Puberty

[Guest guest]

Doris, please try to talk to your doc about NATURAL hormones for your

daughter (estradiol) rather than Premarin, which is a drug, not a natural

hormone. Any chance you could talk with my sister in law here in CA who is

an endocrinologist specializing in hormones/ diabetes/ diet? She is the best

in the US, goes to NY for talks, TV shows etc but is here in Santa Barbara.

If you want to try calling her # is . she recently moved

offices so if that doesn't work try info: her name is Dr. Schwarzbein

in Santa Barbara, CA. She has 2 MD degrees; 1 in internal med, the other in

endocrinology. She will not put ANY of her patients on Premarin / Provera,

only natural hormones like our bodies make, estrogen and progesterone. She

is the most knowledgeable person about this, and especially with diabetes

would be the perfect source of good info for you. Unfortunately, most gynos

are clueless about real hormones compared to a hormone specialist. (sorry

gynos)

Good luck, Barbra M

[Guest guest]

Doris,

Patty has been on " The Pill " to start menses-she wouldn't do it without

medicine. Though it worked it has been both good and bad. The benefits

definitely outweigh the problems. Actually, I think it also changed her

physically. For a while she was getting a jiggly belly, believe it or not,

and now she has more muscle again. And YES she has PMS! It can be intense

but we have explained why she gets angry and irritated and she " tries " to

control it. I'm telling you, you can see it coming a mile away. The weird

thing is cramping, she complains very little of it though in my family it

gets horrible. I think she doesn't feel it like the rest. Good thing.

Though she has only one ovary because we have started her period there is

a minor hope that she might just have a little chance to get pregnant if she

wants to, or can. But more importantly her body is doing what it is supposed

to do.

Because she has few milk products, for her calcium intake we have her

drink orange juice with calcium (sometimes doesn't like it), tums with

calcium and we have a calcium supplement with magnesium and zinc. I don't

like to give her too much of that because it is over the counter and you

never really know how our children metabolize things. I like scientific

studies much better.

My husband has diabetes. He is on insulin and sometimes

glucoflauge(?spelling). When his numbers are high I could swear he acts like

he has PMS. He is such a calm, quiet man. When he gets cranky we tell him

to take his numbers. This makes him irritated too, but nine times out of ten

he is high. Check the PMS to her numbers.

And.... I am on Premarin, for a hysterectomy. I think it is wonderful!

It stops the hot flashes but it also helped me in the beginning with my moods

swings. I think it is wonderful for older people, I don't know about

children.

Any time there is a medication added to any one of us I not only check

with the doctors, but our pharmacists too. CHECK the interaction of

medications together. I don't just check with the doctor that prescribed it

but sometimes other doctors too. Then, if I am not sure, there's the

Internet.

A lower bone density is not good for our children, or for any one else,

but with all our children have sometimes you do have to assist them with

medication. Look at the long term effects with and without it. Then decide

from there.

I thought it was a big thing when Patty started her period. You know,

dealing with a " woman " thing and all. I thought it was going to be a huge

step. Actually, not really. It's just another day.

Bonnie

[Guest guest]

Barbara,

Do you know why she won't put anyone on Premarin?

Bonnie

[Guest guest]

In a message dated 6/22/2000 6:33:54 AM Pacific Daylight Time,

Turk22082@... writes:

<<

Do you know why she won't put anyone on Premarin?

Bonnie >>

As I'm not a doc I can't explain it as well as she can, but she explains it

well in her book The Schwarzbein Principle, available online & everywhere.

The main thing is, Premarin is a drug whose purpose is to " mask " symptoms of

menopause, whereas real estrogen is the real thing, Premarin is not a hormone

but a drug, estrogen is a natural hormone that we need for lots of reasons as

ours declines or if not made for some reason, or low. The studies linking

estrogen & breast cancer are all done w/ Premarin, not the natural hormones,

which are more physiologically correct for us. Hope that helps, Barb

PS the same is true for Provera (drug) vs. natural progesterone (hormone)

[Guest guest]

Doris,

If you want a good run down of the drug, go to www.rxmed.com go to the letter "P" and find the write up about Premarin. Sorry I can't be of more help but my little one is only 2 so puberty is a long way off!

