-squat.

Salem (, 5.2 yrs, 34 pounds!!!!, 40 " ??, GHT)

RSS-Support wrote:

>

Hello Everyone,

>

I want to Thank those of you who responded to my

>

clothing questions. But now on to some new ones. I am

>

very confused with reading all of the e-mails. My son

>

is on no medication and seems to be different from

>

what I am reading. He is very small, has the

>

triangular face, poor eating habits, had IGR at birth,

>

and he is very active. The genetic specialist that we

>

go to in Pittsburgh, Pa is Dr. Mc Pherson at

>

Magee Womens Hospital. Last year when we were there

>

she basically said that Collin will be small an we

>

don't have much to worry about other than that. She

>

did tell us to come back for yearly check ups, which

>

we have an appointment mid April. She also told us to

>

watch for signs of early puberty and then at that

>

point we could discuss growth hormones??? Some days I

>

just start to cry and I can't stop. My son is the one

>

who puts his arms around me and tells me " mom it will

>

be ok " I guess if some of my questions that I fire at

>

every doctor we have been to would have some answers

>

than maybe my tears would stop and I would know what

>

direction to go in? I do have Collin on Shaklee MEAL

>

SHAKES AND MULITVITAMINS. I researched the company and

>

found that what they say is in their products is what

>

really is in there. I f anyone could help me with some

>

ideas on getting him to eat better I would appreciate

>

it. Thank you very much in advance.

>

>

Spader

>

>

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