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RE: [SPAM] RE: Meg Hefner please

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The doctor also asked what time she gets her injection at school.

said 4:45. The Endo said that is too early. Rick called the school

and was told by the PM supervising nurse that, no, is confused

because she gets her injection at 7:30. Everything else (ibuprofen, etc.)

is given at 4:45. Funny, when I asked the dorm staff about that at a

meeting on Wed., she indicated gets everything at 4:45 when they go

before dinner - including her GH injection. Rick called and talked to the

supervising nurse on Thursday, who checked 's charts, and told him

they have been giving everything at 4:45. I'd like to ask, " Who is

" confused " here? " !?!?!

Long story short: is NOW getting her injections at 7:30PM. She was

going with no snacks/food from 11:30 lunch to 5:15 dinner. Receiving the GH

injection right before dinner was probably the worst time to be giving it.

We feel that the GH was being converted into insulin-like factor [blah,

blah] - sorry, can't think straight enough this late to put the correct name

on it! Rick told me that was the Endo's concern when told the 4:45 time

frame.

Just one more frustration with the school. When moved to 6th

grade/Middle School dorm, the health center changed her meds time earlier.

I told them the injections needed to be after she ate. I was told that

would be fine. When I take her on Sundays, it is usually around 6:00pm and

they do her injection. I have no problem with that because she has already

had dinner. The duty nurse is not happy that I brought this to the

attention of the supervisor. But we are talking about injection therapy -

which is not cheap; growth hormone - which the Endo nurse calls " liquid

gold " due to the cost; and the discomfort of receiving an injection

that wasn't benefiting her for the reason prescribed. I feel awful for

because she has been great and even accepts the injection in areas

other than her thighs now. She has had them in her arms (enough " meat "

there now to do that) and even in her stomach. To have gotten brave enough

to make that change, and then have nothing come of that effort - just

devastating.

Anyway, I'm hoping we can convince to wait for the " puberty stuff "

and get more growth first. Her wrist x-ray still shows 2 years delay,

meaning we can continue to push the growth issue. I don't think she fully

understands all the " stuff " that goes with getting breasts. I'm not sure

I'M ready for that yet!!

Seems like I'm never ready for the next thing, then it jumps up and bites me

on the butt! Things become more and more tense with so many different

aspects of the school. But right now, it is the only place locally that

comes close to meeting her needs for communication (ASL). But then again,

Pam, I have something to e-mail you off list. You should enjoy reading it!

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

pamela.ryan@...

Sent: Saturday, January 20, 2007 11:15 PM

To: CHARGE

Subject: [sPAM] RE: Meg Hefner please

Marilyn,

I am sorry I am so late on the uptake here....

I am sorry you were disappointed with 's results--it sounds llike she

had specific expectations, as well!

I would also be concerned if she was getting the injection properly, too.

pam

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shit lol i no i shouldnt say it but that makes me think of martha with her

katie and how they changed her meds around all the time martha if ur out

there pls chime in but i think that was growth stuff to

>

> The doctor also asked what time she gets her injection at

> school.

> said 4:45. The Endo said that is too early. Rick called the school

> and was told by the PM supervising nurse that, no, is confused

> because she gets her injection at 7:30. Everything else (ibuprofen, etc.)

> is given at 4:45. Funny, when I asked the dorm staff about that at a

> meeting on Wed., she indicated gets everything at 4:45 when they

> go

> before dinner - including her GH injection. Rick called and talked to the

> supervising nurse on Thursday, who checked 's charts, and told him

> they have been giving everything at 4:45. I'd like to ask, " Who is

> " confused " here? " !?!?!

>

> Long story short: is NOW getting her injections at 7:30PM. She was

> going with no snacks/food from 11:30 lunch to 5:15 dinner. Receiving the

> GH

> injection right before dinner was probably the worst time to be giving it.

> We feel that the GH was being converted into insulin-like factor [blah,

> blah] - sorry, can't think straight enough this late to put the correct

> name

> on it! Rick told me that was the Endo's concern when told the 4:45 time

> frame.

>

> Just one more frustration with the school. When moved to 6th

> grade/Middle School dorm, the health center changed her meds time earlier.

> I told them the injections needed to be after she ate. I was told that

> would be fine. When I take her on Sundays, it is usually around 6:00pm and

> they do her injection. I have no problem with that because she has already

> had dinner. The duty nurse is not happy that I brought this to the

> attention of the supervisor. But we are talking about injection therapy -

> which is not cheap; growth hormone - which the Endo nurse calls " liquid

> gold " due to the cost; and the discomfort of receiving an

> injection

> that wasn't benefiting her for the reason prescribed. I feel awful for

> because she has been great and even accepts the injection in areas

> other than her thighs now. She has had them in her arms (enough " meat "

> there now to do that) and even in her stomach. To have gotten brave enough

> to make that change, and then have nothing come of that effort - just

> devastating.

>

> Anyway, I'm hoping we can convince to wait for the " puberty stuff "

> and get more growth first. Her wrist x-ray still shows 2 years delay,

> meaning we can continue to push the growth issue. I don't think she fully

> understands all the " stuff " that goes with getting breasts. I'm not sure

> I'M ready for that yet!!

>

> Seems like I'm never ready for the next thing, then it jumps up and bites

> me

> on the butt! Things become more and more tense with so many different

> aspects of the school. But right now, it is the only place locally that

> comes close to meeting her needs for communication (ASL). But then again,

> Pam, I have something to e-mail you off list. You should enjoy reading it!

>

> Friends in CHARGE,

>

> Marilyn Ogan

>

> Mom of (14 yrs, CHARGE+ JRA)

>

> Mom of Ken (17 yrs, Asperger's)

>

> Wife of Rick

>

> oganm@... <oganm%40insightbb.com>

>

> _____

>

> From: CHARGE <CHARGE%40yahoogroups.com> [mailto:

> CHARGE <CHARGE%40yahoogroups.com>] On Behalf Of

> pamela.ryan@... <pamela.ryan%40perkins.org>

> Sent: Saturday, January 20, 2007 11:15 PM

> To: CHARGE <CHARGE%40yahoogroups.com>

> Subject: [sPAM] RE: Meg Hefner please

>

> Marilyn,

> I am sorry I am so late on the uptake here....

> I am sorry you were disappointed with 's results--it sounds llike

> she

> had specific expectations, as well!

> I would also be concerned if she was getting the injection properly, too.

>

> pam

>

>

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