[samsmom]

in reply to: RAI – 6 yr old son #1061069

Hi-
My daughter was diagnosed with Graves when she was 5. She is 8 now and is scheduled for RAI this Thursday. We chose (or I should clarify and say that she chose) RAI after trying medication for three years. I was hopeful and would cross my fingers every time they took her off to see if she was in remission. The longest "break" we had was for 6 months. But before jumping to RAI you should discuss all of your questions and concerns with you endocrinologist. If you do not have a pediatric endocrinologist then I would highly recommend that you try to find one. Not all endocrinologist have experience in working with children’s Graves since it is not common. We drive an hour and a half to a childrens hospital but it is worth the trip.

I hadthe same concerns that you posted about RAI but I’ve asked a lot of questions. After three years this really is what we (my husband, daughter and I) feel is best for our daughter.

Best of luck to you on your journey.

[samsmom]

in reply to: Pediatric graves diseas #1063415

Hi Lori-
My daughter was diagnosed two years ago with GD just before she turned 6. I’ve said before that we were fortunate to be referred to a great group of endos at a children’s hospital. She took methimazole for almost two years and then was taken off. Her labs came back normal and she was off of medicine for almost 6 months. She just went back on because her TSH dropped. There are a couple pieces of advice that I can offer to you as a parent of a child with Graves: 1. find a doctor that understands pediatric graves if at all possible. We drive an hour and half to a children’s hospital, but it is absolutely worth it for us. 2. do not be afraid to be an advocate for your child. You know your child the best. I’ve gotten to the point where I will request a different lab technician for blood work if I know that it is someone we’ve had a bad experience with before. I’ve also had talks with teachers that think maybe she is just using this as an excuse and maybe isn’t tired but just doesn’t want to do homework 3. listen to your child even though she is young. My daughter has become well versed and will tell me when she is not feeling quite right. She will also tell me when she is feeling great. 4. Keep copies of all of your labs. It is really important information. I had no idea until someone else told me that I could request copies of my daughter’s labs. Not sure if this is the policy everywhere, but it does not hurt to ask. 5. It’s ok to cry and feel frustrated. We adore our children and want them to feel wonderful all of the time. Hopefully, you have someone that you can vent to and this website offers you a great place to do that. 6. Please remember that she will feel better. This is a journey of ups and downs, but the good moments do arrive. I was just reading another post that asked about blessings and positive things that have come as a result of GD. I can tell you that my husband and I realize that we have an incredibly strong and bright daughter who will grow up to be an amazing woman. I am by no means an expert, but our family has been on this journey for a little while. Please feel free to send me any questions or to just simply vent. I wish you and your family the best.

[samsmom]

in reply to: New on here, parent of child with gd #1064244

Hi-
I have a 7 year old that was diagnosed a couple of years ago. When she was first diagnosed, I hit the internet and wanted to read everything that there is to read about pediatrict graves. However, as I’m sure you’ve found out, there aren’t a lot of kids out there with gd. I don’t have much time to write now, but wanted to post and say hang in there. I know that it is difficult to watch your child get bloodwork and feel just plain lousy some days. But it does get better. The key for us wasa great endo that has a pediatrict background. We were blessed to have a pediatrician that was able to connect us with a children’s hospital. On a side note, my daughter is also high maintenance. I was convinced that it had to do with her gd and brought it up several times during her appointments. Wrong. It is just her personality. Perhaps the fact that she is so headstrong and stubborn is what has made this journey a little easier for her to conquer. Please feel free to contact me if you need to vent or just share stories.

[samsmom]

in reply to: Hyperthroid with inflammed thryoid #1064310

Hi-I have never posted before, but read posts often. I have a 7 year old who was diagnosed with GD two years ago just before her 6th birthday. She is being treated by a great group of endos at a children’s hospital. She was on Methimazole for the two years and has been off of it for two months.

Anyway…..one of the many things I was told to keep an eye out for is a soar throat. They told me that if she has a sore throat I should have her labs run because it could be a side effect of the methimazole. White blood cells???? Fortunately, the two times that it happened it was just the beginning of a cold. Not sure if this helps or not, but thought that I would post just in case you find it helpful. Best of luck to you.
-Maria

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