Our Daughter and her story of Graves Disease

[Guest guest]

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 to would help with all the

pressures that we are feeling.