Recent content by Justinsmama

Thank you everyone. I spoke with the nurse and was told that my CT scan did not show any pneumonia or scarring that was consistent with CF. It did, however, show inflammation. Does anyone have any idea what that means? The doctor is very busy and I guess not going to call me until she see...

I had my PFT's done today, along with a CT scan. Waiting to reschedule the rest of tests because my son was sick today. Here they are. Any thoughts would be appreciated FVC 85 91 FEV1 67 74 FEV1/FVC 63 65 25/75 37 43 Lung Volumes: TLC 105 VC...

Hi. Had my CF appointment last Friday. I go this Tues for testing: high def CT, sweat, and breathing tests. Also full sequencing and 18 blood tests. Very thorough. Hope to have some answers. She thinks it could be CF but wants to rule out auto-immune problems. She also thinks my older...

Hi, My son has a mutation (F1052V) that gives a negative sweat test. He was originally tested because of PI. At 7 he developed lung issues (4 pneumonias). Genetics just confirmed this year, after being diagnosed two and a half years ago on clinical. Second mutation was re-classified this...

Thank you for the input and support. I am afraid of having problems myself and having to take care of Justin. I see the adult CF center in two weeks. hope to feel better soon.

Hi, My 9 year old son is diagnosed with CF. I have an 11 year old that is just a carrier (several poly's but still carrier). Here is where my question comes in to those that were diagnosed as adults. I believe even a few were diagnosed after their children. I have had a cough for almost 2...

Hi, My son was only recently genetically confirmed with CF. We were in the same spot as your child. When he was first tested two years ago, he had one mutation, three poly's and something with 7t/11t. One of his poly's is now considered disease causing. Justin's first fecal elastase test was...

Hi, My son was only recently genetically confirmed with CF. We were in the same spot as your child. When he was first tested two years ago, he had one mutation, three poly's and something with 7t/11t. One of his poly's is now considered disease causing. Justin's first fecal elastase test was...

We passed the sweat test and only had one disease causing and double 7t (something or other) and three polys of unknown significance until this Feb when one of the "unknown" was reclassified as disease causing. He had been diagnosed at Hopkins off of the 1 mutation and clinical. Now we are...

Partial blockage of the bowel or something with the pancrease? Justin's was a bowel obstruction in June. What did they do for the obstruction?

Hi, My 9 1/2 year old son has had GI issues since birth. He is PI and on Creon. He also suffers from bacterial overgrowth which he does a 10 on 4 off schedule of Flagyl. Also on Prevacid. He has had increased nausea almost every time he eats (within 15-30 minutes), and several bouts of pain...

Hi, my son was diagnosed at 7 and I can completely relate. He was too young to really understand the consequences. He is now 9 1/2 and it can still be a battle (more all the pills). Maybe you could try taking him shopping and choosing a couple of fun things (legos, whatever) and it can be...

I just want to share that after 2 years of minor questioning (my part as well as a couple of the doctors - not CF) my 9 year old son is genetically confirmed. Two and a half years ago we were known to have 1 mutation, 3 poly's, double 7t and have passed the sweat test. Clinically he showed...

We left CHOP a couple of years ago because my son was difficult to diagnose (passed sweat test and only 1 mutation at the time) and went to Hopkins after the first of a string of 4 pneumonias where his doctor knew the mutation (had another patient with it) and diagnosed him without genetics. He...

Thank you everyone. I have not posted in several months. We got on a schedule of 10 days on and 4 off. Not sure why Justin is still has so much nausea. He did an in-patient clean out for a partial obstruction which ruled out constipation being the cause. He is lactose intolerant but was...