Re: discouraged beyond belief

[Guest guest]

That is just wrong. No doctor should be like that. My

daughter was IUGR and they always said she was small,

but I was never treated that way. They never could

figure out why she was not growing in the NICU either.

So I guess that was one thing in my favor, since she

was a preemie.

Hailey weighed 1lb 12 and 1/2 oz at birth. Everyone

said she should have weighed more for 28 weeks

gestation.

Hailey's peds are really good and really understanding

even though they did not know what was going on. I

wish you luck and hope you can find someone that

understands RSS and the reason why your child is

underweight.

--- psabsi6 wrote:

> I HAVE A BEAUTIFUL BABY GIRL ,DIAGNOSED AT BIRTH

> WITH IUGR.

> AT 2 YRS OLD AFTER MANY TRIPS TO DR. AND HOSPITALS

> WE FOUND OUT

> THROUGH A SPECIALIST THAT OUR DAUGHTER HAD LOW ZINC

> LEVELS THAT WOULD

> HAVE CAUSED HER FAILURE TO THRIVE ISSUES. OUR DOCTOR

> TOLD ME I HAD 30

> DAYS TO PUT WEIGHT ON HER OR SHE WAS RECOMMENDING

> REMOVAL OF MY CHILD.

> SINCE THEN MY CHILD HAS BEEN IN THE HOSPITAL TWO

> MORE TIMES AND 2

> CONSULT DOCTORS ( A GENETISIST AND A CHILD

> DEVELOPEMENT DR.) HAVE BOTH

> SAID MY DAUGHTER HAS RSS. SKYLAR GOES IN FOR A BONE

> AGE , LEG

> LENGTH ,AND HIP DISPLACEMENT STUDY THIS TUES. AND

> EVEN THOUGH HER DR.

> HAS ORDERED THESE TESTS ,SHE STILL WANTS TO SAY

> REGARDLESS, SHE

> BELIEVES MY CHILDS ENVIRONMENT IS THE CAUSE FOR NO

> GROWTH IN THE LAST

> 6 MO.DOES ANYBODY KNOW OF A GOOD PEDIATRITION IN THE

> ALBANY ,NY AREA

> THAT DEALS WITH RSS?

>

>

>

>

__________________________________

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[Guest guest]

Hi,

Sorry to hear that you have such a callous and uninformed

doctor. That sort of behavior is completely unprofessional and

uncalled for.

I don't live in that area so I can't recommend anyone. However, if

your geneticist has said it is RSS perhaps he can recommend a

pediatrician more familiar with RSS.

Also, since you are in Albany, you are relatively close to one of

the authorities on RSS. her name is Dr. Harbison and she is in

NYC. Hopefully others on this list will soon tell you where and

how to get in touch with her.

In the meantime, I'd cancel all appoitments with pediatricain

ASAP.

I hope this helps.

Ken M

>

> I HAVE A BEAUTIFUL BABY GIRL ,DIAGNOSED AT BIRTH

WITH IUGR.

> AT 2 YRS OLD AFTER MANY TRIPS TO DR. AND HOSPITALS

WE FOUND OUT

> THROUGH A SPECIALIST THAT OUR DAUGHTER HAD LOW

ZINC LEVELS THAT WOULD

> HAVE CAUSED HER FAILURE TO THRIVE ISSUES. OUR

DOCTOR TOLD ME I HAD 30

> DAYS TO PUT WEIGHT ON HER OR SHE WAS

RECOMMENDING REMOVAL OF MY CHILD.

> SINCE THEN MY CHILD HAS BEEN IN THE HOSPITAL TWO

MORE TIMES AND 2

> CONSULT DOCTORS ( A GENETISIST AND A CHILD

DEVELOPEMENT DR.) HAVE BOTH

> SAID MY DAUGHTER HAS RSS. SKYLAR GOES IN FOR A

BONE AGE , LEG

> LENGTH ,AND HIP DISPLACEMENT STUDY THIS TUES. AND

EVEN THOUGH HER DR.

> HAS ORDERED THESE TESTS ,SHE STILL WANTS TO SAY

REGARDLESS, SHE

> BELIEVES MY CHILDS ENVIRONMENT IS THE CAUSE FOR

NO GROWTH IN THE LAST

> 6 MO.DOES ANYBODY KNOW OF A GOOD PEDIATRITION IN

THE ALBANY ,NY AREA

> THAT DEALS WITH RSS?

>

[Guest guest]

I don't know your name. I live in Westchester county. I head south

to NYC to see Dr H. She really is the expert to see on this side of

the country. I would strongly suggest you make the trip down. You

are not the first parent of an RSS child to have this problem. I

know of other parents (maybe some of them will respond to you) who

have been accused of not caring for their child.

Dr H works out of Mt. Sinai hospital. I don't know how long you

would have to wait to get an appointment.

Judith, Steve, (RSS) and (non RSS) 5 year old twins

>

> I HAVE A BEAUTIFUL BABY GIRL ,DIAGNOSED AT BIRTH WITH IUGR.

