RE: Thank you for the warm welcome!

February 13, 2006

Hi Lorraine,

As soon as you can, contact S. at magicrss @mindspring.com

(remove the space between magicrss and the @ symbol).

She lives in the L.A. area and can put you intouch with doctors who

know about RSS.

I hope this helps.

Ken M

>

> Thank you for the warm welcome and the emails, it was heartwarming.

> Now let me tell you about my angel, his name is Angelo born 4.1

> lbs., 39.5 cm in length. He stayed in NICU for a week and another

> week in nursery. From then on it was a battery of test for him to

> figure out why he's small considering that he's full-term.

> Fortunately he has a great pediatrician and a wonderful

> endocrinologist who monitored him constantly unitl we left to go

> here in U.S. last 2002. Before we left Philippines his

> endocrinologist gave us 3 probable diagnosis, no. 1 on the list was

> RSS which she thinks is most likely because of the clinical

pictures

> that he manifest. As of this moment we are currently seeing an

> endocrinologist in Children's Hospital of L.A., my frustration

> though is we can't seem to get a GI doctor and geneticist on board.

> It is so frustrating because I already got the authorization for

> both on the same hospital but they still haven't scheduled him for

a

> consult, and they are telling us that it usually takes months to

get

> an appointment. I don't know if this is how the system works here,

> maybe i just got used to having his medical needs get addressed

> right away when we were in the Philippines, talking about getting

> spoiled hihihi. Anyway, his last check-up did not go very well,

endo

> said his growth is poor and the dilemma is he can't say whether its

> his body that is not producing growth hormone or is it because he

is

> not getting enough nutrition that's why he's not producing growth

> hormones. It's really frustrating because we have been in such a

> standstill trying to get answers, the good thing though is that he

> is gonna go ahead and do a test where Angelo will have to fast for

a

> day and then stay in the hospital for 4 hours to do the test. At

> times I feel so inadequate because i'm suppose to know all this

test

> and all the things that pertains to my son's condition. But

> everytime we go to the doctor my mind goes blank and I can't ask

the

> questions that I'm suppose to ask. I read all your emails and I am

> so amazed at all this massive info that you guys share with each

> other. You are all a superb mom! So right know we are still at a

> standstill, Angelo's current weight is 24 lbs and he's 68 cm. Very

> much active and through God's grace very much healthy. Well, that's

> about it for now, i'll be looking forward to hearing from all of

you.

>

> God bless,

> Rraine

>

February 13, 2006

Rraine

Please don't let yourself feel guilty for not having all the answers. I

complain alot about how we look to our Doctors for all the knowledge and most of

the time we learn more about our kids through talking to each other on this site

than we do from them! I think that RSS has such a broad range of signs and

symptoms that we will never fully understand why it affects some more than

others. You are doing the best job for your son as possible and the fact that

you are here is one of the best things you can do for your son! Keep up the

good work! You're doing a GREAT JOB!

Jeanie

(mom to 19 and Brockton 18 mo. RSS)

lorraine wrote:

Thank you for the warm welcome and the emails, it was heartwarming.

Now let me tell you about my angel, his name is Angelo born 4.1

lbs., 39.5 cm in length. He stayed in NICU for a week and another

week in nursery. From then on it was a battery of test for him to

figure out why he's small considering that he's full-term.

Fortunately he has a great pediatrician and a wonderful

endocrinologist who monitored him constantly unitl we left to go

here in U.S. last 2002. Before we left Philippines his

endocrinologist gave us 3 probable diagnosis, no. 1 on the list was

RSS which she thinks is most likely because of the clinical pictures

that he manifest. As of this moment we are currently seeing an

endocrinologist in Children's Hospital of L.A., my frustration

though is we can't seem to get a GI doctor and geneticist on board.

It is so frustrating because I already got the authorization for

both on the same hospital but they still haven't scheduled him for a

consult, and they are telling us that it usually takes months to get

an appointment. I don't know if this is how the system works here,

maybe i just got used to having his medical needs get addressed

right away when we were in the Philippines, talking about getting

spoiled hihihi. Anyway, his last check-up did not go very well, endo

said his growth is poor and the dilemma is he can't say whether its

his body that is not producing growth hormone or is it because he is

not getting enough nutrition that's why he's not producing growth

hormones. It's really frustrating because we have been in such a

standstill trying to get answers, the good thing though is that he

is gonna go ahead and do a test where Angelo will have to fast for a

day and then stay in the hospital for 4 hours to do the test. At

times I feel so inadequate because i'm suppose to know all this test

and all the things that pertains to my son's condition. But

everytime we go to the doctor my mind goes blank and I can't ask the

questions that I'm suppose to ask. I read all your emails and I am

so amazed at all this massive info that you guys share with each

other. You are all a superb mom! So right know we are still at a

standstill, Angelo's current weight is 24 lbs and he's 68 cm. Very

much active and through God's grace very much healthy. Well, that's

about it for now, i'll be looking forward to hearing from all of you.

God bless,

Rraine

February 14, 2006

Rraine,

Well it sounds like you guys are lucky to have good physicians! I say lucky

because not all of us have been diagnosed right away and then our doctors

said no treatment was required and we were sent on our merry way! Thank

goodness for this group and MAGIC.

My daughters growth was very similar to Angelo's. She was trying to catch

up, but just couldn't. She was always active and mostly on target with her

milestones as well. That being said, she never really ate much and it was a

constant worry to me that she wasn't. Finally, when she was nearly 2 we had

a feeding tube placed. It made all the difference in the world! Her growth

immediately took off. She went from off the charts to the 25% in months.

It was amazing.

We never realized what energy was until after her tube! We thought she was

active before but man oh man, give the kid some calories and she is was off

and running!

Many of our children require more calories than the average child to grow,

though they usually produce normal amounts of growth hormone. It simply

seems they need more than most to grow as well as others. Does Angelo eat

well? How old is he again? 24lbs and 68cm? Are you sure that conversion

is right?? Alyssa was 68cm and about 12lbs when she was a year old. Her

picture is in the photos.

You have found a great bunch and I hope you feel at home here!

Dayna, Mom to Alyssa, 4

_____

From: RSS-Support [mailto:RSS-Support ] On

Behalf Of lorraine

Sent: Monday, February 13, 2006 3:12 PM

To: RSS-Support

Subject: Thank you for the warm welcome!