Haven't Been in Touch - Child has RSS

[Guest guest]

I haven't been much support to this group lately and I apologize for

that. Since my daughter has been born, my son Colin- has made

major improvements. I may get some negative return for this, but I

need to share my experiences in hopes that some of your children

will benefit.

My son was 5.5 at birth and less than 19 inches tall. By a year he

was only 9 1/2 pounds and by three he was only 18 pounds. We made

numerous attempts to feed him fattening things: butter, oils, fat,

Duocal, appetite enhancers, Cream in the bottle, pudding and cream

chesse bars etc. He didn't sit up until over 18 months and

walking... not until he was almost three. He had extensive testing

at three months and finally by 18 months we were told - RSS. Great -

finally a diagnosis.

As many of you feel, looking at your child's ribs and feeling

helpless for them, you try the last resort. We agreed tot he g-tube

surgery and fought to get insured growth hromones. What a success.

After his surgery, he gained 13 pounds from the Pediasure tube

feedingsd at night and ate barely anything during the day. We were

happy b/c of the weight gain.

After the intial weight gain, we had nothing. He started to eat and

could express himself more, but not enough. We got him started on

speech, physical and occuapational therapy since in NJ - early

intervention stops at age 3 so we had him register in our school

district for him to get it. Anyway, what a year of improvements, but

not weight. We were not going to stress about it since he was still

maintaining a solid 32 pounds at age 4. My daughter was born in July

and happens to be aggressively growing. Now almost a year later, she

and my son have eating competitions. Last week the surgeon removed

the g-tube. In a week, he has gained over a pound. We question if

the button was not causing him to feel full. He has been non-stop

eating since its removal.

I am hopeful that this weight gain will continue and he will live

his life to the fullest capacity. I just wanted to share my son's

story with you all in case you think you are experinecing the same

thing. For months, my son would tug at the button and play with it,

but b/c of his underdeveloped speech could not express to me what he

wanted to say. Who knows, I just wanted to share.

Good luck to everyone and thank you for the courtesy of listening as

long as I was a member.

M. (mom to Colin- 4 1/2 RSS and Gillian 12 months non-

RSS)