Search results

Hi everyone. My son is 17 and was just diagnosed with severe osteoporosis. I spoke with the cf clinic today and they have been speaking with his endocrinologist and nephrologist deciding the best way to proceed. my understanding is he will go back to see his endocrinologist and the plan will...

Hi everyone. My son is 17 with CF, PI, g tube. His vitamin d was low, but treated. He is very thin for his age and had a g tube placed a year ago. A CT scan was done prior to the tube being placed and it was noted that he had osteopenia(low bone density). The plan was to do a DEXA scan but...

Hi everyone. My son has CF and autism. His service dog Oscar is in a contest to be a super pet for a local company. For some reason my son wants his dog to win so bad. He is so excited about this. Please take one minute to click on the link and vote for Oscar our super star. In my eyes we are...

Hi everyone. My son has CF and autism. His service dog Oscar is in a contest to be a super pet for a local company. For some reason my son wants his dog to win so bad. He is so excited about this. Please take one minute to click on the link and vote for Oscar our super star. In my eyes we are...

Hi everyone. My son has CF and autism. His service dog Oscar is in a contest to be a super pet for a local company. For some reason my son wants his dog to win so bad. He is so excited about this. Please take one minute to click on the link and vote for Oscar our super star. In my eyes...

My son just recently after a lot of pain and blood in his urine, passed 2 kidney stones. I emailed his urologist who said that people with cf are at risk for developing them. This is something I did not know. We we just did a 24 hour urine collection and he is scheduled to meet with a...

Ok, I'm not sure if any of this will make sense, but here goes. Off and on my son has blue fingernails. His hands and feet are always cold. But when his nails are not blue, his nails remain completely white. I am not even able to do the capillary refill test on him(where you push down on one...

Hi, I was wondering if there are ways besides treatment compliance to improve Pft's. my sons have been dropping at each appointment but he is not culturing anything and has not been sick. Any suggestions are appreciated. Thank you, Janelle

Hi guys I had some question about my sons Fev1 numbers. He had a clinic appointment today that went well. The only thing he said that my sons Fev1 (I think that is it) has been dropping since last March. It has gone from 110 down to 80 now. He said his pft. line is right on top of the normal...

Anyone need to start insulin when doing continuous tube feeds. My son is having some blood sugar issues and we were told it could be from doing 16 hr a day tube feeds. Seeing an endo soon and wondering if anyone has experienced anything similar ad has any advice. Thanks, Janelle

My son has been sick for the last couple weeks he has a sinus infection. He is being treated with Omnicef. My mother n law who I take care of and my son is always with has copd and was just hospitalized with MRSA., in her lungs. Should I be concerned about my sons current infection or is it...

Hi, I have a 16 year old son who received a gj tube in Jan. I have been concerned that he may be having issues from time to time with his sugar levels. His gi just did a glucose level and hba1c this week and they were within normal range, glucose 82 and hba1c was 5. His doc. does want him to...

My son was scheduled for his gj tube placement at Children's Hospital. After the placement my son was moved upstairs and seemed ok. The next day, they began the feeds. My son has other special needs and seemed to be ok. That evening he began to complain of being full. I must say the nursing...

My son was scheduled for his gj tube placement at Children's Hospital. After the placement my son was moved upstairs and seemed ok. The next day, they began the feeds. My son has other special needs and seemed to be ok. That evening he began to complain of being full. I must say the nursing...

Hi everyone, well just found out my son defiantly has superior mesenteric artery syndrome(sma syndrome) and will have to have a gj tube. There is no way to do the g tube. I called to set up the consult and was told that this is a very involved procedure and will take 3 hours to complete. I...

Hi, my son has cf. I take care of my mother n law who has COPD and respiratory failure. She has been going down hill for over a week. She had to be put on a respirator She just had a sputum culture that tested positive for MRSA. I am very concerned for her and now so for my son. Should I...

HI, my son had a ct scan and it showed that he has superior mesenteric artery syndrome. He is having an upper gi to confirm if he definitely has it. I was wondering if anyone else has this and they could explain it to me. The gi doctor is difficult for me to understand. These tests are being...

Hi, my son almost 16 is getting either a g or gj tube soon. The gi says he will need to be on it 24 hrs a day. I am wondering if this will affect his appetite since he does eat orally also. I was also wondering from parents whose child does this type of feeding, how heavy is the feeding pump...

Hi, my son is 15 with cf ( will be 16 in 2 weeks) and has autism. He is still having a hard time gaining weight (he currently weighs 69 lbs) and his cf doctor sent us to see a gi that specializes in cf(both from Childrens Hospital of Pittsburgh) to discuss a g-tube. After a very thorough 1st...

Hi, my son's name is Jacob he has cf and autism among other things. Just wanted to put this out there incase their is anyone in my area who would be interested in this. We are having a benefit spaghetti dinner/Chinese auction in our area, Vandergrift, PA(near Pittsburgh) to raise money for an...