Join Date: Jul 2005
Meds not working anymore (long)
Hi all, I am a long time lurker..and a lot of you have helped my daughter with all your advice, and I'm looking for some help now. Sorry this is so long.
My daughter- 10 yo has cough variant asthma, from her allergies. She has always had normal peak flows. It took a long time to get her diagnosed because of this. When she was first diagnosed after constantly coughing for what seemed like months, and several bouts with an itchy rash (which was misdiagnosed as scabies) she had a rast test that showed she was highly allergic to dust mites only. Nothing else. But she is super allergic to them. 200 times more than the average person. So we totally got her bedroom up to par with all the allergy stuff: new mattress, dust mite covers on everything, hepa air purifier, no rugs, Mielie vaccum. I even bought a front loading washing machine to wash her sheets in super hot water every week. We don't have central air, and have a window unit in her room, and have baseboard hot water heat.
Anyway, she went on prednisone for weeks, but that didn't really help her. When she started on Advair, that really did the trick. Unfortunately she also started breaking out in the horrible itchy rash again. But when we combined the Advair (500/50 twice a day) and Claritin, she finally got some relief. She was wonderful for a year, from 9/05-10/06. However, the last year has been horrible. She goes back and forth between the coughing attacks and a rash all over. It seems that the rash appears when the coughing subsides for a day or two. She rarely has both at the same time. After several rounds of prednisone last fall and winter, in 2/07 our pediatrician thought perhaps the Claritin wasn't working anymore, and we should try Allegra, he felt she needed to alternate her antihistamines to get better results. This worked for several months, and we alternated between Claritin and Allegra. But by the summer, we were needing to alternate every few weeks, and threw Zyrtec into the mix. We recently had her tested by an allergist to look into immunotherapy. Turns out she is allergic to a lot more than dust mites, although that is her worst allergy. She is also allergic to nickel, lanolin, grass pollen, tree pollen, ragweed, dogs, cats, rabbits, horse, cattle hair, and feathers. When we took her off the Zyrtec to be tested by the allergist, it was a terrilbe grass pollen and ragweed season here, so she has been having attacks for about 6 weeks. The day the pulmonologist put her on prednisone, she had coughed for 17 hours!
So my problem now is, she is needs to get her asthma under control to get the allergy shots. I just feel like none of her meds are working anymore, and that is never going to happen. She is normally on Advair 500 twice a day, Singulair, Flonase, Zyrtec. She has been on Prednisone for 14 days, 30 mg. I am waiting for a call from Pulmonologist to find out what to do next. Dust mite season (winter) will start here in New England soon. I think last time the Advair really helped her get out of a mess, but I don't know what they will do now. I think our pulmonologist is even stumped. He is mentioning Xolair, but she is too young and it will take forever to get approved. I don't even know if I want her on it, it scares me. I would take her off everything, but I think that she will then be coughing 15, 16 hours a day, which happened for a week last winter until the pediatrician switched the antihistamines. Any advice for us? I am trying to find someone, maybe at Children's in Boston to give us a second opinion, even though I trust and like our pulmonolgist. I had read a few post on somewhere about people taking an Allegra in the am, and a Zyrtec in the pm. Has anyone ever tried that? She coughs for hours every evening, and only falls alseep when exhausted, even with all the meds she is on.
Any advice/ideas would be appreciated. Thank you! We have seriously thought of moving, but that would be very difficult, practically impossilbe, as it would be for most people.