3 year old with graves

I’ve worked in hospitals for years and years. The main things that need to happen if she has a TT, total thyroidectomy, is she should be at a Children’s Hospital, with a pediatric surgeon, and an anesthesiologist who is skilled and experienced giving kids anesthesia. By being at a Chidren’s hospital, you can count on all care givers and docs, nurses and other health care folks, having experience and training with kids, AND they want to, and chose to work with kids. Many kids, including 8 lb babies have a general anesthesia if surgical procedures are needed.

With all due respect to you endo, I heartily disagree with his comment about waiting until ages 8-10 for surgery. He is not a surgeon, he is not a pediatric ophthalmologist, or any kind of eye doc. “Waiting,” if your daughter has TED, thyroid eye disease, and does have optic nerve atrophy, will result in permanent blindness that cannot be reversed or fixed.

Can you get to a pediatric eye doc? well, I just re-read that she was seen by a thyroid eye disease specialist, I did not now there was such a thing. But good that this doc is familiar with TED. One question I have, is how about a CT scan, that usually shows the results needed, along with other vision tests designed for kids. Rather than an MRI? You can certainly ask the question. An MRI would be much more frightening, for it is long series of very loud noises. She most likely would need to be sedated for that, for sure.
If you can get to a peds eye doc, do it.
Do write again. I know my suggestions mean more research, more phone calls. But especially she needs a good eye exam to determine if she does have optic nerve atrophy. That can’ wait.
shirley

Hello – Agree with Shirley…this is not something I’ve seen associated with Graves’, although of course we are fellow patients here.

Sending {{{hugs}}} to you and your family! So sorry that your little one is going through this.

Hello – This will vary by patient, but the majority of the time, a relapse will occur during the first 90 days. And for someone with high antibodies, relapse is *extremely* likely.

We’re obviously fellow patients here, not doctors, but personally, I would go back to the doctor and ask for the rationale for withdrawing your daughter’s meds now. Surgery is riskier if the patients is hyperthyroid. If that is the path that you feel is right for your daughter, I’m not understanding why they wouldn’t keep her on the meds and schedule surgery while her thyroid levels are normal.

Maybe they just want to give this one last chance before proceeding with a surgery that cannot be reversed. But I would ask about the doctor’s plans if your daughter does relapse. Would they put her back on the meds and then wait to do surgery? Keep in mind that side effects with anti-thyroid meds most commonly occur during the first 60-90 days. And if you stop the meds and restart, that period starts over. In other words, if your daughter stops the meds and then starts them again, she is at a much higher risk for side effects.

Do you have the option of getting a second opinion? Or maybe you can go ahead and schedule a consultation with a surgeon now to get his/her opinion on the process.

Hello – Sorry to hear that your daughter has relapsed. The risk of side effects is highest during the first 90 days of starting *or* re-starting the meds. So you will definitely want to keep an eye out for signs that might indicate issues with the liver (fever, loss of appetite, nausea, vomiting, tiredness, itchiness, dark colored urine, yellowing of the skin or eyes) or white blood cells (sore throat with fever, mouth ulcers).

I’m really not familiar with full block & replace being used in children, where the physician prescribes large doses of Anti-Thyroid Drugs to shut down thyroid production completely, plus replacement hormone to normalize thyroid hormone levels. The risk with B&R is that you are using much higher doses of the anti-thyroid meds, which increases the risk of side effects.

What is more common in children is prescribing a consistent dose of anti-thyroid meds, and then adding some replacement hormone as needed to prevent hypothyroidism.

A second opinion might also be helpful as you make this difficult decision for your daughter.

If you haven’t already, definitely check out the videos on the GDATF’s YouTube channel on Graves’ and children:

(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).

GDATF Videos – Check out the ones from Dr. Michael Gottschalk and Dr. Scott Rivkees:

https://www.youtube.com/user/GravesAndThyroid/videos

GDATF Playlists – Videos from seminar on Graves’ & kids co-hosted by Children’s Hospital of Philadelphia:

Hello – I have never heard of a bone marrow issue with anti-thyroid meds. You might ask to see if there is a specific study that the doctor has seen that I have not. Certainly, though, it’s worth meeting the additional specialists to learn about the pros and cons of RAI and surgery vs. continuing to stay on the medication.

I would NOT try any sort of herbal therapy without letting your daughter’s doctor know exactly which supplements she is taking, as there are some that can actually make hyperthyroidism worse. And I would *definitely* not recommend discontinuing the meds and pursing any sort of alternative type of therapy.

Wishing you and your family all the best!

Receiving conflicting advice does not make it easy for you to choose the best treatment for your daughter. You need more information on the non-curative bone marrow problems which anti thyroid drugs could cause.
Also how urgent is it that you chose for your daughter a definitive treatment of RAI or surgery? It is good that you are at least able to look into those two treatments by speaking to a surgeon and radiologist.
There is no evidence that herbs are effective for Graves.’ It definitely should not be a replacement for the standard treatments you are considering. Before you consider giving your daughter herbs you should check with her doctor. The risks for herbs are not known. One of the risks you mentioned might be interference with thyroid meds.
Do you need yet another opinion to weigh all three options? It is important that the doctor that is giving you advice is knowledgeable about your daughter—what unique factors need to be considered in her case?
My words are just an echo of what others here have already said. I hope at least it helps to reinforce the direction of your research.

I wish you the very best.

Hello again,
You already have been told about Dr. Scott Rivkees’ videos
Here is the link to one of his videos
https://www.youtube.com/watch?v=-HttLLtRg7s
— entitled Treatment and monitoring of Childhood Graves’ Disease. What a parent should know.
Rivkees ran the Pediatric Thyroid Center at Yale—the first center of its kind in this country.
If you go to his video you will be able to get on the screen his email address for Yale and for Florida where he is now. Using his email address you could email him your questions and concerns.

Let us know your progress when you can.

I wish you and your family the very best.