Endo appointment

[Guest guest]

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