Re: Max's visit with Dr. H

[Guest guest]

Wouldn't that be phenomenal if he reached 5'4'! Jodi, I remember

about two or three years ago, when it appears he was GH resistant,

that you worried he wouldn't reach 5'0 " . Do you remember that? Now

look -- 5'2 " !!!! And still growing. I am so happy for him!

But I can't believe that Cisapride is being removed permanently -- I

thought they would at least still let the specialists use it. Man,

we all know some kids for whom NOTHING has worked except Cisapride.

Those poor parents must be beside themselves. I wonder if people

can stockpile a med in a situation like that.

Jenn

>

> Today my husband took Max to Dr. H. He said it was a good visit

> overall. She was with them for over an hour and was pleased with

> his growth - but she said he is took skinny! (I only wish that

> would happen to me!) Anyway, Max is now 5'2 " and almost on the

> growth chart. She increased his gh and said that we are nearing

the

> end of the shots. I don't know what that means. I think we will

> know more after the next visit when he has a bone age done.

>

> Two things to note:

>

> 1-Cisapride is being taken off the world market. That means that

it

> will no longer be produced anywhere and Dr. H. has to discontinue

> her protocol for that medication. She gave Max a schedule for

> weaning him off of the med over the next month or so. She is now

> talking about using Zelnorm or one other medication that helps

with

> retching. Retching does not seem to be one of Max's issues, but

> frequent nausea and spitting up does. We will see when he is off

> the Cisapride.

>

> 2-After 13+ years of gh shots in his thighs, Max has developed

some

> sort of fiber that she can feel in his legs. This is making his

> shots painful, along with the diluent that the Humatrope is mixed

> with. Max can still use his legs, but she showed him other places

> to try. I just thought you'd like to know that this can happen

over

> time, but a LONG time.

>

> So, it looks like Max may, in fact, pass the 5'4 " mark that we

hoped

> he would get to. That would be just wonderful. I'm anxious to

see

> what the next year will bring!

>

> Jodi Z