Parents of Children Under 18 with IPF or chILD
Hi – I am looking to connect with other parents who have children diagnosed with IPF or chILD.
My son is 13 and recently diagnosed on 4/23/19 with chILD and Surfactant Protein Deficiency; however, there is usually a genetic marker and they haven’t found one yet, even with extensive genetic testing. So, his type is unknown. He is on oxygen 24/7 and needs a wheelchair for mobility outside of the house.
Currently, I am looking for activities to entertain him this summer. He usually goes to overnight camp, but it is not wheelchair friendly and the heat/humidity makes is oxygen level drop. We also used to have season passes to Six Flags, but recently had to get a refund because they don’t allow oxygen on the rides.
He is having a hard time accepting this way of “living” and doesn’t want to be seen with oxygen or in a wheelchair. Does anyone have any suggestions for motivating him to do anything and oxygen friendly activities? I’m thinking archery, fishing or even golf if he takes a cart. Any exertion makes his oxygen level drop, but it does bounce back up.
I am also nervous about flying anywhere. I don’t know how much oxygen he would need. He had one altitude test before his biopsy/bronchoscopy and failed miserably. The surgery worsened his condition, so we probably have to repeat the test.
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