[npattersonModerator October 25, 2008 at 11:00 am Post count: 398]

#1075699

I am so sorry that you are having to deal with so much! If my arithemetic is right, your daughter is 12 by now. It sounds like you made good decisions, even though they have been tough ones. We have an excellent bulletin titled "Students and Graves’ Disease" If you will e-mail me, I can send it to you by mail or as an attachment. It was written by a Special Ed Teacher, and several pediactric endocrinologists. Parents have been known to make copies, and meet with the principal, school nurse, guidance counselor and all the child’s teachers! There is not a lot written about pediatric Graves’ other than about the treatment decisions.

Middle school is a tough time to go through, even without health problems. Please do all you can to educate her school, and then give her lots of love. The more she will talk to you, the better off both of you will be. We have a children’s coordinator who may be able to put you in touch with other parents.

Take care, and keep in touch. Nancy (nancyngdf@bellsouth.net)

[parentwithgrace October 25, 2008 at 12:17 pm Post count: 8]

#1075700

Dear Nancy,
Thank you. Your math is correct- she is now 12. I would very much like a copy of the bulletin you mentioned — I will email you so you can send it along to me. I also would like to be in touch with other parents supporting the needs of their children with graves. I appreciate any advice, support and insight that can be offered. I feel a great responsibility to do it right for my child. She has a long road ahead and I want to give her every chance to be well. Thank you again.

[Schelle October 25, 2008 at 12:32 pm Post count: 1]

#1075701

Hello, we just found out our 15 year old has graves and is having problems with blood sugar. I just found this site this week but it has given me great suggestions for reading material. I purchased the book Living Well with Graves Disease & Hyperthyroidism at Books-A-Million. It has alot of information and it has the teen aspect of graves also. I am also replying for the info on teens that they can send from this group. I got lucky and my daughters school has already started putting plans in place and will be getting all 6 of her teachers together to inform them of her condition. We finally got the Graves diagnosis but are still monitoring her blood sugar and making dietary changes so they can figure out why her blood sugar stays so high. This group has got me going in the right direction to learn as much as possible about my daughters condition and she is learning at the same time I am.

I wish you all the best
Michelle

[parentwithgrace October 25, 2008 at 1:55 pm Post count: 8]

#1020016

I just found this blog site on graves. I am thankful. I am learning as much as I can to assist my daughter. My daughter was diagnosed with vitiligo in 2000 at age 4, insulin dependent diabetes in 2007 at age 10, and graves disease in June 2008 at age 11. So we realize she has a polyglandular failure syndrome. In terms of the graves– she was treated with methimazole but developed severe sirum sickness to it and was taken to the hospital. Our next decision was surgery or radioactive iodine–not much of a choice for a child. We went with the RAI. She had the treatment a month ago. Her levels are coming down and she is doing better. This has all been very challenging. We have watched our spirited, athletic and talented daughter struggle with all of the symptoms of graves and cope with the difficulities of insulin dependent diabetes control. She is very positive and strong. The most difficult thing to cope with at this time is the brain fog she experiences. School has been very challenging for her– she is in 6th grade — and is a good student. Any advice, thoughts or suggestions are welcome. What do I need to be studying, asking and advocating for her so she can live a long healthy life? What books would you suggest? What do I need to pay attention to? Again I am thankful to find a community to support me as I learn to parent this child with very special needs.

[beanerlynn October 28, 2008 at 7:53 am Post count: 1]

#1075702

i am having a problem finding out if my daughter has graves disease as her tsh always comes back normal but she does have the sweating,shakey feeling, hair loss and is tall and thin and mood swings. she also had a enlarged thyroid on clinical exam and a negative ultrasound which i dont think matters as she just doesnt have nodules. anyone have any suggestions. i also forgot to say i have graves disease and was dx 6yrs ago.

[parentwithgrace October 28, 2008 at 11:00 am Post count: 8]

#1075703

I wish I had some advice for you. We think our daughter may have suffered with Graves for years– but it never came up on blood work. She has had the symptoms but not the diagnosis. No one was going to treat it until the blood work showed it. So she was treated for ADHD — as that is what it looked like she had. It has been very difficult. She is also thin, moody and had a great deal of difficulty with self regulation and body temp regulation. It is a struggle- esp. with the juvenile diabetes on top of it. I am reading Thyroid Solution and find it very helpful– you might as well. good luck. grace

[npattersonModerator November 1, 2008 at 7:42 pm Post count: 398]

#1075704

There are antibody tests that can help get a differential diagnosis. TSI – Thyroid Stimulating Immunoglobulin is one, and there are about three others. TSI is the main one. Subclinical hnyperthyroidism is sometimes hard to diagnose with just a TSH. In his book, Overcoming Thyroid Problems by Jeffrey Garber, MD, he mentions specifically that children may grow faster than is usual, and appear tall for their age. The other symptoms he mentions are behavioral changes, inability to sleep, and short attention spans.

[sjharner2001 November 3, 2008 at 11:29 am Post count: 18]

#1075705

Thanks for the names of books. I’m definitely going to check on those.
Janet

[Author]

Posts