[parentwithgrace]

in reply to: Autoimmune Disorders #1073371

[color=#8000BF:2qouohc6]My daughter developed vitiligo at age 4, type 1 juvenile diabetes at age 10 and Graves Disease at age 11. So she has quite a load. Right now the Graves is the most difficult for her. She had her thyroid ablation in late Sept with radioactive iodine– and went on levoxyl in December. Her muscles still ache and cramp so she has not been able to resume a normal level of activity yet. She loves to run, play soccer and lacrosse but just can’t do it. It hurts too much. We have her blood tested every 6 weeks and they have adjusted her levoxyl levels every time. Any advice or comfort is most welcome. Thank you so much. [/color:2qouohc6]

[parentwithgrace]

in reply to: Radioactive Iodine Treatment on Teenage Girls #1075615

Hi Tisha, Our daughter had RAI treatment– we live 2 hours from the Childrens Hospital where the treatment was to take place so we stayed in the city for the week for the various tests and preparations. The actual dose was on a Friday and she returned to school the following Tuesday. If you lived near the hospital you could arrange RAI on a Friday and your daughter would only miss school on Friday and Monday– as the tests and procedures prior to the RAI are quick only requiring an hour or so of her time. Just thought I would share as your daughter is worrying about school. As was stated if there was an alternative we would have chosen it but this was the best we could find and you do not have a lot of time once the Graves is unmedicated to make a decision and work towards good health. Things can change fast. I know how difficult this all is. I have lost a lot of sleep over the worry– but we have a great doctor that cares about our daughter and I wish you the same. grace

[parentwithgrace]

in reply to: My son has Graves and we have questions #1075339

Hi Shannon, Our daughter is 12 and she had RAI 7 weeks ago. We were in the situation you are in surgery or RAI– (you can find my earlier post explaining more). It became clear surgery was not a safe option as there are not surgeons that have done this procedure thousands of times on children and it is a delicate surgery perhaps effecting the vocal cords. I have been told Graves is rare in children so that is partly why there are not skilled surgeons for this. So we decided on RAI. It went much as Nancy described–We spent the week preparing with various tests and then on a friday she had the dose and we were out of the hospital and home. We did take more precautions than mentioned for the 3 days at home such as washing her dishes separate from ours, using her own bathroom, not sharing bedding, clothing etc. We had a list of precautions and we followed all of them. She carries a card that she had radiation treatment also incase she sets off an alarm somewhere!! ” title=”Wink” /> She has been taking SSKI twice a day to support the RAI treatment. She has had blood work done every 3 weeks. There have been ups and downs during the thyroid imbalance and lots of brain fog. She has handled it well and I have kept a close eye on her offering all the support I can. We received great news yesterday from Fridays blood work — she has gone hypo thyroid and we will start replacement therapy tomorrow. If anyone has advice for us in this next phase we are glad to receive it. So overall it has all gone well. I have read as much as I am able– this site has been very helpful and I found the book Thyroid Solution helpful too. I hope this gives you some reassurance– I would be happy to talk more as you go thru this. take care of yourself too– I know how stressful this is as a parent. grace

[parentwithgrace]

in reply to: Radioactive Iodine Treatment on Teenage Girls #1075611

My 12 year old daughter had RAI treatment about 6 weeks ago– we really did not have a choice. We are in the midst of it all right now and learning as we go. I agree with all that was posted here in relation to the risks– we were told the same thing and I am reading the same thing and I have met 6 woman that had RAI and they say the same thing….so leap of faith and lots of hope. Good luck and hopefully we can all help each other thru this online. grace

[parentwithgrace]

in reply to: Daughter just diagnosed #1075681

Hi Lynne- our daughter was diagnosed with Graves June 08– she tolerated and improved so much on methimazole for 8 weeks and then she became allergic– she had a severe reaction. Left with no options (likely she would react badly to PTU too-and surgery is not an option really for a child) she had RAI treatment 6 weeks ago. We are still coping with many symptoms but she is 12 and able to discuss how she feels and work with us as best she can–and when she is able. She has had lots of difficulties though as she also has type 1 insulin dependent diabetes (auto immune) I have been reading Thyroid Solutions and I just started The Autoimmune Epidemic by Nakazawa to help me better help my daughter. I wish we could attend a support group or find more help around this but sadly this is an unusual situation for a child be in and there is little to offer in the rural area we live in. So I just wanted to reach out to you as you are not alone and perhaps we can form a group online for parents of children with graves and other related auto immune issues? take care- grace

[parentwithgrace]

in reply to: my child has graves disease and more #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

[parentwithgrace]

in reply to: my child has graves disease and more #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.

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