New Member

[Guest guest]

On Sun, 9 Dec 2007 10:34:05 -0800, you wrote:

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

>should exclude xxx results.

>

>Sent from my iPhone

Just add the word chromosome to the search and you'll loose all the

xxx sites.

[Guest guest]

On Sun, 09 Dec 2007 01:39:44 -0000, you wrote:

>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.

Sorry I obviously made false assumptions. I thought you were talking a

teen boy.

>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

Best of luck. Feel free to ask here. And check in. I think the

Klinefelter's groups will be your best resource though.

[Guest guest]

If he were my son I would be traveling to the experts like the Mayo

clinic if that is where they are, to have him treated. I would not

leave it in the hands of the first doctor in my town. I would ask the

first doctor where the best treatment for him was available and leave

town.

There are endocrinologists that are worth their fee who deal with

developmental problems of all types at all ages. There are not many

good ones so you have to get good advice from somewhere.

ernestnolan

>

> 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

>

[Guest guest]

Hi , I am on Enbrel, Arava and now Plaquenil also. The Enbrel

was scary at first but I am into my third month now and i feel like I

have a life again. I can play with my grandchildren without feeling

that all over fatigue. I hope it works well for you. Ally

[Guest guest]

Welcome, . It is very common for a med to begin to be less

effective over time. For some people, a drug might be effective for

many years but for others only a few weeks, months, or not at all.

It is very strange, but this is an autoimmune disease so that our

bodies have an over-active immune response. That means our bodies

eventually figure a way around the med. I hope you respond well and

quickly to the Enbrel - many here have had great success with it.

Some also take it together with the MTX. Recent studies confirm that

combining MTX with the newer biologicals gives better results than

either alone!

Like you, my feet give me the most trouble although every joint has

flared at one time or another. I am taking Humira injections, which

operate similarly to Enbrel. I started with twice a month, but I'm

currently taking them weekly. I will probably add MTX back to the

mix soon to see if that gives me some extra relief.

Some tips on the injections - let the med get to room temp before

administering, ice down the injection site for several minutes

beforehand, and take Benadryl before and after if you have a site

reaction of hives and/or itching. If you are using a regular needle

(instead of a self-injecting pen) push the plunger VERY slowly. This

will minimize the stinging.

best regards,

sherry z

[Guest guest]

Thanks Sherry. I am using the pen. I will try letting the med get to

room temp first. I am also staying on the MTX, along with the Enbrel.

I think that I am going to be glad that I happened across this

message board. I am finding out that no matter how good your

Rheumatologist is, you sometimes get the most info from the people

that are actually going through this.

Thanks,

[Guest guest]

, yes, this will be the best source of info about PA besides your

Dr. The best thing is that this a group of people who know exactly

what you're going through, who can relate to every ache, pain,

frustration, fear, and emotion you have. We have truly walked in your

shoes, just as you have walked in ours. This is the best place you

will ever have to " vent " and to find a sympathetic ear.

best regards,

sherry z

>

> Thanks Sherry. I am using the pen. I will try letting the med get to

> room temp first. I am also staying on the MTX, along with the Enbrel.

> I think that I am going to be glad that I happened across this

> message board. I am finding out that no matter how good your

> Rheumatologist is, you sometimes get the most info from the people

> that are actually going through this.

>

> Thanks,

>

>

[Guest guest]

Hi Patti

Welcome, you have come to the right place :-)

He needs to be diagnosed by a Phyciatatrist...argh I know that's not spelled right .

hugs

Wags! Wags! Wags!

Lowry

"There is no psychiatrist in the world like a puppy licking your face."