> AT 2 YRS OLD AFTER MANY TRIPS TO DR. AND HOSPITALS WE FOUND OUT

> THROUGH A SPECIALIST THAT OUR DAUGHTER HAD LOW ZINC LEVELS THAT

WOULD

> HAVE CAUSED HER FAILURE TO THRIVE ISSUES. OUR DOCTOR TOLD ME I HAD

30

> DAYS TO PUT WEIGHT ON HER OR SHE WAS RECOMMENDING REMOVAL OF MY

CHILD.

> SINCE THEN MY CHILD HAS BEEN IN THE HOSPITAL TWO MORE TIMES AND 2

> CONSULT DOCTORS ( A GENETISIST AND A CHILD DEVELOPEMENT DR.) HAVE

BOTH

> SAID MY DAUGHTER HAS RSS. SKYLAR GOES IN FOR A BONE AGE , LEG

> LENGTH ,AND HIP DISPLACEMENT STUDY THIS TUES. AND EVEN THOUGH HER

DR.

> HAS ORDERED THESE TESTS ,SHE STILL WANTS TO SAY REGARDLESS, SHE

> BELIEVES MY CHILDS ENVIRONMENT IS THE CAUSE FOR NO GROWTH IN THE

LAST

> 6 MO.DOES ANYBODY KNOW OF A GOOD PEDIATRITION IN THE ALBANY ,NY

AREA

> THAT DEALS WITH RSS?

>

[Guest guest]

I've been down that road. When Max was 2 months old and diagnosed with

failure to thrive, he was put in the hospital by the new partner in our

pediatrician's office. He gave orders to have Max fed ONLY by the nurses. I

was not allowed to do more things for him than I can count. It was a

nightmare. Finally our regular pediatrician returned from vacation and changed

that order. But for years I was paranoid and traumatized.

If at all possible, try to get to NYC to see Dr. Harbison. She knows it all,

has seen it all before, and knows what to do. I know you may need to wait a

bit, but if you call and speak to Yadira, her secretary who is one of the nicest

people on this planet, you may be able to get in on an emergency basis. If

nothing else, Dr. H. may be able to write a letter to hold off the troops for a

bit until she can examine her.

Also, call the Magic Foundation. 1-800-3MAGIC3. They may have someone who can

step in for you and intervene. Dayna, a member of this listserve and the

temporary co-leader of the RSS/SGA Division, may be able to help. Actually,

Katy Frissora is the other half and she may be able to, as well.

Don't give up hope. We will help and advise you.

Jodi Z

[Guest guest]

Hi,

Welcome to the group - you have found the right place!

Get away from that pediatrician and immediately let the specialist

know what the pediatrician is threatening. If you know a lawyer I

would consult with one immediately. There are other families from

NY - your best bet would try and get to see Dr. Madeleine Harbison

in NYC. She treats about 150 kids with RSS.

I am so sorry you have to deal with this. Thankfully my

pediatrician is very supportive. AT least you have the specialists

on your side!

The best $30 you will ever spend will be if you join the MAGIC

Foundation! www.magicfounation.org

, mom to 5 and Emerence 31 mo 22lb 32 "

>

> I HAVE A BEAUTIFUL BABY GIRL ,DIAGNOSED AT BIRTH WITH IUGR.

> AT 2 YRS OLD AFTER MANY TRIPS TO DR. AND HOSPITALS WE FOUND OUT

> THROUGH A SPECIALIST THAT OUR DAUGHTER HAD LOW ZINC LEVELS THAT

WOULD

> HAVE CAUSED HER FAILURE TO THRIVE ISSUES. OUR DOCTOR TOLD ME I HAD

30

> DAYS TO PUT WEIGHT ON HER OR SHE WAS RECOMMENDING REMOVAL OF MY

CHILD.

> SINCE THEN MY CHILD HAS BEEN IN THE HOSPITAL TWO MORE TIMES AND 2

> CONSULT DOCTORS ( A GENETISIST AND A CHILD DEVELOPEMENT DR.) HAVE

BOTH

> SAID MY DAUGHTER HAS RSS. SKYLAR GOES IN FOR A BONE AGE , LEG

> LENGTH ,AND HIP DISPLACEMENT STUDY THIS TUES. AND EVEN THOUGH HER

DR.

> HAS ORDERED THESE TESTS ,SHE STILL WANTS TO SAY REGARDLESS, SHE

> BELIEVES MY CHILDS ENVIRONMENT IS THE CAUSE FOR NO GROWTH IN THE

LAST

> 6 MO.DOES ANYBODY KNOW OF A GOOD PEDIATRITION IN THE ALBANY ,NY

AREA

> THAT DEALS WITH RSS?

>

[Guest guest]

Welcome to the group. You have come to the right place. Yes, a new

doctor is in order. Don't let them get to you. You are doing

everything you can. Keep your head held up high and continue as you

are doing - finding answers. You'll see lot's of great advice here.

- H

>

> I HAVE A BEAUTIFUL BABY GIRL ,DIAGNOSED AT BIRTH WITH IUGR.

