I know this may not interest some, but since I process things through writing, I thought I’d update my “mind” on Cyan’s doctor visit. Cyan has Grave’s disease and January is thyroid awareness month. Grave’s is an autoimmune disease; her thyroid (the butterfly shaped gland near the base of your throat) is hyperactive. Since the parenting gig doesn’t come with a manual, so much of what we do is learn as we go. And this is one of the many things that we’ve learned about and will continue to. A bit of history:
Today we saw the nurse practitioner at Carrie Tingley’s Pediatric Endocrinology Clinic. I didn’t get her name, but I wish I had, because she was very helpful. She took the time to ask us if we understood Grave’s disease and explained it in more detail than the doctor did at our last couple visits. She explained the relationship between the pituitary gland and the thyroid, and the thyroid suppression hormone (TSH) and antibodies (T3 and T4). Cyan’s thyroid is still enlarged. It probably won’t get smaller, but it will not get bigger since we are treating it. I hope we can see this NP again.
The current plan is to keep Cyan on methimazole (MMI) for probably two more years. Depending on how her labs come out, she may go on a lower dose. After two to three years, Cyan will be taken off of MMI and monitored to see if her thyroiditis has gone into remission. They will also take a look at her white blood count and liver functions to keep an eye on how she is processing the medication and make sure there are no adverse effects, in which case we could look at radiation or surgery.
As Dr. Georges had told us, it could come back, particularly during times of high stress for women. One new thing we learned today is that sometimes pregnancy can cause the antibodies to increase and can pass from the mother to the baby. If Cyan becomes pregnant, she will need to let her OB know so the baby can be monitored and treated postpartum if necessary. Crazy to think about, but it’s good for us to know since it’s now part of her medical history.
The NP said surgery is not usually something we’d consider with someone as young as Cyan. There is the potential that she will take MMI for periods throughout her life, but the goal is to get it to the lowest dose possible. Some people opt for radiation or surgery, in which case you have to take a synthetic thyroid (one pill versus two pills). Cyan is really good about taking her pills (once in the morning and once at night) so I doubt this will be a factor.
She had blood drawn today. They brought in a very nice lady named Alicia who is a Child Life Specialist. She played with Cyan and we were all laughing so much as Cyan popped balloons on Alicia’s iPad and “scared” her. The nurses drew blood while Cyan sat on my lap. She was frightened when she saw the “needle” and she cried, but overall she was a very good patient. Because she was so good, Alicia took her down to her office and let her pick any toy she wanted from an awesomely stocked toy cabinet. Allan and I thought she might take the two sisters from Frozen, but she opted for a cheerleader doll that gives a cheer.
They also weighed and measured her. I believe she was 36 pounds and 3’4″ tall. She is in the 75th percentile and growing well so that is a good sign that the Grave’s is not impacting her growth. Her blood pressure and heart rate were good. The NP will call me when the results are in to tell us when we should test again, if we need to adjust her dosage down, and when her next visit is. Other than the occasional blood draw, we’re lucky that this condition doesn’t really affect our girl too much at this point. We are part of a Facebook group and some kids have more trouble.
Afterward, we went to “Old McDonald” for breakfast. She wanted me to climb with her so that’s just what I did. We climbed way up high in the play area and went down the slide. She said she wanted to leave her bandage on forever and for me not to tell anyone about it. She forgot about it when she was climbing through the play place, but she nursed her arm a few other times throughout the day. We talked about how she will have to have blood drawn to see if the medicine is working to take care of her body. We talked about blood and needles. She is scared, but also so very brave. We are so proud of her and love her so much. It’s never easy to see your children upset, but she is such an amazingly strong girl, there’s no reason I can’t be too. I almost cried from laughing when Cyan and Alicia were playing. And I almost cried after the visit because I know the labs are scary for her. But she always shows me how big her brave is, so I’ve gotta show mine.
And I think I’ll let her pick something from Etsy to remind us how brave she is:)