[jordansMOM]

#1060054

Hello my name is Kimberly I’m a mother of 4 boys. Our last little guy named Jordan was diagnosed 2 weeks ago with Graves Disease. I’ve been looking up information about this condition online and I’m having a hard time finding much information related to this disease in young children like him.
Jordan just turned 4 in April and I was at my breaking point. He was so overactive with a rapid heart rate, hot and sweaty all the time, he was eating a lot, gaining weight, not sleeping well, his attention span was gone, and he would have horrible tantrums over the smallest things. It wasn’t until the physical eye changes (protruding eyes) started that made me reach out to my pediatrician and ask for the thyroid panel to be ran, and here I am. When we took Jordan in the next day his blood pressure and heart rate was elevated, his liver enzymes where elevated meaning his liver is also swollen. I’m so nervous because he is only 4! The fear of the unknown for his future is worrisome and I don’t know what to expect because I’m not finding much information on young children with Grave’s. My family is supportive but can be negative at times because they also don’t understand. I’m looking for anyone to talk to that will understand what I’m going through because either your going through it yourself or caring for your child with it.
Thanks for reading

Jordan’s mommy Kim

[Kimberly]

#1179981

Hello and welcome! I’m sorry to hear that your little guy is dealing with this. Most of our posters here are Graves’ patients themselves, but we are happy to answer general questions. There is also a group over on Facebook for parents of Graves’ patients that you might be interested in:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.facebook.com/groups/265484340175004/ [facebook.com]

It not an official page of the GDATF, but was started by a couple of our members for parents to exchange information and give support. It’s a closed group, but if you ask to join and tell them your son has Graves’, the moderators will get you approved.

We do have a search function on this site in the top right-hand corner of the screen, so you might do a search for “child”, “parent”, “kids”, etc. to pull up the threads that we do have on children. You can send a private message to another poster by viewing one of their posts and clicking on the PM icon that appears underneath their screen name. The system will “ping” whatever e-mail address the other person used to sign up to let them know that they have a private message waiting. (You have to be logged in to the system in order to view your private messages).

If you are interested in learning more, we have three presentations from Dr. Scott Rivkees and Dr. Michael Gottschalk on children and Graves’ on our YouTube site:

http://www.youtube.com/user/gravesandthyroid [youtube.com]

Wishing you and your family all the best!

[Gabe]

#1179982

Kim. Welcome. So sorry to hear about Jordan. This disease is stressful in adults so I’m sure your little guy and you are anxious. We’re all patients here so we know what it’s like to have all the symptoms that Jordan has. You’ve come to the right place to get educated, vent, and help your son.

Start a journal, read the Treatment Options paper in the Announcements Section, and Kimberly offered some great suggestions. There are parents of very young children on this forum that I’m sure would love to connect with you and help you.

I wish the best for you and your little guy!

Karen

[ricatca]

#1179983

Kim,

My son Jack was diagnosed in September last year just days after his 6th birthday. He has almost the exact symptoms, but without the eye and heart problems. His behavior was awful and was the worst at school. I know exactly how you feel because even though you try to explain to everyone what is going on they just can’t understand what it’s like raising a child with grave’s disease.
You’re right, it is hard to find information on graves in kids, but hopefully you have a good pediatric endo that will be able to tell you everything you need to know. I read everything I could find on thyroid disorders both online and in books. One of the best books I have is “Living Well with Grave’s Disease and Hyperthyroidism” by Mary J. Shomon. She does a great job of putting together a lot of helpful information.
There will be days where you feel like you just can’t take it anymore because his activity level will drain you completely, and you just don’t think you can handle one more tantrum over something as simple as being out of his favorite snack. Just remind yourself that he’s not doing this on purpose and he can’t help himself. He needs you to help him and give him all the love and support he can handle to make it through this.
My son will be having a complete thyroidectomy next month because we are not able to treat him with medication. Hopefully you are able to just do medication and your son will go into remission in a few months. If you have any questions or just want to vent let me know.

[Kimberly]

#1179984

@ricatca – I would use extreme caution with this book, as it was not written by an MD and some of the info on alternative therapies is unproven and could potentially cause harm. I don’t know if the book has been updated in recent years, but I know that an earlier edition referred to a “vitamin protocol” that could literally be life-threatening to someone who tried this instead of conventional medical therapy for Graves’. Even the individual that came up with this plan has since abandoned his web site and put a heading at the top that says: “There is no scientific proof that thyroid disease can be corrected nutritionally. The editor of this site is not a doctor and has no formal medical training. What works for one person may be dangerous for another.“ Clearly, something bad happened to cause this.

