New Member

Posted September 20, 2007 · September 20, 2007

I assume your doctor did a number of blood tests before diagnosing you - if not,

he/she should have. X-rays are very helpful and are what were used to convince

my insurance company to cover Enbrel. Your doctor should be able to help you

with this - it takes some effort but most know how to deal with insurance

companies to get this drug covered. There is also a program thru the mfg (ask

your doctor, again) whereby the company will pay your co-pays for the first six

months and the second six months will pay all but $75/month. If your doctor

wants you on it and it's working (you will know within a month) he/she is the

one who will have to provide the insurance company with documentation that this

is the drug you need. (BC/BS turned me down twice but then the third " appeal "

goes to an outside, independent firm. It was they who said yes but only after

seeing my x-rays.) Good luck. I've been on it for just two months and it has

helped the

inflammation. It has done little, if anything. to help the pain from my

osteo-arthritis and right now, I'm having problems finding an NSAID I can take

so am still in some pain. You will need both.

I also just had my first set of blood work since going on the drug. The doctor

measured the sed rate again (down by half but still high) , did a CBC and a

metabolic panel (the last is to determine, I think, any kidney/liver problems.)

Your doctor should also likely have tested you before diagnosing you for the

genetic marker for PA, tested you for RA factor, and mine did a test that

determines how well my body is using Vitamin D. May have been others - it

seemed like a ton of them - but those are the ones that come to mind

immediately.

Joanna Hoelscher

630-833-7361

Posted September 20, 2007 · September 20, 2007

Elaine - congratulations on getting such a speedy diagnosis! The

sooner PA is diagnosed and treated, the better all around for you.

The mains drugs used to treat PA are NSAIDs (non-steroidal anti-

inflammatories) and DMARDs (disease-modifying anti-rheumatic drugs).

The first include naproxen, mobic, celebrex, and others. They treat

the accompanying inflammation, but don't actually treat the root

cause of PA which is an over-active immune system attacking your skin

and joints.

The second group includes methotrexate, Enbrel, Humira, Remicade, and

others. These can actually halt or slow the progression of the

disease by suppressing the immune system. Some of them differ in

exactly HOW they suppress it, but all are immuno-suppressants.

Many people are afraid to take these immuno-suppressants because of

the possibility of serious side-effects. Know, though, that the more

serious effects are very rare and that the less serious ones, such as

nausea, are easily handled for most people. Also be aware that

without these kinds of drugs you are at risk of suffering permanent,

debilitating damage to your bones and joints.

You should work with your doctor to find out which of the DMARDs will

be covered by your insurance. Most of the companies will not cover

the expensive drugs right away, but might do so as you demonstrate

that less expensive treatments don't work for you. Also, the drug

companies have some programs to assist with costs.

You are on your way to feeling better!

good luck,

sherry z

Posted September 20, 2007 · September 20, 2007

ELAINE, HI. I HAVE PA AND LUPUS. PA DIAGNOSED 10 YEARS AND LUPUS 7YRS. HAVE

YOU TRIED TAKING NSAIDS FOR THE PAIN AND INFLAMMATION? I TAKE SALSALATE--3X DAY.

I ALSO TAKE PLACQUINIL (HYDROXYCLOROQUINE) AND METHOTREXATE. I'VE HAVE SUCCESS

WITH THESE MEDS. I HAVEN'T USED ENBREL BUT OTHERS IN THE GROUP HAVE SO THEY CAN

TELL YOU ABOUT THAT MED. THERE ARE MED OPTIONS AVAILABLE. YOU DIDN'T SAY

SPECIFICALLY WHAT BLOODWORK YOU HAD DONE. YOU MAY OR MAY NOT HAVE ABNORMAL BW.

MY SED RATES ARE SOMETIMES ELEVATED BUT NOT ALWAYS. MY DR TREATS MY SYMPTOMS.

GOOD LUCK WITH YOUR NEXT APPOINTMENT. I HOPE YOU FEEL BETTER SOON. AND LET US

KNOW HOW YOU MAKE OUT. MARYLOU

Posted September 21, 2007 · September 21, 2007

Thanks so much for this information. I just came from the doctor who

said the bloodwork came back normal. He was surprised it didn't show

the inflammation. He gave me another " free " shot of Enbrel and is

having his office call my Rx company. He also suggested that he may

start me on the IV Remicade if I don't feel a little better next

week. I'm to go back to him next Friday, and we'll take it from

there.

