Pulmonologist

When I started typing the post last night, I actually had a point, but I rambled on and forgot all about it. The reason I was so tired was actually what I had MEANT to write about. We left to drive to Bethesda yesterday morning at 9:45, and we got back home after 2:00.

Let me back up a bit before I actually talk about the appointment. Caleb (almost 8) is our one child with food allergies (milk, peanuts, walnuts, and pecans) and asthma. He has been taking Singulair since he was almost 1, and he also takes Flonase and Zyrtec. He has Albuterol and Flovent for his puffer, but he only uses that when he is wheezing, and he has hardly needed that the past year. He basically has 2 bad seasons (he has a lot of seasonal and environmental allergies)--March through May, and August through the first frost. His wheezing has been very well-controlled these past few years, and he really has hardly used his puffer. He did have one incident on New Year's Day where we had to take him to the ER because he couldn't breathe, but they decided he had pneumonia and put him on antibiotics as well as doing breathing treatments.

Over the past year, however, I have noticed some alarming personality changes in Caleb. He has always been such a happy little boy, and he has just become so very whiny and emotionally fragile. Everything has become a big deal, with lots of tears and drama. Also, he has just lost some zest for life or something. Everything is "blah". He is rarely as enthusiastic about anything like he used to be. It's not that he has a bad attitude neccessarily; it's more that he's just not excited about it. He's not depressed or anything, but I would describe him as glum, more and more. Also, he ahs had some physical complaints--his tummy hurts sometimes, and some mornings he complains about how his muscles hurt and are shaky. It's weird, and it doesn't seem to be a low blood sugar thing.

My best friend Amy's son also has allergies and has taken Singulair for a long time. This past year she also had some similar concerns about her son's behavior and personality, as well as some physical problems, and after doing some research, she took him off Singulair. His symptoms have dramatically improved. I did some reading as well, and there was a thread on the Well-Trained Mind Board dealing with people whose children had problems with Singulair. So I had been thinking that I would take Caleb off it maybe in October. I made an appointment back in June I think to try to get a referral to the allergy clinic, since it's been over a year since he's been seen there, but the doctor I saw didn't think I needed one, and he blew off my concerns about the Singulair. I was going to make an appointment with another doctor, but then we got busy traveling, having company, traveling some more, etc. . . . and it never happened.

Imagine my surprise when a few weeks ago someone from Bethesda called to schedule an appointment for Caleb to be seen to check his lung function! The appointment was yesterday, and it started with him blowing into various tubes and machines, something he has never done, even though he's been diagnosed with asthma since he was maybe 2. The guy running the test told us his lung function was very good, and he also gave us a new spacer and told us that Caleb should always use it, even as an adult, because when you spray an inhaler directly into your mouth, it goes into a lot of surrounding tissues, but not as much gets breathed into your lungs. Interesting!

Then we got to see the doctor, an actual pulmonologist. She spent a very long time with us, asking a lot of detailed questions. It turns out that when Caleb went to the ER on New Year's Day, the doctor put in his records that he wasn't sure if his symptoms were all caused by pneumonia, or if his asthma had contributed, so that had gotten him red-flagged to be put on this special asthma list and be checked up on now. She said that it was unclear whether Caleb had "intermittent" asthma, or if he had "persistant" asthma that was just very well-controlled, since he has never been off his medicine. She wants me to try taking him off his meds in November, and then come back in to see her so she can test his lung function and see what is actually happening in there without anything.

I told her all my concerns about Singulair. She told me that the studies have not found any relationship between Singulair and suicide, and that most people reporting side effects like personality changes have reported them after a short period of time on the drug. But she said that there really jsut hasn't been enough studies done, and if I have noticed stuff, then it is a good idea to see what happens off the meds. Also, she said that Singulair is no longer the first-line drug recommended for persistent asthma. Most kids take an inhaled steroid like Flovent daily, which Caleb has never done. I asked her about the side effects of steroids, and she said that they were less than with Singulair, and very rare. So if he still needs something, then maybe we'll go with Flovent instead of Singulair.

So it was a very good appointment, and she was so nice and helpful. She also said that if we did move to Guam, she would make sure we have a 3-month supply of all his medicines to bridge the gap of getting over there and getting settled in before having to see a doctor there for new prescriptions. Wow, it's so amazing when the Lord just works out something like this for us! I still can't believe Bethesda called US to make this appointment! An answer to prayer--at Bible study last night, I was flipping through my little prayer request notebook, and I noticed I had asked for prayer for wisdom about what to do for Caleb on August 21, about a week before she called!