RE: RSS - FROM COLOMBIA

[Guest guest]

Hi, . I'm so glad that you found us. This is going to be the

best source of information that you can get for your baby. Between

us " experienced " and not-so-experienced moms and dads, as well as

the info you can get from the Magic Foundation, you will learn so

much and learn not to be so afraid.

The best thing you have going for you now is a doctor who is willing

to stand by you and support whatever your son needs. It would be

great if she could contact Dr. Madeleine Harbison at Mt. Sinai

Medical Center in New York City. She is the expert on RSS along

with Dr. Stanhope from London, England. Dr. H, as we so fondly call

her, is more than happy to confer with other doctors and offer

advice and a protocol to follow. Of course, if you decided to see

her in the US for advice, she would do that, too. She is one

amazing woman.

It sounds like you are doing so much for your little guy. He is

walking, talking, and trying to eat. He is obviously very loved.

One thing that has helped our kids, but I don't know if you can get

it in Columbia, is a medication called Periactin, or

cyproheptadine. It is an antihistamine, but it can have the side

effect of increasing appetite in our kids. You might want to ask

your doctor about this.

I look forward to hearing more about your family. Understand that

it is very normal to be angry, frustrated, upset, concerned and

worried. We have all done that. And we still sometimes feel that

way. But we are all in this together and you can be with us, too.

Welcome to our group!

Jodi Z

[Guest guest]

:

Hi this Betty from Mexico, my son is RSS and is 6 years old. Welcome to the

group and hope we can exchange experience, this list serve is so great. Any

thing you need I will be here.

Betty

[Guest guest]

Hola !

Your English is great - I also moderate the Spanish support group

(yahoo en espanol, grupos, apoyosrsrss) and there is a mom,

del rio, from Popayan with a son Guillermo who is 1.5 years

old. There are also parents from Mexico, Peru, Chile, ARgentina,

Brazil, Puerto Rico, Spain etc. Let me know if you want me to email

her with your email. I am sure she will get back to you and help

you out! My daughter Emerence is 34 months old, 25 lbs and 32 " .

She is a little chunkaroo - she all of sudden gained 3 pounds

recently.

I know how frustrating things can be. Some moms work (I do) but

others do not. My daughter is also very mild. My daughter goes to

daycare (jardin infantil) and the teachers know what to watch for.

If your nana wants to learn then that is good and then you will have

a good choice to make.

Chao por ahora!

, mom to 6 and Emerence

>

> Dear All,

>

> My name is and I have a baby boy called Nicolas who is 17

> months old and has been diagnosed with RSS recently. Nicolas was

> born with 1150 gm and 37 cm on his 34 week but with a restriction

of

> 5 weeks. His actual weight is 6.5 kg and 64 cms. We visited

> the 'best' endocrinologist doctor in Bogota for more than a year

and

> he told us that Nico has a growth problem, he talked to us about

the

> GHT but he never mentioned the syndrome. A few weeks ago we

traveled

> to Medellin, another city in Colombia, an another doctor confirmed

> us the Syndrome. It has been really difficult and hard for us to

> find that our baby will need a very long treatment for him to

grow.

> We have been feeling lonely, sad, frustrated, etc. as it is not a

> very common thing to happen here. Our doctor is great and she will

> be with us the whole treatment, but as parents we are looking for

> the best information, the best resources and the best tools for

> accompanying our son in the treatment. I sent an email to the

Magic

> Foundation and Katy Frissora replied to my email with very helpful

> information. It has been great to me having the chance to share my

> worries, questions, etc. with people that have felt the same way

as

> me.

>

> Nicolas is a really intelligent baby and the doctors had agreed he

> is neurologically in good shape. He has his fifth fingers curved,

> his teeth are really tiny, he has hyposphadia, he has food

aversion

> (it is terrible!!!!) but he has good motor skills, he has been

> walking since he was 14 months. He is not very good on

talking...he

> can say (in spanish obvioulsy) " mother, father, the name of his

> nany, sea, tree, cookie, water, bus " and makes some animal noises.

>

> As far as I have been able to read your messages there is a

shared

> point about feeding. Any advice for making food not such a

nightmare

> for him and us? he eats actually good but the first spoon is

always

> crying and begging him to open the mouth. He is not able to eat

> solid things as he trows out them. Any suggestion for this?

>

> I was also thinking if there is a centre, foundation, hospital,

etc.

> really specialised in the RSS that you think I can visit with my

> husband and the baby. We are sure that the GHT will be given to

> Nicolas locally but we are worried about other things realted to

the

> syndrome that we would like some really specialised on it to talk

to

> us about it. We are willing and decided to do our best on helping

> Nicolas to feel happy and proud of him.

>

> I am a working mother and ever since the diagnosis, I have feeling

I

> want to quit my job and be with him the whole time. I want to ask

if

> for the treatment this is needed. We need our work and my income

but

> I definitely prefer to loose material things if Nicolas really

needs

> her mother to be the whole time with him.

>

> I am glad I can share my feelings with other parents. Thanks for

> this space and for the time you all have given to this share point.

>

> Any advices are welcome.

>

> Thanks a lot

>

> Escobar

> Bogota, Colombia

>