Mom to Kennedy 2yr old CHARGEr, 10, 9, and wife to GraemeNew Brunswick, CanadaVisit the "Weir homepage" at: http://www.geocities.com/SunsetStrip/Palms/5716ICQ #1426476

puberty

Hi, It has been awhile since I have written. I just went and pick up the HR pills for . She is not producing enough estrogen on her own and they are concern about osteoporosis. This whole thing has got me crazy. I worry about the effects thepill may have. I don't know how she will handle this. I am not sure how much she understands. She has enough to deal with. Now PMS. I worry that have I done enough research is this the right thing to do. The Drs. Are not very helpful. They sure do stick together. They say they do not want to do any kind of calcium replacement other than the estrogen because of her age and weight (60 pounds). This is a kid who has baffled all of her Drs. With having type 2 diabetes. And they had to put her on adult meds. We are supposed to start the meds tomorrow but I think that I will wait and do some research on the med (PREMARIN) and see what I can find out.Bonnie, you did respond to us when we first started this whole thing. I was wondering how Patty was doing. I know that you said she has mood swings have that gotten better or worst as time has gone on?Thanks for listening and sorry to have carried on. There just always seems to be one more thing.Doris Behan (Mom to 17)For information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Hi Doris,

My 14 year old, Ellen was put on oestragen for lack of puberty and acute

osteoporosis. She had about 4 months of it and it was certainly producing

all those typical puberty things like painful breasts and mood swings.

HOWEVER, they have just had to take her off it because she now has a

thrombosis in her vena cava and in her central line, which may or may not be

related to the oestragen. I think it probably was not related as she has had

another thrombosis before she ever went on oestragen, but they couldn't take

the risk. So no more puberty. She is having bi monthly infusions of a drug

called pamidrinate for her osteoporosis and I think this may be helping

although we won't know for a year until they next do a bone density test.

I don't know if this helps but it is certainly worth thinking about

thrombosis especially if your daughter is not very mobile as appaently this

is a real issue with taking the drug.

Cheers,

Marea Howe

puberty

>Hi, It has been awhile since I have written.

>

>I just went and pick up the HR pills for . She is not producing

>enough estrogen on her own and they are concern about osteoporosis.

>This whole thing has got me crazy. I worry about the effects the

>pill

>may have. I don't know how she will handle this. I am not sure how

>much she understands. She has enough to deal with. Now PMS.

>

>I worry that have I done enough research is this the right thing to

>do. The Drs. Are not very helpful. They sure do stick together.

>They say they do not want to do any kind of calcium replacement other

>than the estrogen because of her age and weight (60 pounds). This is

>a kid who has baffled all of her Drs. With having type 2 diabetes.

>And they had to put her on adult meds.

>

>We are supposed to start the meds tomorrow but I think that I will

>wait and do some research on the med (PREMARIN) and see what I can

>find out.

>

>Bonnie, you did respond to us when we first started this whole thing.

> I was wondering how Patty was doing. I know that you said she has

>mood swings have that gotten better or worst as time has gone on?

>

>Thanks for listening and sorry to have carried on. There just always

>seems to be one more thing.

>

>Doris Behan (Mom to 17)

>

>

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>For information about the CHARGE Syndrome

>Foundation or to become a member please

>contact marion@... or visit

>the CHARGE Syndrome Foundation web page

>at http://www.chargesyndrome.org

>

>

[Guest guest]

Hi, that's great you have the Schwarzbein Principle--I will tell her tomorrow

night when she is here for dinner. Do you have a good endocrinologist? This

is above a gyno's field with diabetes, thyroid etc thrown in. Barbra

[Guest guest]

Donna,

Patty had no problem we knew of when little. She was extremely small but we

constantly were told that was due to illnesses... She never got on the growth

chart but as long as she continued to follow the curve they did not worry,

she was growing they told me. Then when she got around age 11 (I think it

was about then) she started puberty. Around age 12 or 13 she actually grew

about 5 to 6 inches. She hit 4' 11. " I had a feeling something wasn't right

though but I couldn't put my finger on it. She went all the way with puberty

except for menses. I felt like she stopped. I asked, and asked but they

would tell me she's not that late in starting. When she hit 15, and after

going to the CHARGE conference which I shared with them, they sent her to an

endocrinologist. An x-ray of her hand showed she was done growing, and had

been done for a while. Her blood tests came back within normal ranges. I

don't remember what the tests were. Next she had an MRI which found a

microadenomia in her pituitary gland which is a small benine growth probably

there since birth. Next was an ultrasound, which we could have done every

time we looked at her kidneys, and they found she is missing her right ovary.

Finally the doctors put her on the pill and all is working correctly.

They wanted her started because they said as far as she had come if she

didn't start there could be other problems when she got to her twenties. Her

uterus was developing tissue or something like that.

I am telling you this because some of the tests Patty had when she was

little could have shown what was going on, but they weren't looking then and

didn't know to look. Remember, every child is different. Know what to look

for but don't expect anything.

