Re: appt with dr. harbison

[Guest guest]

Hi everyone. We have planned to see Dr. Harbison on Dec 16 at 3pm. Does

anyone else out there have an appt with her on the same day? If so, write

back--thanks. jim

----------

To: RSS-Supportonelist

Subject: Hi I am new to onelist

Date: Saturday, November 20, 1999 1:17 AM

Hi! my name is and my daughter Alisha has RSS she is 8 years old. Wow

I have been reading all of your e-mails and I am amazed it seemed like my

daughter was the only one with RSS. nobody has never heard RSS.

I was only 16 when I had my daughter. She was only 4 weeks early and only

weighed 3lbs.from day one she never liked eating. It was horrible, and the

doctors thought I just wasn't doing my job as a mother right I guess. They

just kept admitting her to the hospital for failure to thrive, then she had

reflex at 2 months old. They kept her in the hospital for months at a time.

They even went as far as taking her away from me. I didn't take long to

realize that they did wrong when she lost even more weight with out me. She

was gone only for a couple weeks,but them weeks seemed like years That was

the worst time of my life. I had no family that was close or that wanted to

help me,and her dad was out of the picture. I got a lawyer on my own and

got her back.

Then I meet my husband when Alisha was only 1 and 1/2 She was so little and

still not eating very well,and was always sick with an ear infection, or

RSV, or something she would loose weight and get dehydrated all the time.

At the time we lived in S.D. and the doctors just kept telling me she would

grow and there is nothing wrong. they would not refer me to another doctor,

so finally my husband now helped me get Alisha to the Mayo Clinic in

Rochester MN. They knew right away she had RSS so we checked to see if she

was producing enough growth hormone on her own and they said she was. so

after awhile she was still was not growing like she should .so we started

growth hormone shots at home Alisha was about 3and 1/2

when we started it seemed to help a little they kept increasing the shot.

Now we live in M.O. because my doctor at the Mayo clinic said he knew a

doctor here. I don't know what to think he stopped her shot for 6 months

and she never grew started her again and it helped a little now she was off

again for 6 month and never grew on her own now we have to start all over

again. I'm not sure what to think about my doctor.

Sorry this is so long I hope I never bored anyone.

I would greatly appreciate any impute or suggestions.

Thank you,

-

[Guest guest]

Jim, we just saw Dr. Harbison, so we won't be there on the 16th; however,

she wants us to take Max to a foot doctor at the Hospital for Special

Surgery, which is right across the street. I can try to get an appointment

for that day, too. I guarantee that we would be done there before you are

done with her.

Jodi

Hi I am new to onelist

>Date: Saturday, November 20, 1999 1:17 AM

>

>Hi! my name is and my daughter Alisha has RSS she is 8 years old. Wow

>I have been reading all of your e-mails and I am amazed it seemed like my

>daughter was the only one with RSS. nobody has never heard RSS.

>

>I was only 16 when I had my daughter. She was only 4 weeks early and only

>weighed 3lbs.from day one she never liked eating. It was horrible, and the

>doctors thought I just wasn't doing my job as a mother right I guess. They

>just kept admitting her to the hospital for failure to thrive, then she had

>reflex at 2 months old. They kept her in the hospital for months at a time.

>They even went as far as taking her away from me. I didn't take long to

>realize that they did wrong when she lost even more weight with out me. She

>was gone only for a couple weeks,but them weeks seemed like years That was

>the worst time of my life. I had no family that was close or that wanted to

>help me,and her dad was out of the picture. I got a lawyer on my own and

>got her back.

>

>Then I meet my husband when Alisha was only 1 and 1/2 She was so little and

>still not eating very well,and was always sick with an ear infection, or

>RSV, or something she would loose weight and get dehydrated all the time.

>

>At the time we lived in S.D. and the doctors just kept telling me she would

>grow and there is nothing wrong. they would not refer me to another doctor,

>so finally my husband now helped me get Alisha to the Mayo Clinic in

>Rochester MN. They knew right away she had RSS so we checked to see if she

>was producing enough growth hormone on her own and they said she was. so

>after awhile she was still was not growing like she should .so we started

>growth hormone shots at home Alisha was about 3and 1/2

>when we started it seemed to help a little they kept increasing the shot.

>

>Now we live in M.O. because my doctor at the Mayo clinic said he knew a

>doctor here. I don't know what to think he stopped her shot for 6 months

>and she never grew started her again and it helped a little now she was off

>again for 6 month and never grew on her own now we have to start all over

>again. I'm not sure what to think about my doctor.

