Re: Our Daughter and her story of Graves Disease

September 19, 2003

I have nothing to add to Alice's reply (only one I've seen so far). I

hope you can find the specialists you need because you need someone

really good not only converstant in pediatric thyroid but growth issues -

that sounds like a crucial route to pursue. You may want to ask the dr.

about psychiatrists familiar with the psychiatric problems that can come

with Graves beyond the anxiety and anger that many of us have

experienced. This would come under the category of Graves psychosis.

Don't let the words scare you - they're just diagnoses that will give you

the direction you need to get your daughter healthy.

There are several mothers of teens with Graves on this group who will

have practical and morale-boosting advice. Raising kids under the

smoothest of circumstances is a challenge. You must be constantly

discovering strengths you never knew you had.

Take care, Fay

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September 19, 2003

Hello and welcome!

I'm the mother of a teen with GD, diagnosed in spring of 2003, and

understand your fear and your feeling that there is no one to talk to

about this, as it is rare in children. The only person I know with GD

is a woman my own age. Like you, we are constantly trying to decifer

whether some of her symptoms are caused by GD or by teen hormones. In

our better moments, we relax and just let this quandary be -- trying

to second guess drives all of us crazy. No need for that! This support

group will provide you with a lot of valuable information. Elaine

's book " Graves' Disease, a Practical guide " is an excellent

source. As someone else mentioned, it's important to find a good

pediatric endocrinologist. My daughter sees a regular endo, as she's

almost 18. A therapist familiar with thyroid issues could also be very

helpful.

As you describe, we spent a few frantic years trying to figure out

what was wrong. Assumed at first that she was just having an extra

rough adolescence.

Lillie is 17 years old. She and her father and I all feel fairly

certain that she had had GD for a few years, undiagnosed -- probably

at least 4 years. She is extremely intelligent but began doing poorly

in school-- socially and academically -- in 7th grade (after having

been a straight A student in elementary school). There seemed to be no

explanation other than adolescent rebellion. The school problems kept

getting worse until this past January when in desperation, we had her

diagnosed with ADD. She seemed to fit a certain syndrome -- adolescent

girls with ADD who had no apparent hyperactivity. Now we suspect that

it has been the GD all along that has been the cause of her

difficulties, and that she never had " ADD " .

She has had a very bumpy adolescence thus far -- during a period of

depression when she was about 13, she went through a time when she was

cutting herself. This is extremely painful to recount, and the first

time I've shared it with the group here. There was no apparent

explanation. Our family and community life is very loving and stable.

She saw a therapist during this time and was not deemed suicidal, but

it was the most frightening episode of our lives as parents. Looking

back, with the knowledge of what GD can do to a person's entire being,

we realize that she must have been so uncomfortable in her own skin.

We will never stop wishing that we'd somehow, magically, been able to

know about this sooner.

Her depression lifted, but was followed by a lot of erratic behavior.

She was sexually active for a year at the age of 14 (with one steady

boyfriend). She was on birth control pills at the time for a year and

a half. It's occured to us that this may have either triggered the GD

or exacerbated it.

Physically, the symptoms crept up on her until I finally made a mental

connection between protruding eyes and thyroid, and asked for a blood

test. She had a sudden weight gain at 15, and has remained a good 20

pounds overweight since then. She had multiple symptoms including

trembling (more like purring), palpitations, sweating, jittery legs,

smooth skin, swollen thyroid gland (goiter), flushed complexion, mood

swings, etc etc (and of course the trouble with focus and

concentration). She had slight but noticeable eye protrusion and

slight lid retraction -- " staring " .

Most of these symtoms have abated or disappeared with treatment.

She has seen a nutritionist and a cranial-sacral therapist - very

helpful.

She is doing very well at the moment, having been treated with

Methimazole for several months, though we expect we'll likely see more

ups and downs before acheiving true stability.

She failed out of high school, due to an inability to focus or

concentrate, and is now taking a year off. We're trying to keep her

lifestyle low-stress. She's taking the GED this fall, as well as art

and music lessons in town. She'll participate in the local youth

theater, and she has a part time job at the health food store

(discount flax oil!).

She intends to go do a year at the local community college next year

(2004), and would like to go to art school for college after that.

We're very hopeful that she's firmly on the road to recovery.