The Foundation’s reading list is generally all materials that were written by MDs, to make sure that patients are getting the most credible information possible. If anyone ever has questions as to whether a particular book is appropriate for posting on this web site, please feel free to PM me or e-mail info@gdatf.org.

Wishing you and your son all the best as his thyroidectomy date approaches! I know this will be a relief to have all of this behind you.

[snelsen]

#1179985

Ricata-You have done a marvelous advocating for your son. I am glad you have had good health care providers for him. I think you will find that he will recover very rapidly from his TT. Probably have less energy than he usually has. Sounds like you have great health care providers for him, and all the communication is up between you, the endo and the surgeon. Marvelous

It is wonderful for you to continue to stay on the site, for when parents write with a child with Graves’, they feel so alone. I hope you stay so you can help others, as well as receiving support from other parents in the the same situation as you with their child. It is hard to find other parents in the same situation. The support is so great for you and others.

Please understand I am writing the following, hoping that the people who read your reference for the Shomom book, will proceed to read the following two posts by Kimberly and myself. I concur with Kimberly’s thoughts and remarks about the book and author you referenced. Her book about nutrition and managing thyroid disease, is downright scary. Her advertising experience works well for her when she writes her very readable books.

Shomon’s disclaimer is very telling. I’m guessing it is the result of a lawsuit, and/or she is being careful to protect herself. Here is her education.
Tells A LOT about her. Here is her education. In a nutshell, she has a finance degree she never used, but has an extensive background in advertising and commercial advertising ventures. And she has Hashimoto’s thyroiditis.

Here is her education. Summary, a B.A in finance. That’s it.

“Shomon is a 1983 graduate of Georgetown University in Washington, DC, where she earned a Bachelor’s degree in International Finance from the Edmund A. Walsh School of Foreign Service. She worked in advertising and marketing for a number of advertising agencies and grassroots outreach companies, developing advertising and outreach campaigns for commercial and non-profit clients. Shomon was diagnosed with Hashimoto’s thyroiditis, an auto-immune thyroid condition, in 1995, and this became the impetus for her involvement with online thyroid support groups, and ultimately, the creation of her thyroid-related web sites and her work as a patient advocate. In 1997, she joined with the Mining Co., (now, About.com) to create the Thyroid Disease web site, and her site went live when the company was launched in April 1997. She continues as Thyroid Guide for About.com as of February 2007. Recently in June 2008, she led a workshop called Living With Thyroid Disease: Creating Your Wellness Plan at the New York Open Center [1]. She also writes, edits and maintains a number of other thyroid and health-related web sites.”

And the following is copied and pasted verbatim from her website.
It is in very light print that is difficult to read, at the very bottom of her website, where will see it or read it.

“Sticking Out Our Necks and the contents of this website are © Copyright Mary Shomon, 1997-2011. All rights reserved.
Mary Shomon, Editor/Webmaster, P.O. Box 565, Kensington, MD 20895-0565.

All information is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions.
You should seek prompt medical care for any specific health issues and consult your physician or health practitioner before starting or changing any aspect of your medical treatment, diet or fitness regimen.
Please see our full disclaimer.”

Shirley

[Kimberly]

#1179986

Hi Shirley – Just to clarify, the disclaimer that I mentioned came not from the author, but from the web site of the individual who came up with the “vitamin protocol” referenced in the book. Agree, though, that a lawsuit was the likely cause for the disclaimer going up!

[Boomer]

#1179987

Hey there Kim!

I’m SO glad you found this site- there is a wealth of good sensible info here that I’m sure you guys will find helpful as time passes.

I’m so sorry to hear about your little dude – I can’t imagine how difficult it must be for the whole family. The good news (gotta look hard for good news sometimes huh?) is that Grave’s can be treated and your little trooper will probably bounce back faster and with less fussing than we adults. I guarantee that he whines less than me- I’ve got the market cornered in that department…

You really sound like you’re on top of things and doing a great job looking out for your son but should questions or concerns arise be sure to take advantage of the knowledge base here- it’s really been a godsend for me and so may others so don’t be bashful!

