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Usually doctors have a reason for wanting to move a patient from a treatment that is “working” to another one. It is really important that you try to find out precisely WHY the doctor has suggested the change from meds to RAI.
It is quite typical for Graves patients to start out on the drugs, and this has been the traditional treatment for children. It is also typical, after a period of time, for doctors to suggest that the diseased thyroid be removed permanently. There can be extremely good medical reasons to switch treatments, and you owe it to your daughter to be sure that something like that is not going on here. (For example, if the doctor has noticed on blood tests that her liver is being adversely affected by the drug, that is a very good reason to try a different treatment option: why risk an absolutely vital organ for one that is not?)
Bobbi — NGDF Online Facilitator
My 7 year old daughter was diagnosed 24 months ago with Grave’s disease. It is well controlled with tapazole and regular blood tests. My concern is this, her endocrinologist wants her to have the RAI. I had asked him to wait another year to see if she goes in remission. He was not happy about the idea. Has anyone encountered this situation.
You cannot imagine how happy I am to read your post. Not for you or I but to know that there is someone else who has a child with Graves. My daughter is also 7 years old and we were just told she has Graves.
I thought I was the only one with a young child who has this. The doctors typically have teenagers and I cannot find a Dr. who has had a child as young as mine. I did another posting because I saw someone who questioned if their child had Graves. Look at that posting it gives a bit of history to my daughter and I.
I wish you all the best. I know!!! what you are going through. Please respond back.
Thanks
DebbieDebbie,
You are not alone. My daughter had bald spots and was put an ADHD medicine for several months until she ws correctly diagnosed. We have found several pediatric endocrinologists who have dealt with young childen with thyroid diseases in Cleveland. They all seem to treat it slghtly differently depending on the cardiac and other system complications. The one ray of hope we see is that they do say that some of the young children with Grave’s disease will go into remission for a period when the are treated with meds.maui
Maui,
How is your daughter doing?
I can easily see how drs. could say a child is AHDH when they really have a thyroid issue. How are they treating her? with meds?
and what meds?My little girl is on methimizole 20 mgs. 2x a day
and she is also on propranolol 20 mgs. 3X a dayfrom looking into other people’s listings…this seems to me to be a high dose. Not sure if dosage done by weight, level or hormones, or what.
As of yesterday she has not been doing well. She has a rash and hives and Dr. thinks it is due to thyroid med (methiminzole). He gave us predinozone and zyrtec to help with itchy feeling and rashes and told us to stop thyroid med. He stills wants her on the propornolol for now and will probably switch her to ptu next week.
I am not happy and very worried. She was doing great with meds for about 2 weeks and then now………….oooooooooooooo…
Signed
Seriously Worried MomMy daughter has her blood work done every 4-7 days if the TSH and T4 levels are fluctuating or extremely far from the accepted range. She is now every 30 days because the levels are not fluctuating at the moment. However we notice if she gets a cold or other illnes her levels fluctuate and we are back at every 4-7 days. She takes methamazol 20g every day. The dose is determined by the thyroid hormone levels. Her endocrinologist watches her very carefully. We
e-mail him on a weakly basis. We report her pulse rate twice per day, her attention levels in school, morning body temperature. The clinic she goes to also takes pre-emptive measures to prevent any illness.She sees the cardiologist every 90 days, but he also gets a weakly report about her pulse rates. She is unable to participate in gym if her pulse rate is over 100/minute for extended periods of time. The docs do worry about the meds affecting her liver functions. Her liver enzymes are tested every 90 days and within 24 hours of a fever if no other cause is observed (i.e. strep throat).
Having a child with Grave’s Disease does affect the entire family. We take it day by day.
mauiMaui,
Why does your daughter see a cardiologist? The doctor never expressed concern about her seeing one. He did say to go to an opthiomologit. To have her eyes checked. Becasue your child is so young how else does this affect her and your family? Any words of advice is welcomed! -
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