Appt with Dr. H in Jan and questions

[Guest guest]

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

[Guest guest]

Max has an appointment with Dr. H. on Jan. 3, also. It is for

9:30. When is yours? I won't be there because I have to be back to

school (they won't let teachers take a day off before or right after

a vacation), but my husband will be.

Jodi Z

[Guest guest]

Hi nne,

I am from Florida too, and my son, , will be seeing Dr. H on December

29th. We

are actually flying home on January 3rd. It's too bad we will miss each other.

I would mention to your local endo that you will be seeing Dr. Harbison. He may

not know

of her, but once you enlighten him on her experience with RSS/SGA kids, he may

have a

few questions for you to ask her while you are there. Also, if you plan to keep

seeing the

endo in your area, it might be helpful for him to speak to Dr. H at some point

to consult

about Mia's treatment.

I wish you luck and be sure to pack warm clothes!

Kim C.

> 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

[Guest guest]

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

[Guest guest]

Kim: Where do you live in Fl? I live in tampa. Thanks for your

email about the endo. I will definetly tell Mia's endo about Dr. H.

Thanks again!

nne

-- In RSS-Support , " Kacey171 " <capuano_k@p...> wrote:

>

> Hi nne,

>

> I am from Florida too, and my son, , will be seeing Dr. H on

December 29th. We

> are actually flying home on January 3rd. It's too bad we will miss

each other.

>

> I would mention to your local endo that you will be seeing Dr.

Harbison. He may not know

> of her, but once you enlighten him on her experience with RSS/SGA

kids, he may have a

> few questions for you to ask her while you are there. Also, if you

plan to keep seeing the

> endo in your area, it might be helpful for him to speak to Dr. H at

some point to consult

> about Mia's treatment.

>

> I wish you luck and be sure to pack warm clothes!

>

> Kim C.

>

>

> > 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

[Guest guest]

nne,

I live in S. FL between Ft. Lauderdale & Miami.

Kim

> Kim: Where do you live in Fl? I live in tampa. Thanks for your

> email about the endo. I will definetly tell Mia's endo about Dr. H.

> Thanks again!

>

> nne

>

> -- In RSS-Support , " Kacey171 " <capuano_k@p...> wrote:

> >

> > Hi nne,

> >

> > I am from Florida too, and my son, , will be seeing Dr. H on

> December 29th. We

> > are actually flying home on January 3rd. It's too bad we will miss

> each other.

> >

> > I would mention to your local endo that you will be seeing Dr.

> Harbison. He may not know

> > of her, but once you enlighten him on her experience with RSS/SGA

> kids, he may have a

> > few questions for you to ask her while you are there. Also, if you

> plan to keep seeing the

> > endo in your area, it might be helpful for him to speak to Dr. H at

> some point to consult

> > about Mia's treatment.

> >

> > I wish you luck and be sure to pack warm clothes!

> >

> > Kim C.

> >

> >

> > > 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