Re: Endo appointment

[Guest guest]

Dawna - thanks for your kinds thoughts about Max and Ian. Thank you

too for keeping us posted on Noah. I think you are so on target

with his healthcare and you should be very proud of yourself. You

certainly are a quick learner! If I read your post correctly, it

sounds like this Endo may be a great Doc. He seems willing to learn

more about RSS at least and you seem like the person that will help

him learn too - which is so much a part of our jobs!

Keep us posted - okay? Would love to hear the test results.

- H

>

> 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

>

[Guest guest]

hey dawna!!

glad to hear your appt with the endo went well!! keep us updated on

the test results!! ((HUGS))

jodie c

[Guest guest]

Hey Dawna,

Thanks for your email, I am glad to hear that everything went fairly

well in London at the endo, I am glad the testing and IV went

smoothly, it is amazing the difference when they are used to dealing

with kids....sounds like you are on track for everything, it must be

a relief for you. Your family doctor sounds pretty good if they are

going ahead with testing....which tests are they doing?? I was also

glad to hear that you have asked for a new peds Dr.....and that your

and your husband aren't related...LOL...don't you hate some of the

stupid questions that they ask!!!

We have had a frustrating couple of weeks, Josiah threw up his NG

tube a second time...which was while I was driving down the road by

myself and seconds away from getting on to the highway, it was really

scary, frustrating and messy. We had physio and OT appointments on

Monday, a gastric emptying test, and a surgical consult on Tuesday, a

dietitian appointment yesterday and we see the endo this afternoon.

Josiah was weighed yesterday and after all the puking he has lost 11

ounces in 2 weeks, I was so frustrated and discouraged about

this....he has totally lost his appetite and I have to push way to

hard to get him to eat two crackers and then he won't eat again for

hours. I started testing his ketones (thanks to all the advice of

the veterans here) and he was negative at first then testing small to

moderate for a day. We just put him on his pump extra long and that

resolved it for now. We did come to a realization though yesterday

that I had been taking donperidon....which is a gut motility drug but

I was taking it because it also increases milk supply as a side

effect, so I have been on it for almost two years and I have been

breastfeeding Josiah during that time....I just weaned him 3 weeks

ago, so in effect he was geting the drug through my milk and now he

isn't getting it, and that is when his puking really started picking

up....so we are convinced that he has a gut motility problem which is

making him too full all the time and causing his puking with the

bolus feed.....so I am going to pop by to see the GI doc while I am

at the hospital today to see the endo, to hopefully get a RX for

Josiah for that same medication.

Some days are so frustrating but I just keep hoping that things will

get better, but after reading all of the posts everyday I know this

won't be easy and it won't be short lived.....Thanks to everyone for

all your posts, I really enjoy keeping up on what everyone is doing

and how things are going....I don't often reply but I think about you

all often and I have learned so much from you all already.

R

Mom to Josiah 28 months RSS NG tube

>

> 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

>