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Re: Visit to Dr. Harbison ATTN KIM

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--- KIM

Our son also has a VERY small penis and it is not something

mentioned often, however it worries my husband sick. I was just

curious if she said anything else about it and if she was certain it

would grow with puberty? will it grow to an average size? Talk

about a surprise for these boys LOL

In RSS-Support , " Kacey171 " wrote:

> Hi everyone,

>

> We made the trip to New York to see Dr. Harbison on 12/11, and I

thought I'd share

> what our visit was like. First of all, I have to say it was worth

the trip. Even my

> skeptical husband thought so. We waited a long time, of course,

before we were

> called in to see her, but she spent about 2 hrs. & 15 minutes with

us.

>

> We learned some things that were quite interesting as well as some

things that local

> doctors missed years ago. is 10, and although I didn't

get a " formal

> diagnosis " of RSS until this past summer at the MAGIC convention,

I suspected he had

> RSS since he was about 4 years old. After attending the

convention, I couldn't believe

> the resemblance of all the babies & toddlers to when he

was younger.

>

> was delivered at 28 weeks gestation via c-section.

Doctors took him from

> me, because he was not growing, and thought he would do better

outside of me than

> inside. He was just 15 oz. at birth. He has had a g-tube his

whole life, and he

> remains small (currently 50.25 " & 48 lbs.). He has been on growth

hormone for

> almost 2.5 years & Lupron for almost 2 years.

>

> Though he has had an LH/RH test twice which doctors thought was

clearly pubertal.

> Dr. H looked at the results and called them peripubertal. I was

told by local doctors

> that the LH level only had to be twice the amount of the FSH level

to be considered

> pubertal. Dr. H. said in true puberty, the LH is actually 3 times

the FSH level. So, she

> still believes that has been in adrenarche for many

years. She is

> recommending some more baseline tests before starting him on an

aromatase

> inhibitor to stop the advancement of the bone age.

>

> I know most of you who are on this listserve are pretty

knowledgeable about

> adrenarche, but for those of you who aren't, I urge you to keep

close tabs on the

> following indicators: body odor, development of axillary and/or

pubic hair, acne, and

> an increase in bone age (especially when the bone age was delayed

previously). When

> I look back at 's records (he has had about 10 bone ages

done since 1/95),

> he started advancing right at the time all the other signs of

adrenarche appeared.

> Although wasn't diagnosed with RSS at this point, I feel

that his

> endocrinologist at that time should have seen the signs of

adrenarche, as this

> condition is not limited to RSS. However, she did not, and

proceeded to give him

> testosterone injections to increase the size of his penis. All

this did was advance the

> development of adrenarche, according to Dr. H. I saw a post

recently inquiring about

> what to do about a small penis. Dr. H is not concerned with

this. She doesn't feel

> that we should do anything about it, except wait for puberty to

actually occur. She

> said it would definitely grow when puberty happens.

>

> I also asked Dr. H if fertility would be an issue for my son later

in life, and she said

> probably. She said that it is in many RSS patients. I have never

seen this topic come

> up on the listserve, but I know there are several adults who post

occasionally. For

> those RSS adults (both male & female), I am curious if you have

children & if so, did

> you have trouble conceiving?

>

> Dr. H gave us insight on many aspects of RSS, but the last thing I

wanted to mention

> was something else I haven't heard before. My son has scoliosis &

kyphosis. He does

> not wear a brace, but in my opinion & in Dr. H's, it looks pretty

bad. He goes back to

> the orthopedic doctor tomorrow, so we'll see what happens.

has always had

> a compromised respiratory system due to being a preemie and being

on a ventilator

> and oxygen so long. He hasn't seen a pulmonologist in many years,

and we only give

> him nebulizer treatments when he is ill. He does cough daily,

especially in the

> morning, but doesn't wheeze on a regular basis. Dr. H thought

that the kyphosis/

> scoliosis could be restricting his thorax, so it doesn't expand,

causing him to cough &

> not be able to breathe as functionally as a normal person would.

She recommended

> he go back to a pulmonologist and said that this doctor should

work carefully with his

> orthopedic doctor. Again, I am mentioning this, because it is not

something I have

> seen in this listserve and may be beneficial to some of you.

>

> If anyone would like to e-mail me privately to ask questions about

our visit with Dr.

> H, I'd be happy to respond.

>

> Sincerely,

>

> Kim C. (mom to , 10 RSS, , 3, and baby-girl-to-be

due in February)

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