cherishthree
New member
newly diagnosed 11 year old son? Before diagnosis he was being treated by asthma and allergy for what they called SEVERE ASTHMA from Birth really to 10 years old!!. And we started to accept when they told us that he may never get over a 80% again for fev1. But now that we know it is actually Cystic Fibrosis and since there true diagnosis last month in the beging of May(They are both getting meds they need now polmozyme albuteral, vest treatments, etc,) his little sister Hannah also just diagnosed with Cf was hospitalized for a cf exacerbation for over 2 weeks for Iv treatment for Staph Aureus. They so far have only done one PFT on Chris since he has been at this clinic it was 80%( his highest ever!!). he has over 20 hospitlatins under his belt for asthma so you know that was all steroid treatments and allergy meds unneeded. When we go to clinic at the end of the month should I ask them to do a tune up on him before the school year sets in? They both are sopossed ( is that a word?) to have mild CF and we would like to keep it that way but this late in the game we feel way out in left feild with such misdirection any words of advice would be a MAJOR help. We have complete faith in our new care at ST. Christphers Hospital but would also like not to be unheard as far as there treament goes!! Would that seem bizarre for me to ask for them to give him a tune up ? Not saying they do not know their jobs but at this stage I want him to have 100% if that is ok? Thanks Kathy new here with Hannah just turned 7 with late diagnosis of Cf and Christopher 11 with late diagnosis of Cf