Over the last two to three weeks, NHL’s allergies have been acting up. At one point he actually had his first ever asthma attack during the night. We pulled out the nebulizer and within minutes he was breathing easier and no longer wheezing. After several days of symptoms getting worse, we opted to take him in to see the PA at the ENT/Allergy office that we went to. She diagnosed NHL with allergic asthma and gave us a bunch of new items to try to get things under control. We were not to start the one medicine until we saw how he did with the other. Three days later things were worse, especially behavior wise at school. The PA told us to immediately begin the new medicine.
The new medication was the Asmanex Twisthaler. If you have never seen this before it is an interesting medication. The problem is that it is hard to inhale and teach a five year old to use. The pharmacist told us he was floored that a young child was given this and warned that often children get thrush from it. Lovely!
Last Friday NHL’s teachers were very concerned with his behavior. They directly related it to the recent allergy attack. I called the doctors office and asked for assistance since I was not sure if NHL was getting the Asmanex in properly. Nobody called me back. I made a return call and was asked to leave another voice message for the medical assistant to remind her to return my call. What?
After quite some time, the MA called me back. She was extremely snotty on the phone. When I tried to explain something to her she cut me off and told me "No need to tell me the history, I read his entire chat and know what is going on." Pretty cocky statement if you ask me. She went to try to get NHL an appointment to see the doctor, but he had no openings for several weeks. She came back to the phone and asked me the following question, "Has NHL tried Singulair?"
This was the wrong thing to say. I was too angry to yell, I simply cried because I felt like I was failing my child. I have seen NHL’s chart and know there is a huge section all about his adverse reaction to Singulair. She told me that she was going to talk to the doctor again to see if he wanted to fit in an emergency appointment or just switch things up and see us at the end of the month. Things were switched, but my mind was quite uneasy about everything that had happened.
I started to do research for pediatric allergists in the area. Our family doctor and the school nurse both recommended the same person. We received a referral from the doctor and I called the new office. They had an opening in less than a week. I immediately took that time. Next, I called the allergy/ENT office to get the items faxed to the new doctor. They sent something Friday morning to JL to sign and fax back to them. Monday morning I called the new office and they had nothing. I left a message at the allergy/ENT office and 24 hours later did not hear back and still nothing at the new office. The new allergist’s office suggested calling our family doctor to see if they had records that could be sent. Much to my horror, when they checked NHL’s file there were only two tiny notes from the allergy/ENT group. He had been a patient there for almost a year, been allergy tested and had a horrid reaction to a medication – yet nada! To make a long story short, I called to speak with the office manager to explain the three major issues that had cropped up over the past week. End product, she was very sorry and told me that the doctor was disgusted with what happened.
Yesterday was our appointment with the new doctor. It did not start off very well. He asked me to explain what has been going on. When I said that NHL’s allergies were acting up, he stopped me and said "Well, it is very rare that children under 7 have season allergies" Please picture me rolling my eyes. I have heard this before, so it was nothing new. Then he asked about how we have been treating NHL. I mentioned the previous medications. When I stated the adverse reaction to Singulair, he told me that the FDA and latest reports indicate that there is no connection with pediatric patients and changes. I looked him right in the eyes and said the following "I do not care what the report says, I KNOW what it did to my child!"
The subject was quickly changed and he got the point that I am observant and so are NHL’s teachers. We see changes and know what is going on with him. In the end we saw mostly eye-to-eye on NHL. A lot of this happened when we agreed that he was very nasal. He believes that NHL has bad rhinitis that is being caused by at least three things. Some are allergic, some illness related (virus and things from school), stress, and potentially his adnoids. He was upset that the other group was treating him the way they were (specifically the Twisthaler) and switched his medications after doing some breathing tests. We are back to using the nebulizer once daily, keeping up with the OTC antihistamine and watching things for the next month. We go back on St. Patricks Day and will talk about knocking the nebulizer to every other day.
I am glad that I did not leave after the first statements becuase I do believe that the doctor started to listen to me. He heard that I was not just some mother trying to medicate my child. That I am part of a group of people that have carefully watched my son and seen things that trigger him. With any luck this will be the start of some relief in breathing symptoms and behavior for my kindergarten kid.