Re: So Great! - Calling All Moms

[Guest guest]

They say she will have to go to the hospital

> with every sore throat. Is this true?

No. You've already been steered towards great info; I just wanted to

emphasize that sore throats are par for the course with Graves - your

daughter may well have a sore throat already. The worst annoyance is

likely to be that IF it persists she would need blood work, or depending

on the symptoms a strep test, etc. (And please let her know that several

hundred people appreciate how brave she is to have to undergo this on a

regular basis. When my son was 6 he had to have regular bloodwork. The

first time it took 3 nurses to hold him down but eventually, with

incentives on my part and good will on his it became a piece of cake.)

Don't feel pressured. You don't have limitless time because GD is

serious, but you have ample time to research.

It has only been very recently that RAI has been used on children. There

are no long term studies but based on the experiences of adults no parent

should entertain RAI for GD alone. Your best bet is anti thyroid drugs.

Though your doctors may seem unaware, there are established protocols.

One starts at the presumed to be highest dose necessary, then guided by

regular bloodwork and symptoms gradually reduces the drug until ideally

one can be weaned off it.

I would also look into block and replace therapy because of its success

with children. She may do well on anti thyroid drugs alone, though. I

went into remission after 14 months on Tapazole ending 2 years ago and

posted a message compiling some basic info on ATDs in late Feb. of this

year under the address cfyoung4@.... (Bear in mind that she would be

starting at a lower maximum dose due to age and size.)

Take care, Fay

P.S. I let this sit overnight and was debating sending this because by

now you surely have all the information you need. But one point that may

not have come up: Dealing with endocrinologists is enough to make one

doubt one's sanity. Seriously. At this time last year if anyone would

have told you that there exists a medical condition that 80% of the

specialists in that field will routinely push the worst, absolutely last

resort at best, treatment for as a first line of attack you would never

have believed it. Oh, and to compound this, that after administering this

worst treatment they may not do the necessary bloodwork or offer the

patients the best medication in the form of thyroid hormone replacement

they need.

Hang around here long enough and you'll get an idea of how many people

have RAI and even if they do OK afterwards (and I certainly hope they're

in the overwhelming majority), regret not having made the choice as an

informed decision.

We're all awaiting the expose on the situation with endoquackinology as

it stands now.

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