to (about Mia's appt with Dr. H)

[Guest guest]

Thanks for your reply! Mia's appt is now on Jan 14 (friday) at

8:30am. We will miss each other by 1 week! Thanks for the input

about talking to my endo about Dr. H!! Let me know how your appt

goes in Jan.

nne (Mia's mom)

-- In RSS-Support , " Salem " <magicrss@m...>

wrote:

>

> Hi Mia's mom!

>

> We will also be flying from warm LA to NY to see Dr. H for a

checkup,

> but sadly, on Jan 7th. I think you should tell the local endo. We

> were in the same boat originally, 4 1/2 years ago. We simply

> explained that there was this pediatric endocrinogist in New York

who

> currently has more than 130 RSS patients. You understand that the

> vast majority of peds endos may see only a handful of patients with

> RSS in their lifetime, and you appreciate his dedication. You hope

> that visiting this New York doctor may give you some insight into

RSS

> that you are searching for, and would he be willing to correspond

> with Dr. Harbison is you requested it?

>

> IF he sounds like he wouldn't be willing to correspond, RUN. The

> best doctors are willing to talk and share with other doctors.

Good

> doctors recognize that many peds endos end up having a glut of

> patients in one type of disorder or another, and we can't expect

all

> to be knowledgable about every rare disorder. The egomaniacs who

> think they CAN know about everything are usually the ones who know

so

> little about everything.... Oh, I sound so harsh!!!

>

> Dr. Harbison is very willing to email and talk with other doctors.

>

> I am very happy that you are able to take Mia to see Dr. H. I

> caution you that what so many of us end up experiencing is that

there

> is such a rush of exhaled air when you see her -- FINALLY a doctor

> who knows my daughter and is teaching me things instead of visa

> versa ... that it makes it very difficult to go back to the local

> endo. But most people can't afford to fly regularly to NY.

>

> MAGIC does now have DVDs and VHS tapes of Dr. Harbison's

> presentations at the convention last summer. One is her treatment

> protocol; another is her and Dr. Spigland talking about the common

> gut dysmotility problems of RSS/SGA kids. One is Stanhope and the

> RSS/SGA Diagnosis (good overview) and one is of Harbison talking

> about Insulin Resistance risks for our kids. You can call MAGIC at

> 800-3MAGIC3. I would recommend at the minimum getting the tape of

> Dr. H's treatment protocol and watching it THREE times (HA!) before

> you go to new York.... At $10 for the DVD, well worth your time.

>

> Salem

>

>

> >

> > Happy Thanksgiving everyone! I am Mia's mom from Florida. I

> haven't

> > posted anything in a while. I spoke to Yadria about 2 months ago

> > about Mia seeing Dr. H (she is not diagnosed with RSS yet but is

> > SGA). She told me to put together all the info and test results

we

> > had on Mia so far, along with pictures of Mia (front and side

> > views). This took me about a month to get all the copies of

tests,

> > etc.

> >

> > Exactly one month after I mailed the package Yadria called me and

> > gave me an appointment for January 3rd. She said that Dr. H

> > definetly wants to see Mia. She said she has the look of an RSS

> baby

> > (except she had more fat on her than alot of the RSS babies). I

> was

> > just glad to get in with her.

> >

> > Mia just turned 2 and is 30 inches and 20 pounds. She has

feeding

> > therapy, OT and they just resumed PT. My physical therapist

> released

> > her from PT as soon as she started walking (21months). The early

> > intervention case worker was surprised she released Mia when we

had

> 6

> > more months of approval for PT. She re-evaluated her a few days

> ago

> > and said for gross motor Mia tested around 14-15 months old. So

> she

> > will get PT twice a week once again.

> >

> > We saw our endo here in Tampa on Friday and I didn't mention to

him

> > that I am going to see Dr. H. Should I have? I have only seen

> this

> > dr. twice. He did a bone scan of Mia's hand to find her bone

age.

> > He wants to see her every 6 months for growth check (he may want

> her

> > to start GH). He didn't seem too knowledgeable about RSS. (He

did

> > the UPD 7 test because I asked him about Rss. It came back

negative

> > so he said that rules out RSS. I told him that it is only

positive

> > in 10% of RSS kids but he was not interested)

> > Sorry I am rambling, but this past week we had an overload of

info

> on

> > Mia.

> >

> > Thanks for reading this.

> > nne

> > Allie 9, Jack 7, Casey 3, and Mia 2 SGA