Re: Our Daughter ...to Tara's family

[Guest guest]

Hi,

My daughter was diagnosed with Graves' Disease 18 months ago. She was 13 at

the time and we believe she had been dealing with Graves' for perhaps 1-2

years before she was actually diagnosed. Like a lot of parents, we didn't

recognize the things she was doing as being something of an illness, so we kept

working on behavior, diet, sleep, etc.

We also had the pressure of hormones kicking in just prior to her diagnosis,

making it more difficult to deal with things. It was so hard to tell what was

hormones and what was Graves' disease, as well as what was just a poor

attitude.

We found a good endocrinologist after seeing the city's top pediatric endos

who tried to cram RAI down our throats. Then we found this group and began

utilizing the extensive knowledge present here, as well as superb support.

You've come to the right place!

Has anyone mentioned diet? That has been a help in our case and I think most

of the people in this group have made some changes in their pursuit of

healing. Specifically, we eliminated sugar almost entirely for a while, and

even

now limit it. We read about iodine and were careful with salt. We omitted fish

for a long time and even now we're careful about what Amy eats in this

category. We did extensive supplementation, based on a plethora of blood work

done

at an alternative site.

We dialed schoolwork back to a minimum (we homeschool, making this possible)

and took out extra activities for some time. We had to help Amy, who is

something of an overachiever, realize that she doesn't need to do everything on

her

" list " every single day, but to take things easier. Helping her to rethink

things has been difficult, but rewarding.

Also, we would not allow our daughter to use Graves' as an excuse for bad

behavior. Yes, she would break down and cry over almost nothing at all and we

had to curb all activites for some time; she simply couldn't handle social

situations, and she is normally a very gregarious girl. But we did not allow

anger

to rule her, in spite of the fact that many people deal with Graves' rage.

With our daughter still growing mentally and emotionally, we wanted to prevent

the forming of a bad habit that would only make life harder for her. She is

thankful we have worked with her on this issue.

We've put as much responsibility for healing into Amy's hands as we feel she

can handle; i.e., making her accountable for her medication each day, exercise

(when she was feeling better), getting regular sleep, filling out her

doctor's wellness form, not overdoing in school or other activities, etc.

Pulling

her into the active work of helping herself has made a difference, all the while

stressing self control, since with Graves' it is so easy to feel completely

out of control.

I'm happy to report that Amy appears to be headed toward remission. We are

looking forward to reducing/eliminating her medication sometime in the months

ahead.

We got lab reports at every doctor's visit to try to educate ourselves, and

to post them on this site for help in figuring things out.

I'm afraid I've overloaded you, but hang in there, and keep asking questions

of this group, and especially of the other moms out there who have kids

dealing with this disease. Carol from New Zealand had a younger daughter with

Graves' and may chime in soon.

Amy's Pam

In a message dated 9/18/2003 10:51:37 PM Central Daylight Time,

neil_nako@... writes:

> We would like to find other

> parents who are going through the same thing that we are going

> through. Someone to talk to would help with all the

> pressures that we are feeling.

>