I look forward to hearing good news as your sons moves back towards health. In the mean time hang tough, stay courageous, and stay positive!

Peace and health to you and yours,

Boomer

[ricatca]

#1179988

Kimberly and Shirley,I do agree with you both on certain parts of Shomon’s book. I knew going in that she is not an M.D., and I only skimmed through the chapters on alternative treatment because I don’t feel there is a way to “cure” a thyroid condition through diet.

I only recommend her book for the information given about symptoms, what certain tests are for and because i found the information given from a patient perspective to be helpful in understanding what was happening with my son.

While I think that it is a good place to start when you are looking for information to discuss with your endo, I would never suggest someone try to use the book as a way to treat their thryoid condition without the supervision of a Doctor. Right after my son was diagnosed with Grave’s I bought the book and tagged a number of pages to take with to our first few appointments so that I could ask questions. It helped me to better understand what the endo was telling us, and was a good tool for putting together a list of questions.

[brondack]

#1179989

I certainly would agree with Kimberly about NOT recommending people to read that book. How can you get across the idea that some parts are worthwhile – but others parts are downright dangerous to follow ? It would be a tragedy for someone to read and follow all parts of that book and have someone in their family suffer (or worse) because of it. While there may be some good parts to it, I don’t believe it is worth the risk. Those ‘good parts’ can also be found from several other, much better and safer places.

[Stymie]

#1179990

I am so sorry you are dealing with graves in such a young one. It is hard for us as adults to manage this let alone a child.

My advice to you is just to be his advocate. And do what you feel is best for your son.

God bless.

Diane

[wendyh]

#1179991

Hi kimberley

Sorry to hear about your lille boy. My 3 year old daughter has graves disease, rapid and enlarged heart and a goiter. At the moment she is on 30mg of carbimozale and 15mg of propanalol. Her levels havent stabilised as yet. Due to repeat tests next week. She has had this for a year and been on medication for 7 months. There doesnt seem to be a lot of knowledge with graves in a young child. I know what you are going through it terrible watching their mood swings etc… the endo mentioned rai treatment but very afraid of this as there are risks later on in life. Is your little one on meds and how is he doing. I will keep u posted on my daughter and would be great if you keep me updated on jordan. Thinking of you -you are not on your own

[jordansMOM]

#1179992

Thank you all that replied, your comments made me feel a lot better that i’m not in this alone. I know its been 6months, and truly just getting to read these post…sorry:-( but its been a battle with Jordan. It took him 4 months to start responding to the Methimazole and a lot of reading and praying on my part. It’s taking me a few months to even talk about his condition without crying. Its hard watching him go through what he’s going through at 4yrs old! But as of today I can happily announce his liver and heart are now normal but we’re still battling getting his T3’s and T4’s withing normal range. This month his T3’s were 254 and t4’s 1.8. instead of going down his numbers went up this month, so now we were instructed to give 30mg of Methimazole and consider RAI or surgery. I’m nevous about both and treatment options but hoping this increase in medication will buy us some time.
Thank you all again for your responses…

jordan’s mom Kim

[CTquinn]

#1179993

My almost 6 yr old boy was just diagnosed with Graves and Graves opthalmology complications. He’s had it for at least 6 months (eyes have been bulging since then), but neither our PCP or urology doctors caught it until end of November (my child also has kidney disease, found at birth). The one who caught it? A substitute PCP because our PCP wasn’t available for a visit. Thank god for the sub.

There is so little info about HYPERthyroid and Graves for kids. There’s so much info for HYPO and diabetes… why hadn’t I heard of Graves’ disease before???

I’m looking for support and haven’t found much in my area, Seattle. Hoping someone here can help. We’re at Seattle Children’s, and I am thankful for that, but I still haven’t found any emotional support for it.

This is a lifelong disease, and he’s only 6. Rapid heart rate, extreme muscle fatigue, sensitive to light, anxiety and irritability (quick to tantrums), and we’ve got his hydronephrosis (kidney disease) to handle as well. …..

I hate this disease for my kid. I hate this disease for any body. I hate this disease.

He is on methamazole 3x a day and antenolol 1x a day, plus eyedrops and eye lubricating cream at night.

Lifelong. and we’ve just started. And i’m stressed, though trying not to show it to my boy.

[Author]

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