Re: Endo appointment -

[Guest guest]

,

It's good that you figured out about the donperidon ... hopefully

that will solve this problem! Does Josiah like Fish crackers at all

(I think they are a good complex carb), some other snacky things that

Noah likes that are pretty good as far as snacks go are Bear Paws

(which come in a banana bread flavour) and Heinz Toddler cookies.

Noah will eat those toddler cookies 4 and 5 at a time. I realize

that right now Josiah may not be able to eat because of the gut

problem ...here's hoping you get that fixed up right away.

I think that I have a little education to do with our endo and I'm

going to try going through his nurse and if that doesn't work, it

will be through our new ped ... maybe both anyway ... double the

trouble. I was having a problem with the 15% weight to height issue

and Pat helped me out with this (this site is a wonderful thing) ...

gotta put weight on Noah before GHT.

Holy crow you have been busy ... I know how that is ... sometimes

comes in spurts. Let me know how your endo apt goes and if he asks

you " the question " . lol

Our doctor is doing the GI series on Noah on Thursday ... I'm going

to be talking to them about delayed emptying too (or does the GI

series cover it, it would help if I knew more) just to make sure it's

not there.

We'll plug along one day at a time!

Dawna

Matt 12, 11, Kaitlyn 8 and Noah 3 RSS

> >

> > Hello All,

> > I've been trying to catch up on the posts as it's been about a

week

> > or so. Hundreds of them! And I'm there now finally. I just

didn't

> > feel like I could post till I knew what was going on. Hope all

the

> > chillens ... Max and Ian and everyone are feeling better soon!

> > We went to our first endo appointment last week in London,Ontario

> and

> > it went well.

> > The doctor had some newbie doctors working with him and so that

was

> > who was the first to interview us. I found this a little

> frustrating

> > but tried to keep an open mind ... we all need a chance to

learn.

> > Anyway his English wasn't that great and I just don't think he

> really

> > knew what to do about us. He asked at one point if my husband

and

> I

> > were related ... I wasn't sure that I quite understood him

> (language

> > barrier and all) and my sister who was with me and I just looked

at

> > each other and him and I finally said " Pardon me? " Well we had

> heard

> > right ... we asked the REAL doctor later about that and he said

it

> > was a routine question when it came to genetic problems. OKAY!

I

> > was relieved that this endo is aware of RSS and that GH is a

> > treatment whether or not he is deficient. His only concern was

how

> > it was going to be paid for if Noah isn't deficient. We are

> prepared

> > for that and taking the necessary steps (which may include

Debby's

> > contacts, depending on our insurance and the Trillium Foundation).

> > He told us that Noah had to fast from midnight for the growth

> hormone

> > tests the next day that were to start at 8:30 am. I expressed my

> > concern about that and he said that he could have some water and

> that

> > they would be checking his sugar all through the test.

> > When they weighed him he was only 19 lbs which was disappointing

> > because the last time he was at the ped in the spring he was 20

lbs

> > by their scales. By the way, my husband went to our family doctor

> > last week and asked for a referral to a new ped. Hopefully one a

> > little more organized and will follow Noah more closely with

better

> > communication with us.

> > For the testing they had a fairly easy time putting in the IV

which

> > was a blessing and they couldn't understand why anyone had had

such

> a

> > hard time before finding his veins to get blood ... I think

that's

> > the difference between people who deal with peds and those who

> don't

> > much. Noah did very well for the whole morning ... got a little

> upset

> > a few times when they were trying to take blood from the IV port,

> but

> > I was very proud of him. In London (maybe other places too???)

> they

> > do this testing in the same place that young kids get their

chemo,

> so

> > they are used to having them around for hours and have a man

named

> > Terry that helps to entertain them doing crafts, reading books

and

> > many tv's with VCR's and Playstations to keep them busy. He blew

> > bubbles at Noah and let Noah too which helped alot, he watched a

> few

> > movies and did a little craft. They gave him a teddy bear and a

> > beautiful handmade quilt. My sister and I were shocked and happy

> > with the special treatment.

> > At the end of the almost 5 hours they checked the blood sugar

again

> > and he was at 3.4 ... they don't let you go until it is within a

> > normal range of 4 - 6. He had some fish crackers, a minigo and

> apple

> > juice and the next time it was up to 3.9. After another 15

minutes

> > and the rest of the juice he was at 5.9 so at almost 2 in the

> > afternoon we got to leave.

> > I left there feeling pretty good about the appointment and

testing

> > but since have become a little nervous that this doctor doesn't

> know

> > ALL he needs to know about RSS and GH. I asked him about weight

to

> > height ratio before starting GH and he wasn't concerned about

that

> > and I'm not sure if that was because of Noah's measurements or

his

> > lack of knowledge about RSS. I also asked about Periactin and he

> > said that he didn't like to use it in young kids. I didn't

receive

> > my articles from Magic before I went, so I'm going to make copies

> of

> > them and send them to his nurse that deals with the patients and

GH

> > and make sure they are well educated before we start any GHT.

> > Thanks for listening to my long winded account!

> > Dawna

> > Matt 12, just turned 11, Kaitlyn 8 and Noah 3 RSS

> >

>