As Elaine reassures us, children with GD do very well with treatment,

as a rule. There is another mother here, Amy's Pam, who recently wrote

to tell us that her daughter Amy is very close to remission after 2

1/2 years of treatment.

My heart goes out to you and your daughter, and I wish her a smooth

recovery.

********

> Tara's Story

> My husband and I have spent a long time looking for a support group

> for our daughters' Graves disease. It is so rare for her age (10

> when diagnosed). She was finally diagnosed in 2001 with graves

> disease, after a 2 year battle with the medical system to find out

> what was wrong with her. We had found out that Graves hits about 1

> percent of the population and only one quarter of that 1 percent is

> children. This helped explain why Her heart and mind was racing all

> the time. She fell into living in a fantasy world and even started

> to hallucinate. Her hand writing and printing went down the tubes.

> Preparation for bed or a shower etc. was too overwhelming. Her

> behavior and moods were unpredictable, to the point that we could

> not leave her alone for any length of time for fear of what might

> happen. We had to give her one instruction at a time. And to add to

> this her growth accelerated by two years, (3 complete wardrobes in a

> year). She was constantly hungry but could not keep weight on she

> became skin and bones. About 8 months later her thyroid started to

> settle down and actually started to go towards being Hypo. So as the

> thyroid settled down to normal she was taken off all medication.

> She started to gain weight and came back to the world of reality.

> She was doing very well for a year. Although we were still fighting

> the effects this had on her. She was treated very badly by

> the other children at school so her social skills took a real

> beating. She is socially about 2 to 3 years behind but academically

> at her age group. In November of 2002 she had to have surgery on

> her tendons in both legs because of her fast growth. She was always

> one to walk on her toes and she grew so fast that she could not put

> either heel on the floor. After 6 weeks of casts, she went through a

> few months of therapy. With all that said and done she was still

> doing very well and her future started to look very well until the

> end of august 2003. Just a few weeks ago we took her back to the

> doctor. She was talking to herself non stop and had become very

> restless. She started to eat constantly and had lost a lot of

> weight again. Sure enough the Graves disease has come back full

> force. She is once again on Heart/blood pressure medication as well

> as thyroid medication (Tapazole). She is now 12 years old. She is a

> little harder to handle this time though because with all this going

> on we also have regular 12 year old hormones raging as well. She is

> very unpredictable and explosive. We would like to find other

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

> through. Someone to talk t

September 19, 2003

> I have nothing to add to Alice's reply (only one I've seen so

far). I

> hope you can find the specialists you need because you need someone

> really good not only converstant in pediatric thyroid but growth

issues -

> that sounds like a crucial route to pursue. You may want to ask

the dr.

> about psychiatrists familiar with the psychiatric problems that

can come

> with Graves beyond the anxiety and anger that many of us have

> experienced. This would come under the category of Graves

psychosis.

> Don't let the words scare you - they're just diagnoses that will

give you

> the direction you need to get your daughter healthy.

>

> There are several mothers of teens with Graves on this group who

will

> have practical and morale-boosting advice. Raising kids under the

> smoothest of circumstances is a challenge. You must be constantly

> discovering strengths you never knew you had.

>

> Take care, Fay

>

We went the route of her seeing a phychiatrist the first time

around, ending up with having anti psycotics being prescribed..

tended to be like having a zombie around the house.. trying to find

a specialist that deals with graves in children is almost next to

impossible.. still looking for that doctor.. we have talked to a lot

of people in the medical profession and they are shocked that a

child has graves.. this is not a misdiagnosis, it has been confirmed

more than twice.. but it makes you wonder how many children have

been not been diagnosed correctly and been prenounced that they have

ADT some something else.. seems the system doesn't work unless you

really prod it into action.

September 20, 2003

Has your daughter tried any of the herbal remedies. Quite a number of people

here have tried out bugleweed tincture and although it is hard to know how

much it is responsible for helping - I myself really believe it has helped

me to gain remission as it works at the antibody level, rather than just

blocking iodine uptake by the thyroid gland, which is what ATDs do.

Good luck with it all.

DAWN ROSE

Reply-To: graves_support

To: graves_support

Subject: Re: Our Daughter and her story of Graves Disease

Date: Fri, 19 Sep 2003 22:41:17 -0000