Thanks for the support.

Elaine

Posted September 21, 2007 · September 21, 2007

Thanks so much for the information and support. I'm learning alot

here.

Elaine

>

> Elaine - congratulations on getting such a speedy diagnosis! The

> sooner PA is diagnosed and treated, the better all around for you.

>

Posted September 21, 2007 · September 21, 2007

Hi Louise,

I've been taking 2 Alleve in the morning and 2 at night for the last

several months. All bloodwork came back normal. Taking it one day at

a time. Thanks.

Elaine

Posted September 27, 2007 · September 27, 2007

Cheri,

I'm also a new member (joined today). We're in Walpole. We were at

Children's on Monday to see Dr. Mark Proctor and little Charlie was

scanned this morning for his helmet at Hanger in S. Easton. He has

moderate plagio.

We had a similar situation (although not twins)... perfect head at

birth and he just preferred the right side no matter what I did for

repositioning and tummy time. He spent so much time in the Bjorn,

too! My pedi, although I really like her, was not an advocate of the

helmet and kept saying that he could grow out of it, has seen worse,

etc.

We're feeling pretty good about our decision to move forward with the

process and am so relieved to have had a second opinion. The appt at

Children's was a 6-week wait but he'll just be 7 months next week so

I think we're at a good time (and hopefully this summer weather will

break eventually!).

Trying to find some other moms in the area that are in a similar

situation...

Best of luck at your appt,

>

> Hi, My name is Cheri. I have 3 month old boy/girl twins. I am a

> pediatric RN. I have always been aware of plagiocephly and often

> referred pt's to follow up with their MD if I saw the slightest

flat

> area. My friends and coworkers thought I was nuts! My twins were

born

> with perfect round heads and I took every precaution such as

> repositioning and tummy sleeping in the day time with supervision.

You

> can imagine my anxiety to discover a flat spot on my son Logan's

back

> right lower scalp. It progressively got worse. At their 2month

check

> up I asked for a referral for Boston Children's Hospital. My

> appointment is Oct 1st. I will attempt to post pictures, I'm not

so

> good on the computor. Does anyone live in the area south of Boston

or

> has anyone gone to Children's Hospital?

>

> Thanks Cheri

>

Posted September 30, 2007 · September 30, 2007

Hi -

Right now I am taking Advil & Aleve for pain, ice packs and heating pads. I

have also started taking the Glucosomine, flax seed and also starting to drink

Cherry Juice from concentrate. I do not want to take any more meds. I have had

psoriasis for 20 years and for the first five took just about everything on the

market. I prefer something more natural. Some people swear by the Cherry Juice

and Glucosomine. If this does not work, I will try the Methratrexate.

Posted September 30, 2007 · September 30, 2007

, I've been on Humira for less than a year. I started at every

other week and it helped for a couple of months, then it stopped being

so effective. Then we went to every 10 days. Again, it was great for

a couple of months but then the pain started increasing again. Now

I've been taking it every week through Sept. It was great for a couple

of weeks, then I started to hurt again. The rheumy wants me to start

using MTX again along with the weekly Humira shots. I'm resisting that

idea - my liver didn't like MTX and neither did my platelets.

Bottom line, ask them to try you on weekly Humira. Hopefully for you

it will do the trick for another year or more! (I've heard that some

people even take Humira twice a week.)

regards,

sherry z

>

> Hi my name is . I was diagnosed about 10 years now. I had to

> retire at 43 due to the pain in my joints. I have been an Humira now

> for about a year and half. I am now worried that is is not working

like

> it use to. I take it every 10 days now.

Posted October 1, 2007 · October 1, 2007

I don't know about the cherry juice, but the glucosamine will not help

PA. If you have any osteoarthritis, it will help with that but not

with PA or RA. The mechanisms of the disease processes are different.

The thing glucosamine helps with is not an issue in PA, thus no benefit.

best regards,

sherry z

Posted October 1, 2007 · October 1, 2007

Hi,

Was curious on the statistics of this: how many people have PA and how many have

RA?