Patty is now 4' 11 " and weighs around 105. Her sister is only 5' 2 " .

Things are fine.

Bonnie

[Guest guest]

THANKS BONNIE I WILL SHOW THIS TO MY SISTER..HANNAH IS SMALL ALSO, BUT WITHIN THE NORM. MY SISTER IS SMALL SO I DON'T THINK HANNAH WOULD BE VERY TALL TO START WITH..BUT AT LEAST SHE CAN KNOW WHAT SHE NEEDS TO ASK DOCTORS FOR..HAVE A GREAT DAY AND AGAIN THANKS FOR THE INFO..

Re: PUBERTY

Donna,Patty had no problem we knew of when little. She was extremely small but we constantly were told that was due to illnesses... She never got on the growth chart but as long as she continued to follow the curve they did not worry, she was growing they told me. Then when she got around age 11 (I think it was about then) she started puberty. Around age 12 or 13 she actually grew about 5 to 6 inches. She hit 4' 11." I had a feeling something wasn't right though but I couldn't put my finger on it. She went all the way with puberty except for menses. I felt like she stopped. I asked, and asked but they would tell me she's not that late in starting. When she hit 15, and after going to the CHARGE conference which I shared with them, they sent her to an endocrinologist. An x-ray of her hand showed she was done growing, and had been done for a while. Her blood tests came back within normal ranges. I don't remember what the tests were. Next she had an MRI which found a microadenomia in her pituitary gland which is a small benine growth probably there since birth. Next was an ultrasound, which we could have done every time we looked at her kidneys, and they found she is missing her right ovary. Finally the doctors put her on the pill and all is working correctly. They wanted her started because they said as far as she had come if she didn't start there could be other problems when she got to her twenties. Her uterus was developing tissue or something like that. I am telling you this because some of the tests Patty had when she was little could have shown what was going on, but they weren't looking then and didn't know to look. Remember, every child is different. Know what to look for but don't expect anything. Patty is now 4' 11" and weighs around 105. Her sister is only 5' 2" . Things are fine.BonnieFor information about the CHARGE Syndrome Foundation or to become a member please contact marion@... or visit the CHARGE Syndrome Foundation web page at http://www.chargesyndrome.org

[Guest guest]

Let's not talk about this.

Oh, okay. Sigh. At twelve I had a sweet odd musically and mathematically

gifted child. He was extremely vague but good tempered and good humored and

fun. He had tics and other odd features but he was just a delight.

Now I have my current Enrique and while I do think that domestic violence

stuff did him some damage I also think puberty did. It has been a steady

two year decline. I would say the slide began around twelve and a half. It

is worse every month. I just hope there is an upward climb someday.

Salli

[Guest guest]

Everyone, Please...

Barb just left me wondering, how have any of you, lurkers and all, handled the

on set of puberty? What age did it start with your spectrum child and what

behavior changes did you see?

Thanks,

Sue in Michigan,

Mom to , 11, HFA, ADD

, 8, HFA, ADD

AIM ID: smg5862

[Guest guest]

Salli:

thats what we are here for!!

PA has become a haven for us!

No matter what is the problem

hang in there, though.

want me to come visit and really send him over the edge??

, Columbus, OH

Mom to:

, 15, possible bipolar

Annie, 12, so far so good!

JD, 8, severe ADHD, Autism, and my reason for getting up each day!

[Guest guest]

LALALALALALALALALALALA <---------This is me covering my ears and not

listening to this........

Penny - who does not want to face puberty again for a loooooong time.

[Guest guest]

May I join you in a chorus or two of the LALALALALALALA Song?

YIKES!!!!!!!!! I positively dread the idea.

Cinnamon

In parenting_autism@y..., " vegasgirl_35 " <nospam@p...> wrote:

> LALALALALALALALALALALA <---------This is me covering my ears and

not

> listening to this........

>

> Penny - who does not want to face puberty again for a loooooong

time.

[Guest guest]

> But it is all a big fat pain and I am sick of it.

Is he still compliant with the new meds, or no?

I'm amazed you haven't just packed his bags and sent him...anywhere.

Jacquie

[Guest guest]

> But it is all a big fat pain and I am sick of it.

>

I hear you Salli. Puberty is one big fat pain. Too bad we can't

just skip forward ten years. This implies that they would come

complete with education and socializing programing suitable for

someone in their twenties. Sigh. Oh well.

[Guest guest]

>

> Is he still compliant with the new meds, or no?

>

> I'm amazed you haven't just packed his bags and sent him...anywhere.

