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I too had childhood migraines--and they also mention

spontaneous aborts (had one) and intermittent claudication (still get occasionally but almost gone)

I sent for a booklet that the site offered and found out a little

more--it seems that something makes the blood thicken even

more--they think it's an infection that sets it off. This makes sense

for me as it when soon after the infection that I had the strokes.

I also gather than antibodies are not always present--while the

two tests mentioned will usually catch the condition when it's stirred

up or more thickened, I think the INR (internationally normalised ratio) can be used to measure the thickness of the blood under regular

circumstances.

Along with the Bayer baby aspirin, I drink 64 ozs water daily--it took

a while to get to that amount, but once there, it's easy. That Penta

will get into the bloodstream even quicker. In a few weeks, I'm going to

try dropping the aspirin and see what happens.

You are getting a whole new life, e--once you get past creating the new habit of pill-taking, bet you won't recognize

how good you feel. The antioxidants are very important. My

conventional doc dropped his voice real low when he told me

he takes them daily.

Bonnie

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  • 6 months later...

in LA writes:

> For more information or listings for docs who treat this way now,

> check out <A HREF= " www.wilsonssyndrome.com " >www.wilsonssyndrome.com</A>.

Look under the patient area for the

> doc

> referrals. Even if you don't have 's Syndrome, their doctors are

more

>

> skilled in treating people, not numbers. You might find someone kind an

> caring and knowlegable right near you!

Thank you so much ! Its a great web site and prompted me to start the

temperature check at home (so far it's low). I found a provider on that web

site who is only about 1 1/2 hours from me so I'll contact her. She is listed

as an ARNP, not sure what that means.

I called my doctor yesterday and asked for more info on my lasts tests. I've

only had TSH tests, so I had full thyroid testing and antibody testing

yesterday. In light of my son's diagnosis, our pediatrician will test my

daughter as she is slow in developing also.

Are there others on this list who have children with hypothyroidism? Must

admit I'm struggling with a great deal of guilt and sadness that I've given

it to my children. I feel I trusted the wrong doctors and wish I'd been more

aggressive about my suspicions during pregnancies.

Jenelle

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In a message dated 2/18/2003 9:38:41 AM Pacific Standard Time,

jcalla5152@... writes:

> Must

> admit I'm struggling with a great deal of guilt and sadness that I've given

>

> it to my children. I feel I trusted the wrong doctors and wish I'd been

> more

> aggressive about my suspicions during pregnancies.

>

Dear Jenelle,

I recognize those feelings, too. Forturnately, WTS is reversible in many

people. So, with prompt treatment, your kids could start to do well, if the

diagnosis applies to them. And you could do well, too! Sounds like the

person you found on the WTS list is a Nurse Practitioner. They usually work

under the supervision of an MD and can write for medicines under the doc's

signature. This could be a very good thing!

Good luck,

in LA

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Jenelle,

do you know how often children should be tested. My baby is 4 months old.

You sparked my curiosity - It's definitely something I should be thinking

about.

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writes:

" do you know how often children should be tested. My baby is 4 months old. "

Sorry, I don't know.

Fortunately, by law babies in the US must be screened at birth to diagnose

congenital hypothyroidism. Babies with secondary hypothyroidism and those

with a normal TSH and low T4 won't be identified so you should look for

symptoms. According to the book " Living Well with Hypothyroidism, " in

infants, symptoms could include puffy face, swollen tongue, hoarse cry, thick

coarse hair that grows low on the forehead, prolonged jaundice, herniated

belly button, lethargy, sleeping most of the time, appearing tired when

awake, persistent constipation, and little growth.

My son didn't have those symptoms and really didn't start having symptoms

until he was about 6 or 7. He started having persistent constipation, snored,

had a host of unidentified allergies, complained of muscle aches, was

diagnosed with ADD, gained a lot of weight, height growth slowed down

considerably, etc. I thought what he went through was normal because I had

similar symptoms as a child. In hindsight, I see it, but when you are hit

with each one slowly and individually, its hard to see the big picture.

Jenelle

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In a message dated 2/19/03 10:28:41 AM Eastern Standard Time, JCalla5152

writes:

> Fortunately, by law babies in the US must be screened at birth to diagnose

> congenital hypothyroidism.

Ooops, meant a few days after birth babies are screened.

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  • 1 year later...

Syndrome is genetic. Based on what you have written here, I suspect

that the little boy has a deletion or microdeletion on his #7 chromosome,

specifically at 7q11.2

This condition is what is known as a contiguous gene syndrome in that several

genes are involved that all reside in the same area on the same chromosome.

Different degrees on disruption of this area lead to the variability seen in the

disorder.

--Lissy

[ ] Syndrome

Does Syndrome have any connection with mercury poisoning?

There is a sweet little boy with this condition in my son's

kindergarten/learning support classes. His mother says that

Syndrome is somewhat related to Down Syndrome and that he is missing

part of a chromosome (#7?). From reading about the condition, he

does have the accompanying facial traits. If anyone know if there is

a mercury relationship with Syndrome, I just want to be able

to pass on the information to the mother. Thanks!

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

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> Does Syndrome have any connection with mercury poisoning?

I don't know, but I do know that dietary and other interventions work

for Down Syndrome kids, so it is possible that certain similar things

work for Syndrome kids.

Dana

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