>Sorry this is so long I hope I never bored anyone.

>I would greatly appreciate any impute or suggestions.

>Thank you,

>-

>

>>

[Guest guest]

Hello, We were ready to go to Boston to meet with our

GI specialist when Dr. Harbison got wind of it and was

quite upset that we were going. She called us and

told us that she could fix Allies gi problems and that

there was no need to go to anyone else. We were very

upset and felt it should be our decision to go

wherever. Allies pain is real and needs to be looked

at. After our phone conversation, she called him and

cancelled everything. We were just stunned that

someone would ruin everything we worked so hard for.

Anyway , we now instead will be going to Dr. Harbison

for an appt on Tuesday at 3pm to talk things over.

Does anyone else on this list serve have an appt??????

Write back if you do- wed love to meet someone....

thanks to everyone!!! jim, sherry, and little Allie

[Guest guest]

Jim, if it is any help, Dr. Harbison frequently consults with Dr. Levy,

Max's gastroenterologist. He is at Columbia-Presbyterian Hospital in NYC.

The GI at NYH is Dr. Marta Illeuca (the first letter is an i), but we do not

like her at all. When the going gets rough, she leaves town, if you know

what I mean. Dr. H. really is pretty good at working on GI problems, so I

would not worry too much or be too upset. She can be crazy, I know, but it

is really out of concern. Dr. Levy knows the guy in Boston, so I hope that

is some consolation. Just try to let go of some of the disappointment and

let her do her thing. She WILL find some answers for you. Hang in there.

Now, if Dr.H. would only contact me about some sort of pain management for

Max. It is Friday and we don't stand a chance of hearing from her before

Monday afternoon now. I have her home phone number, but I hate to use it

even if she said it is okay. I have emailed her, but she has not responded.

I hope she is not at her place in NJ riding horses this weekend. I really

need her to help us!!

How long will you be in NY? I have to take Max to see a doctor on Thursday

afternoon. The appointment is at 4. There is a chance, however, that we

will be in the city sooner if Dr. H. has arranged for Max to see the pain

management people or the neurologist she talked about. It would be nice if

we could meet. I will keep you posted. You have my phone number. When are

you leaving?

Jodi

Re: appt with dr. Harbison

>

>

> Hello, We were ready to go to Boston to meet with our

> GI specialist when Dr. Harbison got wind of it and was

> quite upset that we were going. She called us and

> told us that she could fix Allies gi problems and that

> there was no need to go to anyone else. We were very

> upset and felt it should be our decision to go

> wherever. Allies pain is real and needs to be looked

> at. After our phone conversation, she called him and

> cancelled everything. We were just stunned that

> someone would ruin everything we worked so hard for.

> Anyway , we now instead will be going to Dr. Harbison

> for an appt on Tuesday at 3pm to talk things over.

> Does anyone else on this list serve have an appt??????

> Write back if you do- wed love to meet someone....

> thanks to everyone!!! jim, sherry, and little Allie

>

>

>

> ------------------------------------------------------------------------

> MAXIMIZE YOUR CARD, MINIMIZE YOUR RATE!

> Get a NextCard Visa, in 30 seconds! Get rates as low as

> 0.0% Intro or 9.9% Fixed APR and no hidden fees.

> Apply NOW!

> http://click./1/2122/0/_/229381/_/953951387/

> ------------------------------------------------------------------------

>

>

>

[Guest guest]

Jim,

I understand completely your feeling with Dr. H cancelling everything on

you. She kind of did that same type of thing to me last Tuesday. We made a

special trip in to NY just to see her and get her expertise on RSS and how

to treat . Within 20 minutes, she was on the phone with one of the

top surgeons in NY (at Lennox Hill) talking Cochlear Implants. It was like,

wait a minute, this is one thing we have a clue on. I know more than her

about CI's? I was mad that our valuable time with her was more spent on

's hearing loss, than RSS. Well, I can honestly say that when I got

back home I got in touch with this surgeon's office about CI's, and boy, did

she make the right move in getting me in touch with these people. They are

wonderful! I don't know at this time where his CI will take place, but I

can definately tell you that this hospital will play a role in his CI

surgery, that's for sure. They already told me if I'm stuck in CT due to

our insurance (there's that bad word, again), that they will work with the

surgeon to do what is best for . Thank you Dr. H!

Cheryl

Mom to , , and (RSS, gtube) - 25 mos.

P.S. She also told us it's Her Way or The Highway -- she ain't lying!!!