[ricatca]

#1060051

So, in September last year my 6 year old was diagnosed with Graves. We’ve been on a roller coaster since then trying to get his body to go into remission with meds and it hasn’t worked. Every time we tried to lower his dosage his symptoms would return and his monthly lab results were never consistent. His TSH would say that he was hypo, but his T3 would say that he was still hyper. We just met with a surgeon and have scheduled a total thyroidectomy for July. My poor baby has been through enough, and while we were at least blessed with him not having the horrible heart complication that others do with Graves we have been constantly battling the horrible behavioral symptoms for almost a year.
What I’m wondering is if there is anyone that has had their thyroid removed or has a child that had their thyroid removed at a young age that can give me an idea of what to expect in the months after surgery? We know all of the basic information about recovery time from our surgeon, but he can’t really tell us what life will be like for our son as his body adjusts and begins to function without his thyroid.

[Stymie]

#1179962

Hi

I don’t have a child with graves. But I Just wanted to wish you both good luck with your TT and the journey after.

Hope everything turns out great.

Diane

[SueAndHerZoo]

#1179963

So sorry your son (and you!) are going through this…..there’s nothing worse than feeling helpless when our children are not feeling well. Hopefully this will all be a distant memory in a few months.

I don’t have any first hand experience with TT but I also have one scheduled for July (the 16th) so perhaps we can compare notes afterwards.

Good luck, and keep us posted.
Sue

[JeanetteCM]

#1179964

Just wondering how the surgery went. My 10 year old was diagnosed with graves at age 5 & we’ve put off the decision of rai vs surgery because she’s well controlled on 3.75 mg of methimazole daily. It looks like we have to make a decision & have always leaned towards thyroidectomy. All the physicians are trying to convince us rai is best option. Our daughter also has type 1 diabetes diagnosed shortly after graves- that was a rough time!

Hope the surgery went great! Where did you have it done?

We go to Motts/ U of Michigan.

[mistrepl]

#1179965

My son also just seen the endo at u of m/motts and they recommended RAI as well. Though we are seeking a second opinion, we are struggling with giving our son the RAI. We are heading to children’s hospital in Detroit Monday to see what her opinion is. Would love to connect with other on here with kids going through graves. My sons main problem with it is high BP. Though we did just have a echo, EKG and ultrasound of his heart and know that there is currently no damage to his heart from the high BP. We have opted not to try the meds and look for a more permanent solution (RAI or TT).

[Kimberly]

#1179966

@mistrepl – We don’t get a ton of parents posting here, but I do know there is a Facebook group for parents. It’s not an official group moderated or controlled by the Graves’ Disease and Thyroid Foundation, but it includes many family members who have come together to share their personal experiences. They are located at http://www.facebook.com/groups/265484340175004/.

It’s a closed group, but you can request to join, and the organizers will send you a questionnaire to confirm you are a Graves’ parent. (Unfortunately, they had to start doing this to keep spammers out of the group).

Wishing you and your family all the best!

[Megan]

#1179967

Hi everyone! Maybe my experience may help?
I am sixteen years old now and I was diagnosed with Graves Disease when I was five years old. Needless to say my childhood (from what I can remember) was painful and confusing. I didn’t fully grasp what my disease meant until I was nine years old. Since then I had done all the research I could and was terrified. I felt as if I was in this alone because my parents tried to downplay Graves as to not alarm me and I was the only one who wanted to get the thyroidectomy. I went through constant ups and downs on the medications but with no one agreeing on the thyroidectomy plan of action like I was, I had no choice but to stick it out until I was eighteen.
That all changed when I turned fifteen. My mom and I attended our first Graves convention and she was floored by all the suffering I had experienced in silence and all that I would experience later in life. By no means is this disease unbearable, although sometimes when I wallow in self pity like every teenager does it can feel that way. My mom and I FINALLY agreed that surgery was personally the best option for my course of treatment. Everyone is different and responds differently to different treatments.
Just before I turned 16, on June 26th 2013 I had my thyroid completely removed. It was a hard recovery, I won’t lie I was in a lot of pain, but there was no part of me that regretted going through with the surgery.
I remember when I was a kid I got made fun of for having vitiligo, having a bulge in my neck, for crying for no reason, for being too hyper, for gaining weight out of nowhere, and when I was young it bothered me. Now? I’m stronger. It still stings when people criticize me about Graves side effects but I am secure enough in myself to let it roll off my shoulders. It was tough and probably always will be but something Graves gave me that is a great attribute is it gave me unwavering strength, empathy, and bravery.
One thing I struggle with now that some other teens/children with Graves may struggle with as well is that I don’t know who I am without this disease. Adults sometimes reminisce about how they changed when they developed Graves but I don’t know how I changed because I developed it before I even really developed myself. I have always had Graves and I always will, it is a part of who I am. Another thing that I have come to terms with–yet still internally battle over–is that Graves does not identify me. It may be in the fine print at the bottom of my identity but it is not the header or the paragraphs of my attributes below it. It is at the bottom for no one to see but those who I chose to tell and it does not define who I am. There’s hope, I’m living proof of that. I do think teens/children with Graves need a stronger support system than what is available now so if anyone ever needs to talk I’m all ears.
I hope this helps and if now, thank’s for sticking it out and reading till the end.
~~Megan.

[Kimberly]

#1179968

Thanks, Megan, for such a thoughtful response! You have maturity, insight, and compassion well beyond your 16 years! Wishing you all the best in all your future endeavors!

[SallyB62]

#1179969

Megan, I am absolutely floored by your response. You have summed up the full range of Grave’s that I wish docs, family, and patients would understand. At 51, I am still trying to express this to people. . . Get them to understand. Just because the thyroid is gone, Graves disease is never gone. We live with it, adjust to it, hopefully successfully meld it in our lives.

I wish you the best in finding out about yourself, what is Graves, what is not, the tapestry of your life.

Thank you.

[CTquinn]

#1179970

My god… I’ve been wondering how my son feels about this, and even though he’s only 6, I bet he can relate with your post.
Thank you for posting from a kid’s point of view. Thank you thank you thank you.

[Author]

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