Author Ben

From: homemom2191993@...Date: Sun, 23 Dec 2007 16:43:36 +0000Subject: ( ) New Member

Hi All, My name is Patti. I live in nothern lower MI with my husband , and 2 children Tony 14 and Gracie 3. We just found out 2 weeks ago our son may have Aspergers. This was quite a shock to us but also, after I looked it up, an answerto a lot of questions. Tony was a premie in the NICU 12 days on a vent for 4. He was also emergency C-Section as he was cutting off his oxygen supply with every contraction. When he was little he never spoke much and when he did it was very hard to understand. He had 12 ear infections before he was 1 and aother 12 before he was 2 so he learned language like he was under water. He was in speech and occupational therapy for preschool and has been in and out of speech since, and he still has a hard time with the "R" sound. He has horrible hand writting and has a hard time with keeping his shoes tied. He has been homeschooled on and off and has went to school some. This is his first time back to school in 1 1/2 and he is having major trouble with social skills. He cannot read body language at all and he will try to change the subject if the subject is not of his liking. He gets along better with adults than children his own age. He is fixated on anything Star Wars or Star Trek and is fixated on inventing Warp Drive when he grows up. Since we just found this may be what he has and it was only 1 1/2 weeks till Christmas break they are not starting any testing till they go back to school. Is there anything I should be asking for in the testing? Are there any specific type of Dr.s I sould be looking for or anything else I should have him tested for? Also are there any websites that you would recommend me go to?Thank you for letting me join your group and also for any reccomendations you give me. I am really new to this but I do know a little as I have an early childhood background. Thanks, Patti Books, DVD's, gadgets, music and more. Shop online with Sympatico / MSN Shopping today!

[Guest guest]

WELCOME TO THE GROUP PATTI!! I hope you can see these smilies too... LOL I have a hubby who is into Star Trek LOL My son is into Pokemon right now.

-- ( ) New Member

Hi All, My name is Patti. I live in nothern lower MI with my husband , and 2 children Tony 14 and Gracie 3. We just found out 2 weeks ago our son may have Aspergers. This was quite a shock to us but also, after I looked it up, an answerto a lot of questions. Tony was a premie in the NICU 12 days on a vent for 4. He was also emergency C-Section as he was cutting off his oxygen supply with every contraction. When he was little he never spoke much and when he did it was very hard to understand. He had 12 ear infections before he was 1 and aother 12 before he was 2 so he learned language like he was under water. He was in speech and occupational therapy for preschool and has been in and out of speech since, and he still has a hard time with the "R" sound. He has horrible hand writting and has a hard time with keeping his shoes tied. He has been homeschooled on and off and has went to school some. This is his first time back to school in 1 1/2 and he is having major trouble with social skills. He cannot read body language at all and he will try to change the subject if the subject is not of his liking. He gets along better with adults than children his own age. He is fixated on anything Star Wars or Star Trek and is fixated on inventing Warp Drive when he grows up. Since we just found this may be what he has and it was only 1 1/2 weeks till Christmas break they are not starting any testing till they go back to school. Is there anything I should be asking for in the testing? Are there any specific type of Dr.s I sould be looking for or anything else I should have him tested for? Also are there any websites that you would recommend me go to?Thank you for letting me join your group and also for any reccomendations you give me. I am really new to this but I do know a little as I have an early childhood background. Thanks, Patti

[Guest guest]

yes

( ) new member

Hi,

I am new to the group. I have a 15 year old son with AS and he was officially diagnosed 2 years ago. He went to public school for Kindergarten and 1st grade and then we began home schooling for 2nd to 5th grades. He went back to public school for 6th grade due to family health problems and the whole school year was a nightmare. Our son became so depressed and miserable that year so he returned to home school the very next year. He says he hopes he never has to go back to public school again.

Patti, did you ever live in Portland,Texas? I have to ask because I knew a lady about 17 years ago named Patti Journey and she moved away.

Hope

Start the year off right. Easy ways to stay in shape in the new year.

Never miss a thing. Make your homepage.

[Guest guest]

Hello Hope & welcome here. I also have a 15 yr old. He is my grandson who we have had custody of since he was 5. He was dx'd with Asperger/Bipolar/OCD/Chronic Motor Tic Disorder. He goes to a private school & has 8 kids per classroom. He has been there for the last 7 years. It is geared for those that need emotional support.Take care,Betty jade2674@... wrote: Hi, I am new to the group. I have a 15 year old son with AS and he was officially diagnosed 2 years ago. He went to public school for Kindergarten and 1st grade and then we began home schooling for 2nd to 5th grades. He went back to public school for 6th grade due to family health problems and the whole school year was a nightmare. Our son became so depressed and miserable that year so he returned to home school the very next year. He says he hopes he never has to go back to public school again. Patti, did you ever live in Portland,Texas? I have to ask because I knew a lady about 17 years ago named Patti Journey and she moved away. Hope Start the year off right. Easy ways to stay in shape in the new year.

