P.S. on Re: new SGA infant

[Guest guest]

P.S.

One thing you do want to watch out for now is whether your child is having

any signs of hypoglycemia, especially when not eating much, This can

damage a developing brain, so it would be wise for you to look into ways of

getting calories in as soon as possible. Please don't take using

alternative means to feed your child as some sign of failure as a mom - RSS

and perhaps other syndromes may have a hypothalmus problem which hinders

appetite, so the old condemning arguments for failure to thrive that " if

you aren't spoiling their appetite they'll eat " really are destructive to

the physical and emotional health of RSS families. Like the old flat earth

ideas, some otherwise intelligent peoples' views on scientific reasoning

can fall way short!

Inga

........

,

My son wasn't diagnosed with Silver Syndrome until he was about 5

months old. We had actually been ng-tube feeding him, and when they tried

150kcal/kg/day, he would vomit and poop the previous meal, so we were able

to go back to 130 when we got the diagnosis (since his body has a form of

dwarfism, he couldn't use the extra cals before giving him growth hormone).

The thing that decided it was noticing that one leg was much thinner than

the other. The geneticist hesitated to give this diagnosis at first

because she hadn't noticed the assymetry (I had to point it out) and

because there is no definite genetic test for RSS so she wanted to be very

sure before calling it this.

My son was 3 pounds 5 ounces taken 1 week before my due date (and we knew

exactly when I got pregnant!). He only weighed 10 pounds at 1 year. Now

with growth hormone and a feeding tube along with a fundoplacation which

keeps him from reluxing/vomiting, he has actually gotten chunky and grown

quite a bit. Many of the treatments are the same for RSS and SGA, so I

think you may want to look into them. One is Periactin for appetite or

tube feedings. Another is growth hormone. And now Lupron to delay

premature puberty. Our son is an extremely intelligent 10 year old now -

he actually tested at college level for social sciences! So don't ever

give up hope!

Inga

At 06:34 AM 10/5/2005 +0000, you wrote:

>Hi

>I am new to the group. My daughter is SGA- born weughing 3 pounds 14

>ounces with head and length also well below 3rd percentile. She

>doesn't seem to have russell silver syndrome but it has been

>impossible to get her to eat since she was born. Is SGA similar to

>RSS, are the issues similar? She is now almost 4 months and I have

>difficulty getting her to eat. She is just on 3rd percentile on the

>height for weight curve. She is 22 height-3rd percent and 9 pounds 6

>ounces- below 3rd percent. She is on reglan, pepcid and prevacid for

>reflux. But I don't know what to do because she is now eating less

>than she used to. The most she has eaten is 18 ounces ina day on

>24kcal/ounce. The only way I can get her to eat is in a sleepy state.

> She will only eat about 40ml when fully awake. But now she is

>starting to refuse to eat when sleeepy as well. Is this similar to

>experiences other people have had? Does anyone know doctors in the

>Los Angeles region who knows how to deal with this? Her growth is

>starting to level off. She never demands for food. I currently feeed

>her every 4 hours and it takes an hour to get her to take anything.

>Does anyone have some advice for me. She is getting a gastric empting

>study tommorrow. My pediatrician said that she doesn't think giving

>her more calories will make her grow any better- this doesn't sound

>right to me. My pediatrician said that she will have growth spurts so

>it is ok for her not to gain good weight occasionally and that she may

>improve as she get older. But her eating seems to be worsening. Does

>anyone have some advice?

>Thanks,

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