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Hi guys. Got my sons culture results today, and the only thing that grew was e coli. They said they do not treat it. The nurse also said it probably is due to him refluxing. He is on reflux medication already. He did have a drop in his pft's at clinic, but his doctor was not overly...

Hi. Was wondeing if any of your kids go to the cf clinic at children's hosp. pgh. My sons doctor unfortunately is retiring in July, and we need to choose a new doc. withen the practice. I have 2 doctors i am considering, and 1 that is a definate no. Besides being a great doctor, we need one...

Hi! My post is for anyone who has had nitrous oxide during a dental procedure either adults or children with cf. My son had a small cavity that needed taken care of, and the dentist thought "giggle gas" would be best rather than giving him a shot. The dentist is the head of the dental...

Hi everyone. My son had a port placed this past april and did not go well. His lung was punctured twice, he developed a phneomothorax, and ended up needing a chest tube and a week in the hospital. Until January there were no issues. It had worked perfectly. After his infusions in january...

Hi guys! Anyone ever have issues with their Hillrom compressor? Yesterday my sons just stopped working. No warning signs at all. It has 512 hours of usage on it. Not sure what is typical for these machines before they start havibg problems. I plan on callng the company in the morning...

My son has struggled so hard with weight. He is 5'5, and weighs 76 pounds. He is pancreatic insufficent, enzymes are not the issue. He is allergic to gluten, milk, dairy, soy, and rice. Plus he has autism and because of textures and tastes he will only willingly eat 7 foods. He does have a...

My son recently turned 18, and i applied for SSI for him. He cf, PI, autism, and a host of other conditions requiring him to see 6 different specialists. I applied less than a month ago, and received a call on Friday that he has been approved. To say i was surprised to get a decision so...

My son had infusion therapy on Thursday and Friday of last week. He has received this medicine before. On Saturday we noticed some swelling around his port. No pain, redness, warmth, or fever, just swelling. I have kept n touch with his peds office Saturday night until today, and they don't...

Must son, (recently turned 18), has something a little odd going. One week ago it looked like his forhead above his left eyebrow was swollen. I felt around, and found a hard, solid, small, about the size of a grain of rice, just below, the inside part of his eyebrow. It feels as hard as a...

Hi everyone. My son had a collapsed lung back in April that required a chest tube. He had no symptoms, only a drop on oxygen while sleeping. It happened while he was having his port placed. He recovered 100%. last night he began to complain of right shoulder blade pain. He had not done...

My son had his clinic visit today, and he had a drop in his PFT's. His doctor said he is not too concerned because his FEV/1/FVC and FEF 25-75 were pretty much the same as last time. Of course being a mom, i can't but be a little concerned. I must admit, i still don't understand reading...

My son has cf, autism, and other special needs. The following post is completely off topic, but since this is such a large community, i am hoping someone has experienced this or knows someone who has and can answer my questions. my son has a malformed tailbone, that protrudes out very far...

Hi everyone. My son age 17 had his yearly blood work with his OGTT. I am wondering if anyone can tell me if I should have any concerns. They did a three hour test, and did blood draws at the start, at one hour, and then at two hours. His glucose levels all fell within normal range. But his...

Anyone taking Pamindronate infusions for osteoporosis? If so, are you experiencing any side effects, and what are they? My son just had his first set of 2 day infusions and he is having pretty severe side effects. Some nausea, with severe bone pain. The pain is so bad, they had to put him on...

My son tube feeds 12 hrs. a day. About a week ago he was just not himself, hot, sweating, stomached ache, just out of sorts. I decided to check hiis blood glucose and his # was 58. It was about 2 hrs after his feed. We have since been taking in the morning and randomly throughout the day...

My 17 year son went in on Tuesday to have a port placed. An outpatient procedure that was to last 45 minutes took over 3 hours and 3 tries to place and caused a phenuothorax. He was admitted and they went back and forth on whether to put in chest tube. Though it hasn't improved, he wasn't...

My son will be having a port placed next week, and I'm getting a little nervous. He also has a bleeding disorder, which makes this a little more of a big deal. The surgeon is very confident and they will have blood hanging and ready to go if needed. he will come home same day as long as there...

Have a few questions for those with Pic lines. How long has/had your Pic line lasted before needing to have it removed or replaced? Anyone make it a year or longer? For anyone who had to have a Pic line changed out, how long does that take, what is involved, and how does it compare to the...

Hi everyone. We are currently deciding between a port or a pic line for my son. He will be doing IV infusion therapy every 3 mos. lasting 2 days for probably the next 3 years. he has a bleeding disorder so a pic line may be a better way to go for him. Was hoping to hear some experiences with...

Hi everyone, my son has cf, autism, severe anxiety disorder, bunch of other stuff, and most recently severe osteoporosis. He endocrinologist wants him to start infusion IV therapy as soon as possible. The treatment plan will be IV therapy every 3 months for 2 days lasting 6 hours each day...