Never miss a thing. Make your homepage.

[Guest guest]

Hope, welcome to the group, I'd love to hear from you, email me any time through my email address if you like. Patti

Re: ( ) new member

Hello Hope & welcome here. I also have a 15 yr old. He is my grandson who we have had custody of since he was 5. He was dx'd with Asperger/Bipolar/ OCD/Chronic Motor Tic Disorder. He goes to a private school & has 8 kids per classroom. He has been there for the last 7 years. It is geared for those that need emotional support.Take care,Betty

jade2674aol (DOT) com wrote:

Hi,

I am new to the group. I have a 15 year old son with AS and he was officially diagnosed 2 years ago. He went to public school for Kindergarten and 1st grade and then we began home schooling for 2nd to 5th grades. He went back to public school for 6th grade due to family health problems and the whole school year was a nightmare. Our son became so depressed and miserable that year so he returned to home school the very next year. He says he hopes he never has to go back to public school again.

Patti, did you ever live in Portland,Texas? I have to ask because I knew a lady about 17 years ago named Patti Journey and she moved away.

Hope

Start the year off right. Easy ways to stay in shape in the new year.

Never miss a thing. Make your homepage.

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[Guest guest]

I'm not really sure what your question is...can you please elaborate?

lisa

>

> hello everyone my sonw as born 2003 with torticollis and

> plagiocephaly.. had pt plus wore helmet..his head is still dented

> torticollis is much better he was born 8lb 13oz..vaginally.

>

> is anyone using their doc etc id love to hear from others in same

> predicument

>

[Guest guest]

If you want your son banded, then I would tell your pediatrician

that. You are the parent! CT bands to 18 months but the sooner you

can get in a band the better since he is already 10 months

old. Good luck getting the prescription.

PS: I specifically asked my ped. about the hair covering the

plagio. His response was that while it may cover it we need to make

sure my son's head is growing in the right direction. My son had

8mm when he began his DOC band journey. Also, for a boy

(especially) if they want short hair you may want the plagio

corrected. I don't cut my son's hair as short as I'd like because I

can still see the existing plagio (3mm). Also, if you'll have

regrets later, then I would definitely band now! A lot of

neurosurgeons aren't pro-banding so with that said, what did CT

say? What were your son's measurements? If you want opinions of

mom's here, you can post pictures.

> >

> > Hello. My son is 10 months old. He has

plagiocephaly.

> I

> > noticed his left side of his head being flat at 2 months. My

ped.

> said

> > his head would basically reshape itself in the next month. At 4

> months

> > this did not happen. I got a second opinion in the same ped.

> office.

> > This ped. referred us to a neurologist. The neurologist

> determined

> > ' condition as mild plagiocephaly and a helmet or band

> would

> > not be necessary. I still feel at this time that my son's head

is

> > still flat and his face is mishaped by this. I went ahead and

met

> with

> > Cranial Tech. to have him fitted. I spoke to the ped. for a

> > prescription who again tried to steer me away from banding. I

am

> so

> > confused as to what to do for my son. I feel the time is NOW to

> get

> > something done. My husband doesn't feel that it will be

noticable

> once

> > my son grows up and has hair.

> >

>

[Guest guest]

Hi there. We live in Port Orchard and have had to travel to Seattle

several times to see Darcy King at Seattles Childerens Hospital. She

is in the craniofacial dept. and evaluated our 8 month old son

Jaxson. She referred us to see Carlson at the Orthodics

building at Swedish Medical. Jaxson has been in his helmet now for 11

days and I think he is finally adjusted to it. You need to have your

Ped. reffer you to see these specialists. Anyway, that's who we saw.

Good luck!

Wheeler

>

>

> Is there any members here from the Pacific Northwest? If so, please

> make recommendations for specialist and clinics that make

bands/helment

> for my 6 month old DS with plagio.

>

>

>

> TIA

>

[Guest guest]

Is it clarren helmet? that is what I've heard the most about in

Seattle. Let us know how Jaxson's head progresses.

