Wow. Thanks for all your advice and support. I wasn't expecting that and I seriously appreciate it. Ok, here is our story: Jared was sick all his life, colds, coughing, bronchitis, infections failure to put on weight, constipation.,his poops were like rabbit pellets. He loved salt so much, he drank pickle juice. He would barely be well enough for pre-school for one day, then home the rest of the week. It continued like that until he was 5 . His pediatrician sucked. I would take him in with green goo coming out his eyes and he wouldn't even give him antibiotics. I took him to an allergist to get tested for allergies, he was positive for dust and pollen. That, I was told, is not uncommon. We were sent for chest x-rays and his lungs were completely clouded/shadowed. The allergist put him on antibiotics for 1 month and the next X-rays showed 0 improvement. This Dr. Sent us for a sweat test which came back 63. I had no clue what a sweat test or CF was. This was all in Palm Springs, CA. Since Desert Hospital is not a credited CF center, we were sent to CHOC. (Children's Hospital of Orange County) . Their sweats came back also at 62 & 63. We chose Loma Linda for our CF Hospital, they are also CF and were 1 hr. from our home. He, at that time wasn't even on the BMI chart. His weight was 39lbs. He was immediately hospitalized for failure to thrive, a Tune-up, bronchoscope, tests, etc. he was there for two weeks and put on a 2 lbs. His treatments included: Pulmozine, xopenex, albu terror, Pulmozine, Creon, Nasonex, hypertonic saline, and two to three, 20min vest sessions, sometimes 4 a day. A couple more hospitalizations and a year later I got his weight up to 52lbs. Then we moved to CT. His new hospital became CCMC. (Connecticut Children's Medical Center. Three years later of pretty much roller coaster health, he was middle of the road enough to be eligible for a clinical study. It could have been Kalydico. He had to know his genetic mutations, so we were tested and none came back. Then we got the $3,000. Full screen ambry genetics test and no mutations. His Pulminologist sent him for a sweat test at Yale and it came back a 10! We were sent on 2 more separate sweat tests, because apparently your sweat test number doesnt change, I was told. It was a 10 & 11. He was pulled off all his treatments cold turkey, (talk about nerves) and we continent CF clinic for one more year and all his tests were normal. (pft's, chest X-rays, sputum cultures, fecal fat, and no harbored infections. It was then we wer told we didn't need to come anymore because there was nothing they could do for him! He was a healthy kid, no more CF. We believe in miracles. He sees aPediatrition when he gets sick. He gets allergies pretty bad out here all spring and even now still. Last week he weighed 95 lbs (75 percentile) and is 5' (95th percentile). He is 11 . So.......what do you all think???
