puberty

[Guest guest]

Wow. Martha, I'll be looking for the responses to this one. Thank you so much

for asking.

Weir

lewcap@... wrote:

I've really wondered whether to send this to the entire group or just to

Pam since much of it is explicitly related. However, it's such a basic

issue that so many of us will/are facing, I'll throw it out for all comments.

saw her endocrinologist yesterday. I have yet to hear from the dr

and the teacher who accompanied her, though the Perkins' nurse and I

had a long, long chat today (alas, the dr said she'd call here and didn't

send P. her full notes, so the nurse doesn't know much more than I do).

Ugh. Enough immediate background.

started on small doses of Premarin some time ago (no longer

remember when) and started breast development, etc. At yesterday's

appointment, the dr. added 5 mg of Provera. P's nurse wasn't sure if a

period would occur 5 or 10 days later after taking the new med. The plan

is to give her the Provera every few months.

The only other young adult I've met who's more or less at 's stage

of mental development (I want to say strength!) has a mother who refuses

hormones, and I just don't know what to expect.

Pam, and all of you, how do we/I prepare for this? I haven't a clue.

Though she's been through so much, she has not seen much blood;

when she does, she ALWAYS asks for scissors and to cut. She doesn't

freak out, but to her, scissors are the cure!

Then, there's the timing of the initial dosing. The dr. has it set for 4/25.

flies home on 4/11 and goes back to P. on 4/29, then goes on her

senior trip May 17-20; we especially don't want the latter messed up for

her or the staff. After that, she'll return to Missouri to start off in her new

house 3 1/2 hours from home, and I contemplate that this move will be a

huge upset for her. I think I need to discuss changing the timing of the

initial dosing.

I talked to the nurse, too, about pads vs tampons. Afterall, has had

hearing aids and a mouth piece for speech,...... I just don't know what to

do.

Please send all ideas and comments. If anyone has experienced this,

please share.

Pam, if I don't hear from you tonight, I'll call in the morning because I

hope to talk with the dr. Alas, we're due large hail and tornado alley rears

its head, so the computer could be off limits for me later. We'll see.

Thanks to all ----- Martha

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[Guest guest]

We finally found an Endo who knows of CHARGE. They saw Patty and said that

she needs to be on more calcium, at least 1200 a day for her bones. She is

also going to have a dexi scan because Patty is being followed for osteopenia.

They are also took a blood test to look at things including to see what her

growth hormones levels are. Although she is done growing she still needs some

hormones to keep her body and organ healthy. I understood it there but can't

explain it here.

Patty also saw a orthopedic doctor, who doesn't know CHARGE. I hate that.

She went because of discomfort in her knees. They took xrays and because of

her hypotonia her knee caps aren't in front but are kind of to the side. The

muscles don't hold them in place. Back to PT. But that's good. I think they

were worse but now that she has inserts in her shoes it fixes her feet which

supports her knees.

For her being 20 you would think you don't have tto focus on puberty and/or

growth. Apparently that doesn't end.

Oh and not only did we increase her calcium we also put herr back on daily

vitamins with vitamin D.

Along with all this her new medicine is working so well her PMS is liveable

for her. All I have to do is tell her she is getting a bit emotional and she

stops, then goes and meditates. YEA.

Bonnie, mom to Kris 22, a very happy Patty CHARGE 20 and wife to

[Guest guest]

Hi Bonnie,

I am curious as to who you found for endo. Glenn sees and endocrinologist for

hypogandism. I brought in a very medically termed article about CHARGE for him

a couple years back. He didn't seem to interested and told me to follow up with

his primary for a couple of things I was questioning at the time. I have asked

his primary about a bone density because I read about the risk of osteoperosis

with hormone deficiency but she didn't feel he needed it. Nobody seems to work

together with the CHARGE syndrome and I if I can find a group of doctors who

will I am willing to switch Glenn as well even if it means traveling.

Thanks for sharing

Cheryl & , (11), Glenn (33) ChaRGE

Turk22082@... wrote:

We finally found an Endo who knows of CHARGE. They saw Patty and said that

she needs to be on more calcium, at least 1200 a day for her bones. She is

also going to have a dexi scan because Patty is being followed for osteopenia.

They are also took a blood test to look at things including to see what her

growth hormones levels are. Although she is done growing she still needs some

hormones to keep her body and organ healthy. I understood it there but can't

explain it here.

Patty also saw a orthopedic doctor, who doesn't know CHARGE. I hate that.

She went because of discomfort in her knees. They took xrays and because of

her hypotonia her knee caps aren't in front but are kind of to the side. The

muscles don't hold them in place. Back to PT. But that's good. I think they

were worse but now that she has inserts in her shoes it fixes her feet which

supports her knees.

For her being 20 you would think you don't have tto focus on puberty and/or

growth. Apparently that doesn't end.

Oh and not only did we increase her calcium we also put herr back on daily

vitamins with vitamin D.

Along with all this her new medicine is working so well her PMS is liveable

for her. All I have to do is tell her she is getting a bit emotional and she

stops, then goes and meditates. YEA.

Bonnie, mom to Kris 22, a very happy Patty CHARGE 20 and wife to