The last day and a half has been another valley on the roller coaster ride, literally and figuratively. The literal ride(s) occurred at the Eastern States Exposition, “The Big E,” in Springfield. We just got home and we’re beat so this post may be brief unless I get a second wind.
And the figurative roller coaster…Norah had been back on her thyroid medication for almost 3 weeks, and so far the rash had not reappeared. She woke up with a cold yesterday and we have to watch her carefully if she gets a fever because one of the side effects of the medicine can be a reduced white blood count. I was in the middle of typing an email to Norah’s doctor about that, when I looked at Norah and saw some tiny hives under her eyes and on her neck. I was SO disappointed because I really wanted her to be able to continue on the medication so we didn’t have to think about Plan B right now.
When I told Dr. Fleisch about the hives she was really disappointed too, and told me not to give Norah the evening dose of her medication. Within a half hour the hives were no longer visible, so I wasn’t sure what to think. I talked to Dr. Fleisch in the afternoon, and she had spoken to the thyroid expert at Childrens. We all agreed that I would watch for hives through the day today, and discontinue the medication permanently if I saw even one spot.
Meanwhile, I was looking around on the internet to find answers to all of my questions, and I read a clinical study called, Adverse Events Associated with Methimazole Therapy of Graves’ Disease in Children. This study mentioned hives as a “minor side effect” of the medication, but didn’t detail what was done about the hives during the study – whether the medication was discontinued or not. At about 1 a.m. I emailed the doctors who ran the study on the off-chance that they would answer my questions. I had also emailed Elaine Moore, the author of Graves Disease, a Practical Guide, as well as Linda Pesonen, a blogger who writes about her own experiences with thyroid disease and has a wealth of resources on her blog.
By this morning, I had email responses from the doctor, the author, and the blogger. I am amazed that such a huge amount of information is available on the internet, and touched that I can reach out to complete strangers and have them care enough to respond. The doctor emailed me at 6:30 a.m. and asked me to call his cell phone. Wow.
Before I go on, let me say that this doctor is a total rock star when it comes to pediatric thyroid disease. He is Dr. Scott Rivkees, the director of one of the few centers in the U.S. currently dedicated to the treatment of pediatric thyroid problems – the Pediatric Thyroid Center at the Yale-New Haven Children’s Hospital. I’ve done some reading about him today and he is a true expert in this field.
So, I pulled out all of Norah’s paperwork and called his cell phone. He was extremely nice, no indication of the ego you might expect from someone with his qualifications and abilities. He spent an hour on the phone with me, going over Norah’s history, the family health history, and all of the treatments, side effects, and risks. In his opinion, Norah is definitely allergic to methimazole, and the only option for her is surgery to remove her thyroid. I began my conversation with him completely unprepared to take this step, and ended the call feeling comfortable that it was the right thing to do.
He explained what his practice does to reduce each of the risks associated with the surgery, and described the team approach they use in the operating room – a pediatric surgeon AND an experienced endocrine surgeon working together. He said that they see at least one kid a month who is in exactly the position Norah is in currently – very young, with Graves Disease, and unable to take methimazole. They conduct 2-4 of these operations 1 or 2 days/month, and people come from all over the country and even overseas to have the surgery done. The two surgeons, Dr. Christopher Breuer and Dr. Robert Udelsman, have conducted 50-60 of these surgeries in the last two years.
Dr. Rivkees asked if he could see Norah before he heads to a conference in Prague on Tuesday (he just got back from speaking at a conference on Graves Disease in Paris yesterday), and he is meeting us tomorrow (Sunday!) at 10 a.m. The center isn’t open so we have instructions to call his cell phone from the lobby and he’ll meet us and have Security let us into the exam area.
Norah will likely have surgery on October 7th. I’m nervous about it but I feel like it’s our only option and she will have the Dream Team in the operating room with her. The likelihood of her disease going into remission is very slim, and she could get extremely sick in the meantime. Even if she had been able to continue the methimazole, there’s a good chance we’d be making this decision a couple of years from now anyway. I spoke to Dr. Fleisch today and she feels like this is the right thing to do too. She will continue to be Norah’s endocrinologist after the surgery, similar to if we had the surgery at Childrens in Boston.
That’s all I’ve got for now. We’re off to New Haven early in the a.m.
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