Also I was just diagnosed and had for a long time.

Posted October 1, 2007 · October 1, 2007

Hi ,

Sounds like you are in a lot of pain. I understand. I have had two

surg's on my spine and am all to aware of the pain in the neck and

back. My Rhumey told me once that there was no joints in my back so

he couldn't help me with that problem. So I went to a pain

management doctor. Maybe you need to see a different type of doctor?

Hope that helps. They might want you to get an MRI to see if there

is damage to the disks. Good luck. And I hope you feel better..

Dori

-

-- In , " " <lehmanfarm@...>

wrote:

>

> Hi my name is . I was diagnosed about 10 years now. I had to

> retire at 43 due to the pain in my joints. I have been an Humira

> now for about a year and half. I am now worried that is is not working

> like it used

Posted October 3, 2007 · October 3, 2007

,

My little man who is almost five months hasn't been

hindered by his helmet as far as sitting or holding up

his head. He's not crawling yet but it's not time

either. The helmets really don't weigh much so my

little man doesn't even seem to notice it's there. I

think his is less than 6 ounces.

I breastfeed him. It doesn't seem to bother him,

either that or he's way more intersted in eating. I'm

sure you'll adapt. My kiddo has a DOC Band. The only

thing is that I think it digs into my arm while he's

eating. Sometimes I do take it off just to nurse.

However, our therapist didn't tell me that was ok.

Best of Luck

--- lka_236 <lka_236@...> wrote:

> Welcome! This is a great place to ask questions.

> Your banding

> experience should go well...we had a great

> experience with the DOC

> band. I know people have had good experiences with

> Hanger as well.

>

> The band should not hinder your son's development.

> I wondered the

> same thing but found that the band didn't hinder our

> son's

> development at all. He actually learned to do

> things during the

> time he had his band.

>

> I asked about breastfeeding and everyone said it was

> doable. I

> can't comment on breastfeeding while in the band

> because I ended up

> weaning my son prior to him getting the band for

> other reasons. I

> would definitely continue and hopefully other mom's

> can give some

> helpful tips on how to make it work with the band.

>

> Daycare...I'm not sure as I am a stay at home mom

> but I would think

> just making sure the daycare knows how to take the

> band on and off.

> Also, if they will have your son in their care at

> the beginning of

> the banding process that they know what to check

> for. I'd make a

> copy of the instruction sheet that Hanger gives you

> (at least I

> assume they'll give you an instruction sheet).

>

> Happy banding...have fun decorating the band.

>

> >

> > Hello all,

> > I joined the group last week and have enjoyed

> reading the very

> informative

> > posts and wanted to introduce ourselves. (I

> especially like the

> warning

> > about the dog--we have two dogs and I've already

> lost one retainer

> to them

> > so I KNOW they'd have an interest in the helmet!)

> >

> > Charlie just turned 7 months yesterday and we are

> getting our

> helmet next

> > Tuesday from Hanger in S. Easton, Mass. I started

> seeing a flat

> spot when he

> > was about 3-4 months old and we were assured by

> our pedi (who I do

> really

> > like) that it would start to go away on its own.

> We tried all

> sorts of

> > repositioning, tummy time, and kept him upright as

> much as

> possible. No

> > matter what we did, he always favored his right

> side. When he

> started

> > holding his head up more and sitting, I only saw a

> slight

> improvement. At

> > his 5-month appointment, I asked for a referral.

> So, off to

> Children's

> > Hospital we went. We saw Dr. Mark Procter (after a

> 6-week wait for

> an appt)

> > and he measured 12mm off which he said was

> moderate, but did

> recommend the

> > therapy.

> >

> > We were able to get an appointment within days at

> Hanger and I

> feel very

> > comfortable with our technician, . He did a

> laser scan last

> Thursday

> > and estimated that he'll need it for 2-3 months.

> After a couple of

> weeks of

> > feeling guilty (Did we do enough??, etc.), DH and

> I are prepared

> for this

> > change and see it as such a little blip in his

> life. All I can

> picture him

> > saying when he's 8 and trying on bike helmets is,

> " Ma, why didn't

> you fix my

> > head?? " ha!

