g-tube

[Guest guest]

Meribeth:

Is Dr. H. following TJ's progress? If not, do you have another endo. who

is? My guess would be that Dr. H. will discuss with you the probability of

a g-tube if TJ is not gaining well on Periactin. Then again, it has only

been three weeks. Is he at the maximum dose yet? It usually takes three or

four weeks to work up to the maximum and then it would be a little while

before you would see a significant increase in weight. At least you have

those two ounces!

There is a lot of thought that goes into placing a g-tube. It is very scary

and we parents have been through a lot before it is done. For us, anyway,

it was just a confirmation of the long-term medical needs that Max would

have. But once we took that step, wow! What a relief it was! In fact, it

became more of a convenience thing than a hinderance. But I remember only

too well what we went through before making that decision.

Unfortunately, Max was dependent on tube feedings for 11 years. That is not

the usual RSS length of time. He eventually ate well during the day, but

his hypoglycemia prevented him from going all night without food. Now,

however, he is happy and eating well and shows no signs of hypoglycemia for

the most part.

Use this site to get more information. Everyone here is great at sharing

information. By the way, Max was started on tube feedings via ng tube at 2

1/2 months, before diagnosis, and then stopped and started again, until

finally we met Dr. H. when he was 14 months and she made us start up again

and stay with it for years. We used the ng tube until Max was 4. Max did

not mind it, in fact, he LOVED his " tube. " If I had it to do over again, I

would have gone the g-tube route at 1 1/2 years when we realized we were in

it for the long haul.

Jodi

Re: Dr. Harbison's Protocol for RSS Treatment - a

" brief " summary

> Craig,

>

> Thank you for your excellent post. My son was diagnosed at the MAGIC

> Conference by Dr. H as having RSS. Up until then his other endo.

> told us he had some type of yet unnamed growth disorder.

>

> Anyway, TJ is quite small, was 2.2 lbs at birth and now at 20 months

> is 12.7 pounds. He is taking Peractin and while he eats well, is not

> showing much of an increase. Over the past 3 weeks he has gained 2

> ounces. My question is is how many RSS kids have g-tubes and at what

> age did they get them?

>

> Meribeth

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