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That small portion of the post was only directed to you to make clear that I followed what your wise direction typically is, in making sure that the doctor was a certified CF doctor. My point was not that a doctor made a bad diagnosis, but that I understand being a parent of a small child that...

Hi, There is a science fair project from an amazing boy - Fifteen-year-old Rahi Punjabi has had an exciting year. His research on the efficacy of garlic in reducing bacterial infection in patients with cystic fibrosis won him first-place honors at the Massachusetts State High School Science &...

Hi, Your story sounds so familiar. My son Justin had a lot of issues related to laryngomalacia (2 surgeries by 12 weeks), apnea, SEVERE reflux (shut down respiratory system - turned blue), and bradycardia as an infant. By 18 months developed asthma, and 21 had eosinophilic esophagitis. I...

Thank you so much, I did not understand the dup/del before this. My last question (at least for now) is, since F1052V is usually associated with mild presentation and pancreatic sufficiency, we can expect that his other mutation is what causes his PI. His baseline for lung function is around...

Hi, Justin was diagnosed last Feb. He has one known F1052V. He is PI with a fecal elastase level of 25 when they stopped testing. He had severe malnutrition. They are suggesting testing for duplications/deleations to find his other mutation. Do you know what that means? Does it mean in...

I honestly think that the double 7t's that Justin have may play a part in his eventhough I was told it does not. We are always the exception to the rule.

Hi, We are in the same boat. My son is in 2nd grade and identified as G&T but without a GIEP (we just agreed on Friday) because of cluster classes and high enrichment. We too are given a hard time about the amount of time he misses (only about 8 this year as opposed to 30 plus last year)...

I have an 8 year old son that we had naturally. I wouldn't matter to us how we got him, just that we did. As far as any child goes, you get what you get and you deal with it. Justin taught us a lesson I would like to share, we had our hamster at the vet on New Years day and I knew we were...

No suggestions but I definately feel your frustration. I never quite know who to call for my 8 year old son. Pulmo side is better than GI, don't seem to get any answers there from anyone. GI said to not call about his nausea anymore, just call ped.

Hi, This is our first full cold/flu season since my 8 year old son's diagnosis last Feb. Last year he had one pneumonia after the other between Feb and April (3 plus stuff on bronch we had to treat). He can not get a flu shot because of egg allergy, so I know to call the CF clinic ASAP if he...

Hi, My 8 year old son, Justin, started with Flovent at 6. He quickly moved to Symbicort 80 and then 160. We now use the Symbicort 80 as maintenance and 160 as soon as he has a cold or flair. We were told that if he has to stay on the 160 long-term, it could cause his height to be 1/2 inch...

My 8 year old son has The Vest from Hill Rom. It is new as he got it last April. The reason we went with this one is that he gets his infections in his lower lobes of his lungs and the vest is longer and easier to target this area. It has made ahuge difference for us. He had 4 lung...

Hi, My 8 year old son has been having pain and nausea for several months now. He is pancreatic insufficient and takes Creon. Because of complaints of pain and nausea, he had an MRCP (without contrast) done yesterday. I reveiced the report today (before hearing from the doctor). Everything...

Thank you all so much. Bill, his amylase level was 50 about a month ago. He was having the problem then. I am not sure if that rules out all problems with the pancreas such as problems with the ducts or long term pancreatitis? Jana, that does sound like what he is going through. He is also...

Hi, My 8 year old son Justin was diagnosed last February. He is pancreatic insufficient, with his last fecal elastase numbers being 25, which is when they stopped testing him. He is on Creon. He started with nausea and pain in his upper mid abdomon (mostly left side) on and off since August...

We did it and I am so glad that we did. It was one less thing to worry about. Justin had 2 surgies to open his airways by 3 months, had apnea, bradycardia, 02 dropps and was on a pulsox and apnea monitor so not having to worry about somethings was a good thing.

Hi, We are new to this too. My son, 8 years old has CF but they have only identified 1 gene. The other could be a duplication/deleation or could be in a part of the gene that is not currently tested or a mutation not know. At our first CF Clinic we were treated "as if" on pancreatic...

Hi, My darling little 8 year old boy was just diagnosed with lyme's disease on top of CF. It has been a bad year for us. It anyone has any experience with CF and lyme's, please let me know. We are unsure how far the lyme's disease has progressed. The screenings were positive, but the...

Thanks, I dcided to you I hope you dance. For us, it I think it was the perfect choice. Justin has danced (jazz, tap and ballet) since he was 2 years old (2nd year in the nutcracker) and the focus on hope. I appreciate everyone's input. I was not sure Justin would like the song, but he...

Hi, I am making a video of my beautiful son Justin (just turned 8) for the CF Gala as I/my husband are the bid speakers. Any suggestions on a song? I was thinking "I hope you dance" because I have always read the book with the words to him as well as he has been a ballet, tap and jazz dancer...