> >

> > We were able to get preapproved with Tufts HMO and

> only have a

> $500 copay.

> >

> > I do have a couple of questions:

> > Sitting and crawling:

> > Has anyone noticed that the helmet delays your

> child's ability to

> sit up

> > and/or crawl? Charlie's very steady sitting and

> starting to show

> interest in

> > crawling (backwards at least!) and I'm worried

> that this may

> hinder his

> > efforts.

> >

> > Breastfeeding:

> > I'm still nursing a few times a day and not

> particularly ready to

> wean yet.

> > said that I could remove the helmet for

> nursing since

> they're such

> > short intervals anyway and really build on our

> bonding experience.

> My

> > problem is that except for our AM nursing session,

> he tends to

> fall asleep

> > and I don't think I can bear to wake him to put

> the helmet back

> on. Any

> > advice?

> >

> > Daycare:

> > He's in daycare 3x/week. Fortunately (I guess you

> could say!),

> they've had

> > one boy with a helmet so they are familiar with

> it. Any other

> advice I can

> > give to my child care provider?

> >

> > I'm sure I'll have quite a few more questions next

> week after we

> get helmet

> > on. I know that there is an adjustment period and

> he's really a

> very

> > easy-going little guy. We haven't told many people

> yet (not even

> our older

> > kids!) so that's something that I know I really

> have to get over

> (like I'm

> > going to be judged) and get over quick...

> >

> > Thanks,

> >

> > Walpole, Mass.

> >

>

________________________________________________________________________________\

____

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to amazing places on Travel.

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Posted October 3, 2007 · October 3, 2007

" " asked: Was curious on the statistics of this:

how many people have PA and how many have RA?

I have psoriatic arthritis, Sjogrens syndrome, MCTD,

and osteoarthritis. No RA (yet.)

Wanda

________________________________________________________________________________\

____

Check out the hottest 2008 models today at Autos.

http://autos./new_cars.html

Posted October 28, 2007 · October 28, 2007

Hello, Matt, and welcome! What's your story?

regards,

sherry z

>

> Just wanted to say a hello

>

Posted October 29, 2007 · October 29, 2007

Hello Judy,

Welcome!

Margaret is indeed active and may have recommended

LDN to you. If not, I will. I have lung metastases

and have been taking LDN and it has worked for me.

Safe, no side effects, can take with other medication

except narcotics, and low costs.

http://www.low dose naltrexone.org/

You may want to join LDN_cancer health group to

get all the benefits from the links section.

LDN_4_cancer/

LDN_4_cancer/links

or you an email me at anytime for your questions.

Dee

http://www.ldn4cancer.com/index.html

Posted October 29, 2007 · October 29, 2007

Dear Judy,

I'm working in vegetal extraction with my company called curador

www.curador.net. I'm involved in researches with potent compound for cancer and

there is one naphtoquinone called beta lapachone which is promising in lung

cancer and other cancers as it acts on restoration of checkpoints activation and

is non toxic to healthy cells :

http://seniorjournal.com/NEWS/Health/2007/7-06-26-Cancer-Killing.htm

I know that Boothman the specialist in beta lapachone 'll set clinical

trial for lung patients. It could be interesting to contact him.

On our side, we 'll sell an improved extract of pau d'arco with high certified

level of beta lapachone in the global extract of the tabebuia.

Hope it helps

Jean

From: Judy Olson

My sister was diagnosed with adrenal cancer (stage 1 or 2) and had surgery to

remove the cancer in May 2006. Her lungs were damaged during the surgery and, 2

days later, she developed ARDS and became gravely ill for several weeks. The

doctors said her recovery, once she came out of it, was miraculous. She

underwent radiation treatment shortly afterward and had been feeling fine (for

the most part)until lately. CT scans show spots on her lungs and liver (there

were always 2 on her lungs that they were monitoring,now there's 5 or 6 the size

of an eraser). I believe she has 2 spots on her liver, same size. She is

scheduled to go to Dana-Farber Nov 2 to see Dr. Oh. I am trying to

learn as much as I can about this disease and the best treatment

methods so that I can help her. Any suggestions?