> AT 2 YRS OLD AFTER MANY TRIPS TO DR. AND HOSPITALS WE FOUND OUT

> THROUGH A SPECIALIST THAT OUR DAUGHTER HAD LOW ZINC LEVELS THAT

WOULD

> HAVE CAUSED HER FAILURE TO THRIVE ISSUES. OUR DOCTOR TOLD ME I HAD

30

> DAYS TO PUT WEIGHT ON HER OR SHE WAS RECOMMENDING REMOVAL OF MY

CHILD.

> SINCE THEN MY CHILD HAS BEEN IN THE HOSPITAL TWO MORE TIMES AND 2

> CONSULT DOCTORS ( A GENETISIST AND A CHILD DEVELOPEMENT DR.) HAVE

BOTH

> SAID MY DAUGHTER HAS RSS. SKYLAR GOES IN FOR A BONE AGE , LEG

> LENGTH ,AND HIP DISPLACEMENT STUDY THIS TUES. AND EVEN THOUGH HER

DR.

> HAS ORDERED THESE TESTS ,SHE STILL WANTS TO SAY REGARDLESS, SHE

> BELIEVES MY CHILDS ENVIRONMENT IS THE CAUSE FOR NO GROWTH IN THE

LAST

> 6 MO.DOES ANYBODY KNOW OF A GOOD PEDIATRITION IN THE ALBANY ,NY

AREA

> THAT DEALS WITH RSS?

>

[Guest guest]

Shellee,

Hang in there. It's all so hard but you'll make it. You are doing a great

job, I'm sure.

Kathy (Jack,6, non-RSS and Willie,4 1/2, RSS, can't break 25 lbs, Periactin,

GHT, Zantac, etc)

[Guest guest]

Hi Shellee!!

Glad to see that you've found your way back here. From what you've written, I

would say her bone age is good, and her asymmetry isn't too bad either! That is

all good news!!

About her urethra abnormalities.... I don't know much about RSS girls, but

hypospadias, a birth defect in which a boy's urethra, through which urine and

semen pass, opens on the underside of the penis rather than at the end, seems to

be fairly common. Could this be a female version of this problem??

Look forward to your appt with Dr H. She will be able to tell you whether this

is, or is not a common abnormality in RSS girls. She's the best when it comes to

our kids!!

Welcome back!!

Pat (g-ma to , RSS, 3 yrs 10 months old, 25#, 34.6 " , G-tube, GHT)

[Guest guest]

Shelee,

I'm so sorry that your little girl has to have the reconstructive

surgery, but it is because of YOUR dilligence that the doctors are

finding all of this out. And don't forget that. You are a GOOD mom.

You are doing the best you can for your daughter. Obviously, the

doctor feels the same because you said she made the contact for you to

see Dr. H. That is wonderful.

I know how awful it is to face surgery for your child. I know you

want her to be perfect. And she is. She just needs a little tweaking

here and there to make her even better. You are doing everything you

can. Keep up the good work and keep us posted.

Jodi Z

[Guest guest]

HI Shellee!

although I do not go to Dr. H to NY to see herI do see her in

Chicago every year...she may be very direct but I would feel

confident that she will make the best suggestions for your daughter.

Good luck, please hang out with us!

, mom to and Emerence 32 months, 22 lbs, 32 "

>

> I JUST NOW GOT MY COMPUTER SET UP AND IT TOOK FOREVER TO FIGURE

OUT

> THE MAIL SYSTEM.

> I WANT TO THANK EVERYONE WHO RESPONDED TO MY FIRST POST .

> WELL, WE WENT FOR THE BONE AGE STUDY ,LEG LENGTH ,AND THE TEST FOR

> POSSIBLE URETHRA ABNORMALITIES.

> SKYLAR IS 2YRS 2MO. OLD 18 LBS AND 31 IN. TALL.

> HER 1 FEMOR IS .2 CM LONGER THAN THE OTHER ONE AND HER BONE AGE IS

> THAT OF A 1YR 3 MO. CHILD.

> THE URETHRA STUDY WAS DEVASTATING!

> SHE ONLY HAS 1 OPENING TO THE OUTSIDE OF HER BODY AND ITS HER

VAGINA .

> HER URETHRA OPENING OPENS UP INTO THE VAGINA AND THAT IS WHERE SHE

> URINATES FROM.SHE HAS POOR MUSCLE TONE IN HER ORGANS AS HER

BLADDER

> AFTER VOIDING STILL CONTAINS RESIDUAL AND HER BLADDER CAPACITY IS

> ABNORMAL AS WELL.

> SO NOW ON TOP OF THE BAD MOMMY SENARIO I GET EVERY WHERE I GO ,WE

ARE

> LOOKING AT RECONSTRUCTIVE SURGERY .

> ON A POSITIVE NOTE , MY PEDIATRICIAN HAS DECIDED THAT REMOVAL OF

MY

> CHILD MAY HAVE BEEN A LITTLE HASTEY AND MADE THE APPOINTMENT WITH

DR.

> HARBISON HERSELF , WE GO TO SEE HER END OF JAN.

> THANK YOU AGAIN FOR YOUR RESPONSES ,AND FOR THOSE THAT ASKED ,MY

NAME

> IS SHELLEE.

>