RSS - FROM COLOMBIA

[Guest guest]

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