Posted November 4, 2007 · November 4, 2007

Welcome, ! Isn't it weird how we seem to have found a whole

group of people who are almost living our same lives? Weird, but

good. I feel a very real connection to all of you and I think you

all understand this huge part of me even better than my family and

long-time friends because you've lived it.

Yes, the flare/remit cycle can be very disruptive. I spent 10 days

visiting my younger daughter and I was at a very good spot and could

do lots of things almost normally. This weekend, my older daughter

came to visit me for the weekend and half the time I was laid up with

a badly swollen and badly painful right foot. So frustrating! We

couldn't do half the things we planned to do.

best regards,

sherry z

Posted December 8, 2007 · December 8, 2007

I did a quick search and got nothing but XXX moives. Then I changed the

wording that did not make much since and found this from this link.

XX males are allway sterile.

http://www.altpenis.com/penis_news/more_to_a_man.shtml

=================================

In the vast majority of cases the if-you've-got-a-Y-you're-a-guy rule holds.

Even children with one or more extra X chromosomes (XXY and XXXY) are to all

intents and purposes male. In rare cases, during meiotic recombination between

the X and Y gene, the SRY gene can be translocated onto the X chromosome. When

this happens the child will genetically be a girl (XX), but thanks to the

presence of the SRY gene on the second X, will develop into a male complete with

one dick, two balls and a multitude of Alba posters on the walls. He may

never even know his genetic status until he and his wife try to figure out why

she can't get pregnant. XX males are always sterile.

ess7090 <tlaylon@...> wrote: Hello I'm a new member looking for

information. Our 30 year old son

was diagnosed with XXXY at the age of 16. Without going into a long

boring history suffice it to say he is developmental delayed. However

the geneticist was surprised at his testosterone level then as it was

low normal and couldn't really understand how it could be given his

situation other than it was being produced by another gland.

My question is = at the time the dr. said he wouldn't father children

as 99% of the time the sperm count is too low. It has never been

checked because there hadn't been a need. Now that he is dating etc

etc etc you can see where this is leading.

Is this theory correct? Do some XXXY's have capability of fathering

children? I realize that we can have his count checked however he

isn't comfortable with the idea at this point.

Any info would be appreciated - from a concerned mom...Teri

Co-Moderator " Don't believe anything you hear and only half of what you see. "

Phil

---------------------------------

Looking for last minute shopping deals? Find them fast with Search.

Posted December 8, 2007 · December 8, 2007

As a Kleinfelters mosaic 36 year old male, I have a low, but in the

lab normal Total Testosterone of 375 (Normal 300-1000) (Free of 13.8

(Normal 13.2-26). I've been told that it's possible to father children

but my wife and I have not tried. My sex drive has always been on the

low side and the highest my testosterone ever has been was 475 when I

was 25. For the last several yours I've been having some ED problems

and even with KS, doctor's don't want to do anything about it other

than Cialis and that's not doing much for me.

-cb

Hello I'm a new member looking

for information. Our 30 year old son

> was diagnosed with XXXY at the age of 16. Without going into a long

> boring history suffice it to say he is developmental delayed. However

> the geneticist was surprised at his testosterone level then as it was

> low normal and couldn't really understand how it could be given his

> situation other than it was being produced by another gland.

>

> My question is = at the time the dr. said he wouldn't father children

> as 99% of the time the sperm count is too low. It has never been

> checked because there hadn't been a need. Now that he is dating etc

> etc etc you can see where this is leading.

>

> Is this theory correct? Do some XXXY's have capability of fathering

> children? I realize that we can have his count checked however he

> isn't comfortable with the idea at this point.

>

> Any info would be appreciated - from a concerned mom...Teri

>

> Co-Moderator " Don't believe anything you hear and only half of what

you see. "

> Phil

>

> ---------------------------------

> Looking for last minute shopping deals? Find them fast with

Search.

>

Posted December 8, 2007 · December 8, 2007

On Sat, 08 Dec 2007 14:46:12 -0000, you wrote:

>Hello I'm a new member looking for information. Our 30 year old son

>was diagnosed with XXXY at the age of 16. Without going into a long

>boring history suffice it to say he is developmental delayed. However

>the geneticist was surprised at his testosterone level then as it was

>low normal and couldn't really understand how it could be given his

>situation other than it was being produced by another gland.

