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Bring down the dosage of medication?

My son had Asthmatic Bronchitis for 8 years (since the age of 2 years) and he was constantly on inhalers and other high steroid medication. In spite of this, he would get episodes of breathlessness and cough almost every day. He would be well for barely 15 days in 6 months. Doctors said it was very disturbing to see such a small child suffering like this with Asthma. He had his blood samples checked every time after asthma affects him. Now they decided to increase the dosage and keep him on higher steroid content medication. The nights are a horror for us. We got cpap masks at least to make sure he gets good sleep. Now that he sleeps well, Can we avoid medication at night? at least bring down the dosage?

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  • Melissa G

    Hi Kevin! Welcome to AAFA! 

    I am very sorry to hear how your son has struggled for so long! Is he being seen by a pediatric pulmonologist? What do they say about the medication? Did the drs prescribe the cpap machine?

  • Shea

    Hi KevinJohnson, welcome to AAFA! 

    I am a mom and asthmatic (allergic asthma related to a chronic allergic disease I developed at age 28 called Churg-Strauss Syndrome), and I have a 7 year old with food allergies and excema. 

    I can identify with wanting to be on less steroids and findind difficulty staying stable as you lower. For myself, trying to come down too fast would just lead to more flares and bouncing up high again– and that is no fun physically or emotionally.

    I am now on a maintenence dose of 20 mg a day of prednisone, and I use an inhaled steroid and albuterol 2 times a day regularly, and tgen if I need to, I can use in nebulizer or up to 4x day as needed. I found that finding that maintenece dose– for me 20mg– and patiently staying on it while I worked on getting my breathing under control rather than keep lowering before I am ready– really helped me.

    One of the ways I note that my breathing is under control is one you mentioned: being able to sleep through the night and not waking up wheezing badly or having an attack.

    That is a good sign and one you should definitely mention to your doctor. Other signs for me are bloodwork in a normal range and other pulmonary function tests my specialist run in office such as spirometry.

    When I do lower meds, I definitely talk to the doctor beforehand and get labs and a pulmonary function test to get an objective view of where I am at and to have on record to look at and relate to later (so if I try to lower by 1mg and feel worse and go back to my doctor I can see if my PFT has also gotten worse). It can be a tricky dance lowering medicines. Sometimes when I lower my oral prednisone I will need to use my inhalers or nebs more frequently and be more tired for a while as I adjust to the new dose, so I talk to my doctor about that and how often I can use inhalers and or nebs. 

    Since you are dealing with your son and not yourself it can be even harder to do this dance, I am sure it will involve communication with him as well as objective tests– some that you can do and some that his doctors can do at appointments– other members have mentioned some on previous threads that they keep track of their numbers at home like peak flow monitoring, etc– hopefully they can chime in more about that.

    I know I didnt totally answer your question, as it is tough to know when its ok to lower, but I hope I gave you sone info about things that will help answer it! 

     

  • Melissa G

    Kevin, how is your son doing? Has your son been having problems with the weather changes?