6 Year Old Son With Graves....I Need Help!

[bmxdad]

Hello Everyone,

You may have seen me post questions regarding my own Thyroid issues as of late (Surgery for total Thyroidectomy on Saturday Oct. 24th.).  However, my 6 year old son also has Thyroid issues....He was diagnosed with Graves last December when he was just 5 years old.  I / we have a great Endo. who has been so helpful and caring, but I need some other opinions on what I should consider for my sons long term care.

He is currently being treated with a block & supplement approach.  He is taking 5mg of Methimazole twice daily and he also takes 75 mcg of Levo a day.  It has been hard to get his meds straight (He flips between hypo & hyper), but overall my son is doing well.  Now that I am facing a Total Thyroidectomy (I have Hashi's & a Hurthle cell nodule), I think so much about his future and what can I do to ensure him a normal life.  My son is very smart and very athletic, he is tall but thin and is a great kid.  

Our endo. told me that he does not believe that my son's Graves will go into remission.  He told me that he can usually get a feel for which people will and which people won't within a year or so.  He has expressed to me that it would be easier to treat him with RAI131 and then get his meds adjusted so he can maintain a normal life without all of the ups and downs.  I agree that something needs to be done, but I am NOT 100% convinced that RAI is the option at this point.  Our Endo is very supportive and told me that he will do whatever I want to do at this point.  I feel that the block (Supress) & supplement is the way to go for now....BUT NOT FOR EVER!

Here are some questions I have:

1.)  Should I have my son do the RAI131?  If so what are the possible complications short term and long term?
2.)  Do I continue the block & supplement approach & if so for how long (I hope he goes into remission)?
3.)  Do I have part of his Thyroid removed?  If so, at what age?

These questions are very tough decissions that I am going to have to make in the near and far future.  It scares me too, I don't want to do anything to harm him....I need to take the best, safest & most effective route?  Please any info. or guidance would be most appreciated!

Thanks!
Karl (BMXDAD)

[magpieannie]

Everything will be okay! I'll be praying for a successful outcome to your surgery. I think when surgery is behind you, you'll be able to deal with your son's issue/health more clearly. Right now, focus on your health.I think Tamra's advice is good. I'd hold off on radiation and/or surgery for as long as possible on a child. My daughter is on desiccated thyroid now and doing well. (Nature-throid). Good luck tomorrow. Please let us now how you are doing later.  God Bless!

[TamraW]

I don't know it all. Far from it. But you can message me anytime. I check my messages throughout the day.

:) Tamra

[bmxdad]

Tamra,

Thanks for everything....You are lucky I don't have you on speed dial or I would drive you crazy...LOL :-)  I am just a mess lately....I'm always worried about my son, and now I am worried about myself too.  I need to be healthy so I can take care of my boy!  I hope & pray that everything works out for us.....My family needs something to smile about.  

Thanks Again,
Karl (BMXDAD)

* I am still all ears for more information!

[TamraW]

Karl, according to Ridha Arem, MD, author of The Thyroid Solution, he does not advise RAI in children. He only recommends it in patients 45 or older. This is a quote from his book, page 254:

"Once recent study, for instance, concluded that the occurrence of stomach cancer may increase years after the treatment, particularly in younger people. Because these concernes are not quite settled yet, it is perhaps safer to treat children and adolescents with medications frist and consider radioiodine treatment for young people as a last resort."

Page 255:
"I tend to recommend surgery for children and adolescents who have not responded to the medication..."

Because long term effects are not yet conclusive, I would not give my child RAI. If she absolutely had to have her thyroid destroyed or removed, I would chose surgery by a top surgeon. Your child will also be able to regulate his medication faster, rather than waiting for months for the thyroid to die. I know I've said this before, but Synthroid or Levo is not the only option. Many people have less hypo symptoms with Synthroid/Cytomel combo. Many people do better with dessicated thyroid like Nature-Throid. If he does have RAI or surgery, you may need to be persistent with your doctor about treating your son's FT4/FT3 levels above treating TSH, so that he reaches optimum health.

Auto-immune diseases tend to be hereditary. My mom and I are Hashi. I'm sorry you and your son are going through this. Whenever my little girl complains that she's tired, I panic and feel her thyroid and take her temp. Luckily, she's still in the 98 range and her neck feels normal, but I will always worry.  

:) Tamra

[bmxdad]

Thank you so much for the reply, support & kind words.  My world changed last year when my son was diagnosed with Graves.  Just about a month ago I was diagnosed with Hashis and they found a Hurthle cell nodule in my Thyroid to top things off.  I am having surgery tomorrow.....I am so scared, but not for me....I am scared that if something happenes to me, that my son with suffer even more.  I am so in tune with him, he is my clone.  I was the one that figured out what was wrong with him last year....NOT his regular doctor.  I was so mad when I / we kept getting blown off.....I looked for help, read everything I could find and found new doctors.  My wife and I almost got divoriced over it because, she was not taking things as serious as I was, and she was blowing it off too (Listening to my sons doctor, they both thought I was nuts!).  When she found out that I was right, we both pulled together and made our son the number one priority.

I will never stop looking for answers and for the help he needs until I am six feet under!

Thanks Again!
Karl (BMXDAD)

[magpieannie]

Hello! I always chime in when I see a post for a child. I also have a child who has thyroid issues. My child is my daughter, who is now nine and  was born without a thyroid gland. I am no graves expert, but I can share a little with you of what life would be like without thyroid function.It is not always as cut and dry as the endos. make you think. My daughter's use to tell me that it wasn't that big of a deal as long as she"just takes her Synthroid pill each day for the rest of her life, she will have no problems and be normal (no problems) in every way!" I wish this were so easy, as she has always suffered with hypothyroid issues, especially on Synthroid  (synthetic t4). Please read my journal article on my profile page to see what a hypothyroid life with no thyroid function can be like for a child. Due to reality,  I would get lots of opinions from other specialist and would not jump into anything too fast. I would also seek out opinions from others, as you have here, who have experienced all the things that the doctor is suggesting. I would say that these procedures/surgury are of a last result when dealing with a young child. Remember that the decisions that you make for him now are isssues that he will have to live with for the next 90 years! You must look beyond childhood, as it is short in compairison to the rest of his life. We will have to answer to them as adults someday, so we want no mistakes here! As a parent who is also trying to make the best decisions for their child's health, I can relate to what a load you are carring here! It is really hard sometimes to know which direction to turn next. We love our kids so much and we just want to have them feeling well again so that they can "just be kids!" I wish it was all as easy as the "specialist" portray! In a perfect world, it could be I guess? I have tried to educate myself as much as possible on my daughter's condition. I read everything that I can find in books and online. I don't take any one doctor's word as "gold" amymore, no matter how much I like them or how long I've used them. They are only human! They can be flawed and swayed just like the rest of us, with a wide range of perspectives on the same issue. No matter which way you cut it, the "thyroid" world is difficult! You and your son will be in my thoughts and prayers. Good luck and God Bless!

Psalm121 :1-8  "Look up, your help comes from Me, the maker of Heaven and earth. I will not let your foot slip; I watch over you day and night...I will keep you from harm..both now and forevermore."