>

>My question is = at the time the dr. said he wouldn't father children

>as 99% of the time the sperm count is too low. It has never been

>checked because there hadn't been a need. Now that he is dating etc

>etc etc you can see where this is leading.

>

>Is this theory correct? Do some XXXY's have capability of fathering

>children? I realize that we can have his count checked however he

>isn't comfortable with the idea at this point.

>

>Any info would be appreciated - from a concerned mom...Teri

I can understand as a parent your concern about his being able to have

children. But at this point, I'd say forget that. Focus on getting him

the testosterone he needs, and focus on his physical development. What

is his testosterone level without treatment? Have they started him on

treatment? What type of treatment? Are they going to monitor his

estradiol also?

Many XXys and XXXYs don't develop fully without help. Issues of

fertility don't matter much to a guy with a penis the size of a 6 year

old, who's afraid to approach women for fear they'll need to

" perform " . Help him get the treatment he needs and to feel good about

himself. Don't add other issues to the problem, is my advice.

Also you may benefit by talking to klinefelter's parents (ordinarily

XXY). I suspect many of the issues are the same or this is a variant

of Klinefelters.

There are wonderful support groups for the boy/men and parents.

http://klinefeltersyndrome.org/

http://www.ksa-uk.co.uk/ A british page

Posted December 8, 2007 · December 8, 2007

You do know your Dr. is not doing you right have you any idea what happens to a

mans body with T levels this low. Is your Dr. an Endo I am betting he is. Just

go to www.allthingsmale.com and read the FAQ's there and TRT: A Recipe for

Success and see what is the lastest treatment for this. If my levels were as

low as yours are I would be in bad shape yes you do get use to feeling like this

but when you get tuned up and have higher levels of Testosterone and lower

levels of Estradiol you will not believe how good you feel.

You need to find a different Dr. one of the Anti ageing or a DO Dr. of

Osteopath. Go to the files section on the left side of the home screen and read

" Finding a male Hormone Doctor " start calling and ask a lot of questions before

see him.

American Academy of Osteopathy

Find an osteopath in US and some other countries

http://www.academyofosteopathy.org/findphys.cfm

Find an osteopath

http://www.osteopathic.org/index.cfm?PageID=findado_main

General Osteopathic Council

Find an osteopath in almost any country

http://www.osteopathy.org.uk/find_osteo/

Healthfinder

Find an osteopath near you in the US. Also links to site to explain what an

osteopath is.

http://www.healthfinder.gov/Scripts/SearchContext.asp?topic=3786

*I recommend avoiding osteopathic endos. They seem to be the same as regular

endos.

cbshackle <cbshackle@...> wrote:

As a Kleinfelters mosaic 36 year old male, I have a low, but in the

lab normal Total Testosterone of 375 (Normal 300-1000) (Free of 13.8

(Normal 13.2-26). I've been told that it's possible to father children

but my wife and I have not tried. My sex drive has always been on the

low side and the highest my testosterone ever has been was 475 when I

was 25. For the last several yours I've been having some ED problems

and even with KS, doctor's don't want to do anything about it other

than Cialis and that's not doing much for me.

-cb

Hello I'm a new member looking

for information. Our 30 year old son

> was diagnosed with XXXY at the age of 16. Without going into a long

> boring history suffice it to say he is developmental delayed. However

> the geneticist was surprised at his testosterone level then as it was

> low normal and couldn't really understand how it could be given his

> situation other than it was being produced by another gland.

>

> My question is = at the time the dr. said he wouldn't father children

> as 99% of the time the sperm count is too low. It has never been

> checked because there hadn't been a need. Now that he is dating etc

> etc etc you can see where this is leading.

>

> Is this theory correct? Do some XXXY's have capability of fathering

> children? I realize that we can have his count checked however he

> isn't comfortable with the idea at this point.

>

> Any info would be appreciated - from a concerned mom...Teri

>

> Co-Moderator " Don't believe anything you hear and only half of what

you see. "

> Phil

>

> ---------------------------------

> Looking for last minute shopping deals? Find them fast with

Search.

