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Thank you MichaelL. Can you please explain what is all involved when it has to be replaced? How difficult is it? How long does it take? I was told it would take 1-2 hours to place it initially. Would he need to be sedated to replace it the way he would be when it is placed? He does have...

Thank you Gorf. I think the docs are leaning towards the pic because of his risk for bleeding. I am thinking we would prefer the port. Couple extra questions. How long can a pic line stay in? Could it last a year? When it has to be replaced does that mean he would have to undergo 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...

Enzo2311, I was wondering if you have had blood work done to find out what your testosterone level is? My son just recently had his level tested due to a recent diagnosis of osteoporosis. There is a huge range of what is considered normal. I am doubting your doctor will prescribe any of...

Thank you Aboveallislove for the compassion. My son is very blessed to have so many people care about him. I really appreciate it. pipersmom, thank you for sharing your experience. It seems our children have a lot in common. It does sound like the port has with your daughters anxiety, and...

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...

Jbrandyn, I have been where you are. I take care of my mother n law who is on some strong pain meds. Members of the family have taken them in the past leaving her to suffer because we could not get a refill. My solution was easy and obvious to everyone which was fine by me. I bought a...

Colleen, enzymes would be used if he is pancreatic insufficient which is found with a test done from a bowl movement sample. Typically if they are pancreatic insufficient, they have stools that are fatty, loose, leave an oil ring around the toilet when they flush, smell terribly and are hard to...

Hi. I was wondering if he is being treated with vest,nebs,enzymes or is he just being watched? I think at this point it really doesn't matter what they are calling it as long as they are treating it. Just curious if he still has his tonsils and adenoids? My son had his removed and it...

You definitely a loving mother who only wants the best for her kids. No selfishness in you. They are so lucky that you are putting so much thought and effort into your decision. It's a shame that at such a young age you already have to pre register them for things. Everything is so...

Call me old school, but I think sending any 18mos. old cf or not to preschool is strange. Preschool age is 3-4 years old, not 18 mos. Everything seems to be such a race for our children today. What really are they going to get from school right now besides sick? Enjoy them. They will be...

Thank you Pepper Kitty. Gosh those side effects are frightening. I hope we bypass all of that. Because of his severe GI issues, he is not a candidate for oral meds though. His osteoporosis is severe. We were told they do not usually diagnosis this in children, they say low bone density...

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, I was just wondering if he had a 56 on both arms or did they not get enough sweat from one of the arms?m Typically you are given the result for each arm. The numbers are usually close to each other. If they only gave you one number, I would call and inquire why. If they did not get...

Hi, I was just wondering if he had a 56 on both arms or did they not get enough sweat from one of the arms?m Typically you are given the result for each arm. The numbers are usually close to each other. If they only gave you one number, I would call and inquire why. If they did not get...

Thank you MichaelL for your reply. I am hoping to hear from the endocrinologist tomorrow. He does exercise which I am glad is helpful. i Am sure he will need to start the vitamin D up again which is fine . I am hoping this is reversible since he is so young. Thanks again. Janelle

Hi. My son had a gj tube placed a year ago and also had an infection. His was staph though, but the pain was intolerable for him. It took 5 rounds of clindmician to clear, and he was miserable. when they did my sons, they put these 3 feet(what they called them) on the site to help hold...

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...

Thank you Michelle, I appreciate it. Oscar is amazing and we are blessed to have him. He has helped my son so much. The changes in him in this year that we we have had oscar are hard to even put in words. the contest runs through the 26th and you can vote once every 24 hrs. If you get a...

Thank you for voting rtorres25. We appreciate it. Voting is going on until the 26th and if you are on here each day, please try and vote. Thanks again. Janelle