He totally refuses to take the risperidol (or however you spell the wretched

drug; I think I spell it differently every time). He also says he will not

take seroquel, another drug suggested by his psychologist. He SAYS he will

be more compliant about Buspar if risperidol can be avoided.

Salli

[Guest guest]

Hi, I would gladly jump in on this, but I thought

someone asked that we not discuss it?

I'm not sure now if that was a joke or not.

Please clarify.

Barb-who's already messed up enough

threads in the last week from being too sensitive.

[Guest guest]

Salli -

I think you NEED to be sick of it. He could have easily, albeit

accidently, pushed you down the stairs..

Then what?

We're behind you on whatever you decide, of course, but please know

that there are A LOT of people worried about you and your situation

and I think for good reason.

Penny

[Guest guest]

> He totally refuses to take the risperidol (or however you spell the

wretched

> drug; I think I spell it differently every time). He also says he

will not

> take seroquel, another drug suggested by his psychologist. He SAYS

he will

> be more compliant about Buspar if risperidol can be avoided.>>

Salli,

I think (based on what I see with , who is nonverbal) that the

risperdal makes you feel sort of spacey...maybe that is what Enrique

is objecting to? My guess would be that a kid who already has

sensory dysfunction could be very frightened by that. It's such a

good drug for aggression that it's a shame that he won't give it a

real try.

I am not a doctor, nor do I play one on the internet...but I do know

that our psychiatrist put on Tenex, which is an

antihypertensive drug, specifically because it has been so successful

in controlling explosive behavior. Has anyone considered it as an

adjunct to the BuSpar?

Just thinking...

Raena

[Guest guest]

Salli,

That's too bad. The risperdal is the one I've heard the most about for

aggressive kids. Maybe you should try talking to Enrique about his hitting

of you and the kids and tell him that this one might give him the control to

stop doing it. I must say though, I understand why he doesn't want to keep

starting over. I tried Celexa (I think that's the one) after mom died. The

Dr., not my reg. one, talked me into it because I was trying to handle

everything for everyone and wasn't holding together myself to well. Anyway,

I took just ONE tablet, and two days later, Mark still wouldn't let me

drive! I flushed the rest down the toilet! I didn't do nearly so bad with

the Effexor I take now, but it started at a half dose and worked up.

Actually, I stay between the 1/2 dose and 3/4 dose range depending on my

day. I'm a total light weight when it comes to drugs and drinking.

Sue

Re: Puberty

> >

> > Is he still compliant with the new meds, or no?

> >

> > I'm amazed you haven't just packed his bags and sent him...anywhere.

>

> He totally refuses to take the risperidol (or however you spell the

wretched

> drug; I think I spell it differently every time). He also says he will

not

> take seroquel, another drug suggested by his psychologist. He SAYS he

will

> be more compliant about Buspar if risperidol can be avoided.

>

> Salli

>

>

>

>

[Guest guest]

Barb -

Yes...it was a joke...

Please chime in on Puberty!!! We all need to know, although some of

us would rather not think about it. LOL

Penny :-)

[Guest guest]

In a message dated 12/14/01 9:51:44 AM Pacific Standard Time, PENNY writes:

> Barb -

>

> Yes...it was a joke...

>

> Please chime in on Puberty!!! We all need to know, although some of

> us would rather not think about it. LOL

>

> Penny :-)

>

>

>

>

I reprinted that just for the record, Penny! LOL

Salli keeps saying stuff about lawyers, and I

want to make sure I am covered! <g>

BTW, is there another word for " Puberty " that

doesn't sound so icky? I hate that word!

Barb

[Guest guest]

Barb,

Are you talking about puberty or something else?? I seriously wanted

stories of what to expect.

Sue

Re: Puberty

> Hi, I would gladly jump in on this, but I thought

> someone asked that we not discuss it?

>

> I'm not sure now if that was a joke or not.

>

> Please clarify.

>

> Barb-who's already messed up enough

> threads in the last week from being too sensitive.

>

>

>

[Guest guest]

For days now, I hate to admit it - but I don't know what on earth you two are

talking about.

Was WHAT a joke?

And what was indeed a joke?

I am totally lost.

Grace

Re: Puberty

In a message dated 12/14/01 9:51:44 AM Pacific Standard Time, PENNY writes:

> Barb -

>

> Yes...it was a joke...

>

> Please chime in on Puberty!!! We all need to know, although some of

> us would rather not think about it. LOL

>

> Penny :-)

>

>

>

>

I reprinted that just for the record, Penny! LOL

Salli keeps saying stuff about lawyers, and I

want to make sure I am covered! <g>

BTW, is there another word for " Puberty " that

doesn't sound so icky? I hate that word!

Barb