Re: Another mom to

[Guest guest]

Hey, ,

I just read your history of Lillie, and it is remarkably like my own

daughter's, Amy. She was younger, only 13, but went through practically

everything

you've described, and yes, she had Graves' long before we recognized it. We

also thought she was having a rough adolescence.

We also made the drop from 20 mg. to 10mg., but along the way also went hypO

for a while. The 5 mg. twice a day is better now for her.

We homeschool and had to pull back on quite a bit while Amy was so ill, and

even now we keep our schedule as stress free as possible. I applaud your

decision not to worry about continuing education with your daughter. She's p

robably learned all she needs to know at this point anyway. Interestingly, I

have a

17 year old daughter who loves music and art as well.

Yes, this thing is very scary and I'm amazed at how Amy has matured

throughout all of this in her young life. Now I have another daughter with an

autoimmune disease (Raynaud's with some indications recently of going into MCTD

or

perhaps Lupus) and this is much scarier for us. Like you, we found an excellent

endo, after difficulty and determination to keep looking, and we are now

looking forward to the possibility of remission at some point.

This group loves children, younger and older, and will do anything to help.

I'm glad you've joined in.

Amy's Pam

In a message dated 8/12/2003 1:22:28 PM Central Daylight Time, harcho@...

writes:

> Hello!

>

> My name is , and I'm the mother of Lillie, 17 yrs old, diagnosed

> with GD in late May 03. After Tosha's and Betsy's letters, and the

> responses, it seems like the time for me to jump in.

>

> I have corresponded with Elaine, as I was shy to join the group, being

> a mother and not the patient.

>

> First of all, to Tosha:

> My daughter has been doing very well on ATDs for 4 months, now, with

> no adverse effects. I've done a ton of research, and have come to the

> conclusion that ATD's are the only way to go. After the first month,

> the endo ordered a battery of tests for white and red blood cell

> counts, and all was well.

> The odds are in your daughter's favor, especially with you as her

> advocate. My heart goes out to you.

>

> I'd like to share with the group some of what I've sent to Elaine.

> I'll start with the labs, and follow with personal info.

>

> I've been reading your posts, and have learned so much, including the

> fact that it's good to follow your instincts and get lab-work done

> sooner rather than later sometimes.

> Recently Lillie's been a bit lethargic -- sleeping more than usual,

> unmotivated. So we went to get her labs done 2 weeks sooner than

> recommended. It was a good thing we did, as it's changed a good deal!

> Now we're in the tricky part, I guess, and so I'd like to share her

> lab and med history with all of you, and get your take.

>

>

> 5/5/03:

> TSI: 332 (<130)

> T4 free, direct: 5.53 (0.83 - 1.44)

> TSH: 0.051 (0.360 - 5.800)

> T3: 565 (91-164 - for girls 16-18 yrs. old)

> Thyroid uptake and scan: 82% (should be 25%)

>

> She began taking 30 mg of Methimazole on 5/8/03

>

> 6/10/03:

> T4 free, direct: 1.92 (0.83 - 1.44)

> TSH: 0.055 (0.360 - 5.800)

> T3: 247 (91-164)

> (her white and red blood cell counts were tested on this day and found

> to be normal)

>

> 7/7/03:

> T4 free, direct: 1.60 (0.83 - 1.44)

> TSH: 0.051 (0.360 - 5.800)

> T3: 191 (91-164)

>

> Dosage lowered to 20 mg of Methimazole on 7/18/03

>

> 8/8/03:

> T4 free, direct: .86 (0.83 - 1.44)

> TSH: 0.055 (0.360 - 5.800)

> T3: 113 (91-164)

>

> Her dosage was just lowered yesterday, 8/11/03, to 10 mg.

>

> Our concern of course, is the low T4.

> Is the new dosage of 10 mg correct under the circumstances, do you

> think?

> Is it OK to change so rapidly from 20 to 10 mg, or should she taper

> for a few days, at 15?

> How long before we see a change in the TSH?

> Is there any way to know what to expect next?

> Is there anything we should be on the lookout for?

> Her eyes are about the same - slight proptosis, a bit bloodshot.

> Goiter still present, but not really noticeable to untrained eye.

> Her pulse is much closer to normal, her heat intolerance and her

> trembling and palpitations have stopped.

> Emotionally, she's remarkably stable right now.

> Last question: Are there any mothers of teenagers with Graves out

> there??? And does anyone know of a support group for teens that my

> daughter might join?

>

> Here's the short version of her long, complicated story:

> I hardly know where to start. She feels, and we agree, that she'd

> probably had Graves for at least 3 years before being diagnosed.

> Around when she was 13 and 14, her behavior and appearance changed

> drastically. She went from being an extra-healthy, excellent student

> in grade school, to a spiral of disastrous emotional and

> school-related difficulties. Of course, we just thought she was having

> an extra-rough adolescence (not so uncommon), and it never occured to

> us that there might be a physiological explanation. There have been

> many ups and downs -- Suffice it to say that we've all been through

> the wringer for the past few years! It's a testament to her own

> intelligence, resiliance and strengths that she is doing so well right

> now. She is an amazing and beautiful young woman. Making the long

> story short -- currently, after failing 11th grade, she's decided to

> stop going to high school (i hate the term " drop out " ). It just seemed

> like too much for her under the circumstances. The sky did not fall

> in. She relaxed after making this hard decision -- a weight lifted

> (stress reduction!). We've come up with what we feel is a good program

> for her for the fall, including taking the GED (high school equilancy

> diploma), art classes, music lessons, and a job. (Art and music are

> her loves.) She might begin taking classes at the local community

> college in the spring, or next fall. She would like to go to art

> school when she gets better.

> She's basically doing pretty well, now, and is in pretty good spirits.

> We know we must be vigilant to keep her from going into

> hypO-thyroidism.

>

> I look forward to hearing from the group, and to sharing info and

> support. It's all still so scary, even if it is getting a bit more

> comprehensible.

> Thanks in advance,

>

> -

>

> By the way, I'd like to recommend Lillie's endocrinologist. She is a

> young woman, named Dr. Ayesha Cheema, in Kingston, NY (Hudson

> Valley/Catskill region).

> She's been very responsive and thorough, and has not pushed the RAI on

> us. In fact she recommends ATD's as the preferred treatment.

> Oh and Lillie's also been doing cranio-sacral therapy.