>

Posted December 8, 2007 · December 8, 2007

Thank you for your comments. He's had no treatment or testing since

he was first diagnosed because at that time his test was low

normal. His physical development is more than adequate

(surprisingly I guess) and he has always been very interested in

sexuality (almost too much so..but that's from a typical females

point of view :-)

At 30 he's been able to get a driver's license, hold a full time job

albeit a dishwasher but been there 8 years and extremely

dependable. His biggest problem is emotional immaturity. He just

started dating last year. Apparently he has normal activities with

her and is satisified in that regard.

My concern of whether he could father a child is complicated due to

his current situation. But I guess my answer will have to come from

a test at the dr's office. From what I've read 99% to 100% of the

time it is infertility as an issue but I'd hate like anything to

have said that and then him be the one that got through. (This

current situation would be a total disaster).

Thank you for your comments. I'll have to do more research. Teri

>

> I can understand as a parent your concern about his being able to

have

> children. But at this point, I'd say forget that. Focus on getting

him

> the testosterone he needs, and focus on his physical development.

What

> is his testosterone level without treatment? Have they started him

on

> treatment? What type of treatment? Are they going to monitor his

> estradiol also?

>

> Many XXys and XXXYs don't develop fully without help. Issues of

> fertility don't matter much to a guy with a penis the size of a 6

year

> old, who's afraid to approach women for fear they'll need to

> " perform " . Help him get the treatment he needs and to feel good

about

> himself. Don't add other issues to the problem, is my advice.

>

> Also you may benefit by talking to klinefelter's parents

(ordinarily

> XXY). I suspect many of the issues are the same or this is a

variant

> of Klinefelters.

> There are wonderful support groups for the boy/men and parents.

>

> http://klinefeltersyndrome.org/

> http://www.ksa-uk.co.uk/ A british page

>

Posted December 9, 2007 · December 9, 2007

A little google search tip: If you add -xxx to your search terms that

should exclude xxx results.

Sent from my iPhone

On Dec 8, 2007, at 7:17 AM, philip georgian <pmgamer18@...> wrote:

> I did a quick search and got nothing but XXX moives. Then I

> changed the wording that did not make much since and found this from

> this link.

> XX males are allway sterile.

> http://www.altpenis.com/penis_news/more_to_a_man.shtml

> =================================

> In the vast majority of cases the if-you've-got-a-Y-you're-a-guy

> rule holds. Even children with one or more extra X chromosomes (XXY

> and XXXY) are to all intents and purposes male. In rare cases,

> during meiotic recombination between the X and Y gene, the SRY gene

> can be translocated onto the X chromosome. When this happens the

> child will genetically be a girl (XX), but thanks to the presence of

> the SRY gene on the second X, will develop into a male complete with

> one dick, two balls and a multitude of Alba posters on the

> walls. He may never even know his genetic status until he and his

> wife try to figure out why she can't get pregnant. XX males are

> always sterile.

>

> ess7090 <tlaylon@...> wrote: Hello I'm a new member

> looking for information. Our 30 year old son

> was diagnosed with XXXY at the age of 16. Without going into a long

> boring history suffice it to say he is developmental delayed. However

> the geneticist was surprised at his testosterone level then as it was

> low normal and couldn't really understand how it could be given his

> situation other than it was being produced by another gland.

>

> My question is = at the time the dr. said he wouldn't father children

> as 99% of the time the sperm count is too low. It has never been

> checked because there hadn't been a need. Now that he is dating etc

> etc etc you can see where this is leading.

>

> Is this theory correct? Do some XXXY's have capability of fathering

> children? I realize that we can have his count checked however he

> isn't comfortable with the idea at this point.

>

> Any info would be appreciated - from a concerned mom...Teri

>

> Co-Moderator " Don't believe anything you hear and only half of what

> you see. "

> Phil

>

> ---------------------------------

> Looking for last minute shopping deals? Find them fast with

> Search.

>

Posted December 9, 2007 · December 9, 2007

Thanks I do a search on so many sites I can't remember what is for where.

Dave <groupsdude@...> wrote: A little google search tip: If you

add -xxx to your search terms that