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. There will also be blood draws to check levels throughout the treatments. Since it will be outpatient, they will be taking the IV out before he goes hone requiring him to have the IV placed both days.
The treatment will last for one year, then they will repeat the Dexa scan. They said that because of his very low z scores treatment will continue for an additional 1-2 years.
My son has a hard time with needles. His veins are not the greatest and his anxiety can get bad with severe fear, racing heart, cold sweat, ears buzzing, and feeling line he will die. He sees cf clinic, gasto, endo, rheumatology, and nephrology so he does have blood work often. The worst incident is last year when he had his yearly blood draw for cf clinic he experienced everything mentioned above, plus within minutes of arriving home, he blacked out on the second to highest stair in our house and fell down 12 stairs hitting his head and having a seizure.
we are discussing the possibility of a port for him with his pediatrician who is talking with endo. One concern is he has a bleeding disorder. He has had past surgeries and they are always very prepared with blood hanging and ready to go if needed, but it still is scary.
Just wanting some opinions on what to expect if we do it, pros and cons, and whether it is a good idea.the autism makes it hard for him to understand and the anxiety of knowing he will be getting stuck is just as bad as when they are doing it. If they treat for 3 years, that would be 24 IV's being placed just for this medication. Nt including all of the blood work he will need or any other
IV's. Sorry this is so long, I just want to do what is best. Thank you. Jshet
The treatment will last for one year, then they will repeat the Dexa scan. They said that because of his very low z scores treatment will continue for an additional 1-2 years.
My son has a hard time with needles. His veins are not the greatest and his anxiety can get bad with severe fear, racing heart, cold sweat, ears buzzing, and feeling line he will die. He sees cf clinic, gasto, endo, rheumatology, and nephrology so he does have blood work often. The worst incident is last year when he had his yearly blood draw for cf clinic he experienced everything mentioned above, plus within minutes of arriving home, he blacked out on the second to highest stair in our house and fell down 12 stairs hitting his head and having a seizure.
we are discussing the possibility of a port for him with his pediatrician who is talking with endo. One concern is he has a bleeding disorder. He has had past surgeries and they are always very prepared with blood hanging and ready to go if needed, but it still is scary.
Just wanting some opinions on what to expect if we do it, pros and cons, and whether it is a good idea.the autism makes it hard for him to understand and the anxiety of knowing he will be getting stuck is just as bad as when they are doing it. If they treat for 3 years, that would be 24 IV's being placed just for this medication. Nt including all of the blood work he will need or any other
IV's. Sorry this is so long, I just want to do what is best. Thank you. Jshet
