Apr 10, 2016
I came across a thread about children with Graves' Disease. I also believe that Graves' Disease need to be researched more, especially in kids since its so rare to have a child diagnosed with it. It is always misdiagnosed and takes the wrong kind of specialty area (e.g. cardiology for the fast heart rate or psychology for the anxiety and lack of concentration) to find nothing wrong with them, when there was with all of these presenting symptoms.
I was diagnosed when I was 15 with Graves’ Disease. Like some people mentioned, I was also misdiagnosed with ADHD. I still vividly remember the first signs of Graves hit in late 2012/early 2013 with fatigue, nausea and appetite, especially when vacationing in Hawaii, then later progressing to trembling, weight loss, poor grades and much more. I also vividly remember the day I was diagnosed in February 2014, in the ER and PICU where everything quickly in place since I was in a 'Thyroid Storm' episode. I was a sophomore in high school and it sucked and was in denial to be honest.
I was on 45 mg of methimazole, 0.9 ml of Lugol's solution and beta blockers (I've forgotten how much) to take over the day in 3 doses for a week. Once I was on my feet again, I remember that I wouldn't see my Grade 12 graduation, that is happening this year, if I didn't get any treatment when I did since I would have had a stroke from having my mini seizures, especially when I do sudden moments or doing cardio (e.g. running or doing jumps at my dance classes) or a heart attack from my heart going so fast.
Two years after diagnosed, I'm really thankful that I'm alive today. I am on 5 mg of methimazole daily at the moment. Now looking back at my journey, I have lead a completely different life now that I’m feeling way better than before diagnosed. I am hoping to be officially in remission after having a TSI antibodies test in a few weeks and another endo appointment in a month.
If I had any advice to anyone, especially parents for parents with children with Graves' Disease, my advice would be open with them, be sure that you see the signs early because kids, including me, don't know better. You don't want any kid to struggle this pain that Graves' brings. I had it undiagnosed for almost two years and wished that I could have been diagnosed earlier and not ending up in emergency in critical condition. After an experience like this, I didn't want anyone to be feeling terrible, like I did and wished that I didn't have it.
Also be open with them with this disease will bring (e.g. the medications, all of these doctors appointments to worry about and that it is a life long disease). I had to accept that I had to take medicine for a prolonged time, even though I was in denial. It took me a good month that I needed to take medicine for awhile. I’m also still accepting that it's a life long thing that I have to deal with. I also need to be patient, especially with my doctors since you have to trust that they know what is best for me and what steps to take after each appointment because treatment takes awhile.
If you have any questions, please feel free to get in touch with me.