-christine

sydney 2 yrs starband grad

> >

> >

> > Is there any members here from the Pacific Northwest? If so, please

> > make recommendations for specialist and clinics that make

> bands/helment

> > for my 6 month old DS with plagio.

> >

> >

> >

> > TIA

> >

>

[Guest guest]

Welcome Tia!

Look thru old messages and the database for info on your area - you may find something!

:-)

Jen and Luli - 24 months

Left tort - Right Plagio - Hanger Band Grad - CA

http://www.babiesonline.com/babies/j/jens5th/

New Member

Is there any members here from the Pacific Northwest? If so, please make recommendations for specialist and clinics that make bands/helment for my 6 month old DS with plagio.

TIA

More new features than ever. Check out the new AOL Mail!

[Guest guest]

- Welcome! This is a great group of supportive parents who can answer alot of your questions.

Most babies adjust very well to the band - my dd was fussy sometimes in the middle of the night - but I brought her into bed with us and it helped.

Did the ped REALLY not recommened the band because of the cost??? I've not heard of that one before! :-O

Feel free to post pics of your babies!!!!

Jen and Luli - 24 months

Left tort - Right Plagio - Hanger Band Grad - CA

http://www.babiesonline.com/babies/j/jens5th/

New member

Hi all! We are new members and we are looking for some support! My

twins are 8 months. My son Dante has severe plagiocephaly due to

congenital tortocolis. My daughter has brachiocephaly (wide head,

prominent forehead). My pedi did not reccommend the helmets due to

cost. But my husband and I are not concerned about money. The twins

have been scanned and are due to get their helmets on 2/5. I just want

to cry when I think about how they will feel or react to the helmet.

Also, I would like any info on insurance claims. I have blue sheild ppo

from my work, so any help or suggestions would help! Thanks, and I hope

to hear from some of you.

More new features than ever. Check out the new AOL Mail!

[Guest guest]

I am sure your twins will do just fine! Most babies adjust rather

well. My son was the same happy baby the entire time banded and

slept through the night (night 3 forward). Good luck.

>

> Hi all! We are new members and we are looking for some support! My

> twins are 8 months. My son Dante has severe plagiocephaly due to

> congenital tortocolis. My daughter has brachiocephaly (wide head,

> prominent forehead). My pedi did not reccommend the helmets due to

> cost. But my husband and I are not concerned about money. The

twins

> have been scanned and are due to get their helmets on 2/5. I just

want

> to cry when I think about how they will feel or react to the

helmet.

> Also, I would like any info on insurance claims. I have blue

sheild ppo

> from my work, so any help or suggestions would help! Thanks, and I

hope

> to hear from some of you.

>

>

>

[Guest guest]

Can you post pictures? It sounds to me like maybe she has

plagiocephally???

>

> Hi,

>

> I've just found this group. I have 12 week old twins, and my

daughter

> Simone was diagnosed last week with torticollis. We had noticed

> pronounced bumps on either side of her head (toward the rear), and

then

> also noticed that the front left (her left) slopes a bit, and that

she

> prefers to turn her head right. So far, we've been told to do

exercises

> with her -- specifically, tilt her head toward her shoulder for 10

> seconds several times a day, and also turn her head to the left

for 10

> seconds several day, and to do lots of tummy time. She can and

does

> turn her head to the left on her own. The tilt is harder. And

tummy

> time is not her forte (yet). (Her twin brother is amazing with

tummy

> time -- he can hoist himself up and keep his head and shoulders up

for

> many minutes.) Oh, and the specialist who evaluated her said her

ears

> are almost symmetrical, but that the right side of her upper face

is

> protruding more than the left.

>

> Does this sound like what others see in their torticollis babies?

Does

> this sound like she may need a helmet? If so, how early can one

start

> with one? I will be taking her to PT this week, and probably

every

> week, but I'd appreciate input -- and suggestions for questions to

ask

> there. I really hope her face straightens out and that she gains

full

> muscle strength. How long before you typically see real

improvement?

>

> Many thanks!

> Toni

>

[Guest guest]

It does sound like she has plagiocephaly. What banding place is in your area? (DOC band, Starband, Hanger band..) My nephew got his DOC band not long after he was a month old. He had severe brachy.(he didn't have a soft spot and his head was very flat in the back) If you are concerned you can always try to get an evaluation done at which every banding place is closest to you. Good luck and keep us posted.

