A couple of weeks ago, Bubs returned home from summer camp and was complaining of being very tired. I blamed it on a week away at camp. A few days later he had some puffiness in his face, which I attributed to seasonal allergies and had him resume taking Claritin. He continued with other complaints including difficulty catching his breath, decreased appetite, nausea, headaches, and ongoing fatigue. I thought, dehydration, seasonal allergies, too busy with activities, etc. I also noticed that his torso was getting thicker, for lack of better words. But I thought this 10 year old boy may be in the beginning stages of puberty. I even joked with him about becoming a man.
I tend to be on the "we don't need to go to the doctor until an arm is falling off" end of the spectrum. But when there was notable swelling in his entire body, I decided I should take him in.
We went to our office's walk-in clinic the next morning. When they weighed him, we found that he has gained 13 pounds in the last 4 months. That is a ton of weight for this skinny kid. We saw a nurse practitioner who spent a lot of time with us. I could tell she was concerned and didn't really know what to think. His physical exam seemed normal. Heart and lungs sounded good. Eyes, ears, nose, and throat looked clear. No tenderness to palpation in his tummy. She decided to order some labs to see if anything was off with his bloodwork.
This kid dreads anything with a needle. He calls anything involving a needle a shot, whether it is a vaccination or a blood draw. He loathes going to the allergist because he knows he will have to get a "shot." So now, on top of all of his other symptoms, he was experiencing anxiety too.
We were supposed to get the results the following morning, but I received no phone call that morning. Bubs' face and body looked even worse. I called and left messages asking for a phone call back. My mind was spinning thinking of all the different things that could be wrong. Heart failure, kidney failure, liver failure, cancer. If he had to be hospitalized, would they be able to feed him, or would I be able to bring in safe food for him? I was thinking they weren't calling me back because something was so skewed that they had to look further into what was going on. If everything had been normal, they would have called right away when they said they would. Finally, at the end of the day, the phone rang. (The delayed phone call had been because an additional test had been ordered to check for mono, which apparently takes longer than the standard testing they were doing.)
Diagnosis: Hypothyroidism. While this isn't a wonderful thing to have, I am so greatful it is something that is managebale with meds. We can handle this. Except the sample pills they gave us contain.....you guessed it.....MILK.
I always check for lactose monohydrate on pill bottles because this is commonly an inactive ingredient. I didn't know what to do. It was now after hours, and I wanted to start this medicine first thing in the morning as Bubs continued to swell up. I called the on-call nurse practitioner asking for a liquid form of Synthroid. She called around to several pharmacies, but none of them were able to make that compound. The pharmacy that she knew of that could make it was already closed for the evening. We just had to wait another day. I gave Bubs an ibuprofen hoping it would help with the inflammation, which it did. He looked better within an hour.
The following day the nurse practioner called me back saying they had decided to start Bubs on a gel capsule of levothyroxine called Tirosint. I was happy with this as I had been inundated with support and suggestions after posting a comment on Facebook asking for help from the food allergy community. Tirosint was a drug that several people had suggested as hypoallergenic, and it does not contain any milk.
He began the gel tabs two days ago. Now we wait to meet with an endocrinologist in a month. I told Bubs that he will get used to needles as he will have many blood draws in the near future.
Dealing with food allergies is something I have become accustomed to. But now having to navigate our way through a new chronic disease that involves daily meds which we have to check for his allergens is new territory. We will get through this together.