Some questions - from Colombia

[Guest guest]

Hello to all,

I wanted to ask a question that perhaps some of you could help me

solve. One of the symptoms that presents Nico regarding the RSS is

related to the hyposphadia. I understand, according to what I have

talked to the doctors, is that it can be operable when Nico grows

(some one told me that not before the 10 kg and I believe that it is

still too much time for it). Some of you have probably being into

the surgery... I want to know when it happened, if it is easy, if it

is difficult, does it has a permanent solution? do we and the

doctors have to take considerations and complications related to

syndrome?

Another thing that I wanted to know about the syndrome is it has

like scales and levels depending on the complications it has. I ask

it because Nico has some of the symptoms as his low size and weight,

the fifth finger on his hands are curved, his tiny teeth (for now he

only has three), the hyposphadia and the fight we usually have for

him to eat(the good thing, thanks to God, is that he usually

finishes his food and the portions are not so small). Nevertheless

their face is not so distinctive of the syndrome and other things

more.

Today we celebrate in Colombia the day of the Immaculate Virgin and

we do celebrate it with the " candle night " where we turn on candles

for the Virgin. Today I am going to light many candles in name of

all you, not only for the children, but also for all the parents who

are going trough this so that God give us all a lot of fortress,

wisdom, patience and love in order to go beyond obstacles and

difficult moments, so that He fill us with a lot of love to

accompany our children in the process and that He illuminates us

with fortress and a lot of faith.

A big hug,

- Colombia

[Guest guest]

hi maria!!

first off welcome to this great big family of support!! i dont have

an answere to your question since my son doesnt have that

characterstic. but i wanted to also say what a beautiful custom

your country has with lighting the candles. and thank you for

including us in it tonight!! ((HUGS))

jodie c (one of 4 jodis on the list)

(nicholas-7 1/2 nonrss, christopher-4 1/2 (will be 5 on the 15th)

rss 99.9cm 13.8kg periactin 6.8, ght genotropin .7, ADHD & OCD

possible, scoliosis 8 degree curve, athon-2 nonrss)

>

> Hello to all,

>

> I wanted to ask a question that perhaps some of you could help me

> solve. One of the symptoms that presents Nico regarding the RSS

is

> related to the hyposphadia. I understand, according to what I

have

> talked to the doctors, is that it can be operable when Nico grows

> (some one told me that not before the 10 kg and I believe that it

is

> still too much time for it). Some of you have probably being into

> the surgery... I want to know when it happened, if it is easy, if

it

> is difficult, does it has a permanent solution? do we and the

> doctors have to take considerations and complications related to

> syndrome?

>

> Another thing that I wanted to know about the syndrome is it has

> like scales and levels depending on the complications it has. I

ask

> it because Nico has some of the symptoms as his low size and

weight,

> the fifth finger on his hands are curved, his tiny teeth (for now

he

> only has three), the hyposphadia and the fight we usually have for

> him to eat(the good thing, thanks to God, is that he usually

> finishes his food and the portions are not so small).

Nevertheless

> their face is not so distinctive of the syndrome and other things

> more.

>

> Today we celebrate in Colombia the day of the Immaculate Virgin

and

> we do celebrate it with the " candle night " where we turn on

candles

> for the Virgin. Today I am going to light many candles in name of

> all you, not only for the children, but also for all the parents

who

> are going trough this so that God give us all a lot of fortress,

> wisdom, patience and love in order to go beyond obstacles and

> difficult moments, so that He fill us with a lot of love to

> accompany our children in the process and that He illuminates us

> with fortress and a lot of faith.

>

> A big hug,

>

> - Colombia

>

[Guest guest]

Dear Jodi,

Thanks for your email. Our doctor is trying to get us an appointment

at the National Instute of Health Bethesda in land where she

studied and worked before. If it happens, then we could travel to

the USA at the begining of next year (well depending on their answer

and interest in evaluating Nico). If it happens we could try to

travel to New York and visit Dr. H. In the meantime is there any

email address or contact details you could please provide me and I

could try to get in contact with her and see if it is possible for

her to see our baby if we travel to USA in the future.

Our aim is to search for the best doctors who could evaluate Nicolas

before starting the treatment and to find advice on how we have to

manage him. This is not common at all in Colombia and eventhough my

doctor is really good, I am sure she has not treated RSS before. The

good thing is that she is willing to learn as much as she can for

her to help us and to open us as much doors as she can for us to

feel we have all the tools for the GHT.

Best wishes,

- Colombia

> >

> > Hello to all,

> >

> > I wanted to ask a question that perhaps some of you could help

me

> > solve. One of the symptoms that presents Nico regarding the RSS

> is

> > related to the hyposphadia. I understand, according to what I

> have

> > talked to the doctors, is that it can be operable when Nico

grows

> > (some one told me that not before the 10 kg and I believe that

it

> is

> > still too much time for it). Some of you have probably being

into

> > the surgery... I want to know when it happened, if it is easy,

if

> it

> > is difficult, does it has a permanent solution? do we and the

> > doctors have to take considerations and complications related to

> > syndrome?

> >

> > Another thing that I wanted to know about the syndrome is it has

> > like scales and levels depending on the complications it has. I

> ask

> > it because Nico has some of the symptoms as his low size and

> weight,

> > the fifth finger on his hands are curved, his tiny teeth (for

now

> he

> > only has three), the hyposphadia and the fight we usually have

for

> > him to eat(the good thing, thanks to God, is that he usually

> > finishes his food and the portions are not so small).

> Nevertheless

> > their face is not so distinctive of the syndrome and other

things

> > more.

> >

> > Today we celebrate in Colombia the day of the Immaculate Virgin

> and

> > we do celebrate it with the " candle night " where we turn on

> candles

> > for the Virgin. Today I am going to light many candles in name

of

> > all you, not only for the children, but also for all the parents

> who

> > are going trough this so that God give us all a lot of fortress,

> > wisdom, patience and love in order to go beyond obstacles and

> > difficult moments, so that He fill us with a lot of love to

> > accompany our children in the process and that He illuminates us

> > with fortress and a lot of faith.

> >

> > A big hug,

> >

> > - Colombia

> >

>