Lorie

Mom to Spencer & Alizabeth 9 months

Spencer-DOC band Grad for left side plagiocephaly

Re: new member

Can you post pictures? It sounds to me like maybe she has plagiocephally??? >> Hi,> > I've just found this group. I have 12 week old twins, and my daughter > Simone was diagnosed last week with torticollis. We had noticed > pronounced bumps on either side of her head (toward the rear), and then > also noticed that the front left (her left) slopes a bit, and that she > prefers to turn her head right. So far, we've been told to do exercises > with her -- specifically, tilt her head toward her shoulder for 10 > seconds several times a day, and also turn her head to the left for 10 > seconds several day, and to do lots of tummy time. She can and does > turn her head to the left on her own. The tilt is harder. And tummy > time is not her forte (yet). (Her twin brother is amazing with tummy > time -- he can hoist himself up and keep his head and shoulders up for > many minutes.) Oh, and the specialist who evaluated her said her ears > are almost symmetrical, but that the right side of her upper face is > protruding more than the left.> > Does this sound like what others see in their torticollis babies? Does > this sound like she may need a helmet? If so, how early can one start > with one? I will be taking her to PT this week, and probably every > week, but I'd appreciate input -- and suggestions for questions to ask > there. I really hope her face straightens out and that she gains full > muscle strength. How long before you typically see real improvement?> > Many thanks!> Toni>

[Guest guest]

I understand why you feel upset and worried, but time goes really

fast and at graduation day you will be happy you put your baby in his/her

band. I have9-month old twins and they will be done with the treatment

next Tuesday. You should see how beautiful and round their little heads

are.

The first day I felt like you and I was surprised to see them take

a nap in their carseats with their helmet on the very first afternoon.

They adapt really fast and rest assured that you are doing the best thing for

them.

Good luck and give you baby lots of kisses through the opening on

the top of the helmet, they love it.

From: hoopridge

[mailto:hoopridge@...]

Sent: Friday, February 08, 2008 2:46 PM

Plagiocephaly

Subject: New member

My 10-month-old preemie (32 weeker) was just

diagnosed and fitted for a helmet today. I

am really upset and worried. I guess I need some support...

[Guest guest]

>

> My 10-month-old preemie (32 weeker) was just diagnosed and fitted for a helmet

today. I

> am really upset and worried. I guess I need some support...

>

My 10-month old preemie (34 weeks) is going in on Monday to get her helmet so

I'm in the

same situation. My dr. kept telling me it would improve but her head remained

flat in the

back regardless of the repositioning we tried. I just keep tellling myself she

will appreciate it

when she's older...

Good luck!

[Guest guest]

I'm late seeing your message. Anyway, I'm in the Seattle area. My

daughter was evaluated at Children's Hospital by Darcy King. We chose

to work with Hangar Orthotics for correction. The orthotist is

Weber.

[Guest guest]

Hi maddestuff,Welcome to the group!Copaxone is the only CRAB drug considered compatible with LDN.This site will tell you how to obtain LDN:http://tinyurl.com/2dfbvdFor information about LDN and other helpful advice about treating MS, visithttp://tinyurl.com/grpm9With best wishes,Dudley Delany

dudley_delanyFrom: maddestuff

Sent: Wednesday, February 13, 2008 12:48 PM

low dose naltrexone

Subject: [low dose naltrexone] New member

Greetings:

I am a new member considering LDN for treatment of MS. I was

referred to this site by a friend. I recently was taking Betaseron

but tested positive for neutralizing anti-bodies so now I cannot

take any interferon.

I am fully functional at this point and can run, I am employed, etc.

but feel like I am very very slowly declining in neurological

function. I have new symptoms pop in and out every three months or

so. I can feel slight weakness starting to set in.

For my treatment I was considering Copaxone and LDN. First question

are these two comparable? Second, my doctor is a big shot as far as

MS goes and he dismisses any alternative therapies. I have my

appointment tomorrow morning and I am pretty certain he will say no

to LDN. Does this group have a listing of friendly doctors in

Chicago that would prescribe LDN? Or are there any other ways to get

a hold of this drug? Also, what is the cost?

Thank you so much for any information you might be able to provide.