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[momof graves]

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Hi, I am a mom of three and my last son was just diagnosed with Graves disease. I've known something was wrong with him for about a year now. Diarreah/loose stool had started about six months ago. I had him tested in May for our school district for developmental preschool and he got in for speech therapy and physical therapy due to "low muscle" tone. I'm so worried about my son with his development and the endo said that had nothing to do with his Graves disease but all his other symtoms were corrilated. We are going to do the medication route first before we do more drastic approach as far as surgery or the radiation treatment. I've been reading a lot about diet on this subject and will take that approach as well along with the medication. It has been a long road leading up to this diagnosis. I took him in for his well check after several visits for the "diarreah" and them telling me to limit fruit and dairy intake. Well I just had enough and all my frustration came out in his well visit! The doctor was looking him over and noticed a heart murmur and sent me to a cardiologist who then came back and said that my son's mitral valve was reguritating and the aortic valve and pulmonary valve were enlarged....WHAT...causing the left side of his heart to be enlarged. She then told us we need to go see a geneticist because she thinks he has a connective tissue disorder because of his loose joints and the heart being the way it is. The endo thought if the cardiologist knew about the thyroid she wouldn't of suggested this? Maybe his bulging eyes and slim face and body etc. had prompted this(his right side of his chest is a little indented)? I dont know but now I'm just waiting for my opthamologist apmt to see if he can see anything wrong with his eyes before we go to a geneticist. I guess I'm just a mom who is overwhelmed with all this info and I can't get it out of my mind that he might have something else wrong other than Grave's. Has anyone else had a small child have similar problems with developmental, low muscle tone, loose joints,and all the other symtoms of Grave's (rapid heart beat,elevated blood pressure,sleep is crappy, moist skin, feels warm to the touch, does not like sun in his face) I love my son and want him to get well and will do anything to achieve that! I just hate waiting around for doctors and want to know if anyone else has had my experience. His lab teats came back as markebly hyperthyroid with his antibody test confirming Graves.....has this autoimmune disease caused all of this or does my son just have an array of things going on...very frustrated!

[mmztcass]

Hi and welcome:

 

I don't have a child with Graves' Disease, but with subclinical hypOthyroidism. My son is 18 and is also a recent diagnose with Type 1 Diabetes. My son is not on any replacement meds for the slight hypO symptoms he has along with the blood sugar symptoms. He watches his diet and is avoiding all known triggers which can make hypOthyroidism worst. So far so good. I also have a 15 y/o who acts like this with hypO symptoms and I should get him tested but I have him follow the same procedure as his brother for now with the diet.

 

I would suggest you read here at Thyroid 101 to know and stay on top of things for your son. I am sorry he is suffering. It is hard when it is a little child that is happening to.

 

I hope your son is on some ATD (antithyroid drug)?

 

We did have a few parents with children coming to the board lately and the past year. It would be nice if they would come back and let us know how their child is doing and if they're doing better as well.

 

{{{hugs}}}

[dana123]

I hate hearing of these things when children are involved, I send you big hugs and strength for your little boy.

 

As an adult I struggle with graves and to think of a child having it breaks my heart. xox

[julieann]

Hello!

 

I really hope that you are still reading the responses to your post. It has taken me since I was diagnosed, at age ten, to join this forum. I am now 21. When I was first diagnosed with Graves disease, I was in critical condition and for several months after my diagnosis I could not participate in normal childhood activities. I missed several weeks of school and stayed on the couch all day because that was all I could do. The only time I was allowed to get up was when I had to use the bathroom. I began my treatment for Graves Disease through use of medication. When I was 13 years old, I went into remission! Although this did not last long, I can honestly say those few months I was in remission were truly a blessing! I released and began my medication again. Although I was truly saddened by this all I wanted from the day I got diagnosed was to be a normal kid again. I eventually had my thyroid removed when I was 16 years old. I now have hypothyroidism. I feel as though this option was best for me because I was at risk for thyroid cancer. Try to keep your child on medication for as long as possible before removing his thyroid. I say this because there is a chance that even for a few months your child could go into remission. Remission is a wonderful gift. One thing that made a huge difference in my diagnosis and treatment was my endocrinologist, Dr. Stephen Duck. Obviously since I am now 21 I need to go to an adult endocrinologist; however I am having a very hard time accepting this change. Dr. Duck saved my life. I could have died the day I got diagnosed. It has been very hard for me to transition into seeing a new doctor. And even now I get upset and teary eyed just thinking about the change I will have to make. I do not know much about how my parents reacted to the news of my diagnosis but I will say that your strength is everything to a child who has graves disease. They do not understand what is going on fully and it is scary! I will never forget the day I was diagnosed. Although my thyroid was removed I still have problems because of my graves disease. One of the major factors of childhood graves disease is stunted growth so try to drink lots of milk! Another thing is to remember that childhood graves disease is not fully understood and research is limited. You can find out a lot online but most of the information pertains to adult cases. I find it easier to take one day at a time. Each day is a blessing in my life and I am aware that graves disease is going to present obstacles in my life but I have the strength to overcome them and I want you to know that Graves disease has made me who I am today! It has given me my strength and courage to stand up and say yes I am different and I have Graves disease but I can achieve so much. I am currently working on getting my bachelors in science for psychology and I will hopefully be going to graduate school in the spring of 2014 for occupational therapy! Please as your child grows up remind him that graves disease is a part of who he is but not all of who he is! He can still define who he strives to be.