Re: Paediatrition Deb

[Guest guest]

Hey Deb,

Yes you definately could be right ... he probably doesn't want me to

pin all my hopes first of all on the Periactin to put weight on Noah

and then the GHT for all the rest. But really we all do need the

hope! You know I really found it very inspiring that Max is 5'5 " !!!

And Adam at 13 is 4'7 " it is all we could want. And not only height

but all the rest of the benefits of the GHT. We all want the best

for our children and to make life the best it can be.

The psychologist sure didn't know what it was like to deal with a

rare disorder!!!! People are so ignorant sometimes.

I am so sorry I didn't mean for that snow to get down there! I was

trying very hard to keep it here, but we have had such wicked winds

I'm not surprized that it blew it your way EH!!!! LOL

Hey isn't it funny it's only Canadians on here tonight! LOL LOL

Hope all the rest are enjoying their Thankful Holiday!

Dawna

>

> Dawna

> I was wondering if the ped. was just being cautious regarding the

possible benefit of GH. I know my endo said " I can't guarantee you it

will make one bit of difference to his growth, but I do know in 6

months I can tell you for sure " .

> I suspect he doesn't want you to put all your eggs in one basket.

> Mind you, Adam's growth curve jumped considerably after 3 months

and it was deemed very helpful. In fact I was guaranteed Adam would

only reach 4'7 " without the GHT (interestingly enough he is 4'7 "

right now, I can't imagine him that height as an adult.......) but

now with the GH, my endo is guaranteeing 5 feet for sure and more

than likely a bit more than that.

> I'm glad it went well and I am not surprised you were told you knew

too much. I think these doctors feel threatened, I had a psychologist

tell me one time that I was neurotic for having a list of Adam

milestones already typed out and I had a big binder with all

necessary medical documentation!! The woman was nuts!

>

> Deb

> PS we have snow now, and it continues to snow.......thanks a whole

bunch for sending it this way eh??!!!

> LOL

> Paediatrition

>

>

> Well we had our first appointment with our new ped today. It

went

> fairly well, but I really don't have a relieved feeling yet. I

still

> feel like we are carrying the burden of the knowledge and I would

> have been happy to have that lifted a little. Does anyone really

> feel that way though?

>

> There were some definite good points from the visit. The first

being

> that we will be starting Pariactin tomorrow I believe if the

pharmacy

> can get it by then. I have forwarded the message from Jodi to H

to

> my email and have the information written by Dr. H. When the

Doctor

> today was mentioning doses and to start off at 1/2 dose in the

> morning and at night, I mentioned to him that it had been

suggested

> to start off with just the night dose and he agreed to that.

I'll

> have to see when I get the actual prescription what the

measurement

> is. He didn't seem to have much faith that this will be the

solution

> to Noah's weight and did mention the possibility of a g tube.

Here's

> hoping the periactin will be enough to get us to the 15% weight

to

> height and then that combined with the GHT will be enough to keep

us

> away from the tube. On the subject of GHT ... I got the

impression

> that this doctor felt the GHT might not be effective either, but

time

> will tell with that and that is one decision we have already made

and

> Noah will be getting that when the time is right. This doc wants

me

> to give him a call after Noah has been on the Periactin for a

week to

> see if I think it is making any difference at all and then wants

him

> to come in one month after to get weighed. We went to his clinic

at

> the hospital for this appointment and he said that that is where

he

> wants us to come back for the next weigh in so it is on the same

> scale ... that was another relief that he will be watching the

weight

> closely and properly. Noah weighed 19 lbs 8.7 ounces ... this is

the

> first time he has been weighed on such a precise scale (that

includes

> the two from the endo's office). I took all the articles that we

> have from Magic and the list of articles available and any other

> information that I had gathered. The doctor told us that we knew

too

> much which we found quite funny! Hopefully he will be as well

> educated when we are done with him.

>

> All in all a fairly good meeting and at least I can feel

comfortable

> that this doctor will learn and keep up with Noah's progress and

we

> won't be left in the dust.

>

> Dawna

> 13, 11, Kaitlyn 8 and Noah 3 RSS

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