I have a 7 year old w/cf. I was very torn about sending her to school. I have a child 14 months older than her in the next grade that is already attending school. We decided against it. The first year my son attended he brought home everylthing. I talked to the teacher about his sister and trying to keep me informed about things that were going around the school. We did all the anti bacterial scrubs. I bought the whole class some. She said that is was not effective. She was not very supportive. Only to my my face. Did she act agreeable to our needs. My daughter w/cf spent 2 weeks in the hospitals for cf, during that year. Then she came home with a home health nurse for another month. I had to give her Iv's 3 times a day for a month after she came home from the hospital from a pic line. My girlfriend has a little boy the same age with cf. she has exposed him to every day care in town. She sits in the waiting rooms at the cf clinics with him, she sends him to school, she says that the doctors have told her not to make him feel differant than anyother child just because he has cf. Let him have fun and be a child. I dissagree. When I look at him now, it breaks my heart. He has had pseudo, several times, he has failure to thrive, they put a feeding tube in and a tube in his throat. Now does he look like a regular 7 year old. That can play, like everyone else can. That is why we decide to keep her out. She does get social skills. The school is very good about us coming and going as we please. We have a school sponsored teacher. She comes to the house, we can also go to the school if we want to when she feels like it and attend any class that we want. Or go to reccess with her class or go to eat. She still is sick. But near as sick as she would be if she was exposed on a daily basis to the breeding ground of germs that a school has to offer. She is slowly building her immune system, maybe this will give us more time with her. I would rather prolong her life than to push her into feeling like she was like everyone else just so that later on down the road we have a sicker and shorter life span. She is allergic to all antibiotics. So if she get pseudo, we have little options for treatment. We are very lucky that she has not had it yet at 7. There are so many mornings that she feels terrible. We have since sent her to the allergy clinic and they have done wonders for. Much more than the cf clinic has done for her. They did a ct scan on her sinus cavity and they told me a peron w/cf sometimes never fully develops their front cavity. She does not have hers. But what she does have is all infected. The cf clinic could not detect that. They are now treating her for that. This is what was causing her terrible headaches. She is on her second round of antibiotics if this does not knock it out they are going to do surgery. I urge all of you with kids w/cf if your children are complaining with headaches and your cf clinic is not being aggresive in treatment. Please take your child to a allergy clinic. More people that I have dealt with that have cf have major allergies. And if they can find out what they are allergic to they can get some of the conditions under control.
