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My son had 1 positive and 8 very high borderline sweat tests (ranging from 54-59). They have not found any mutations only polymorphisms in his genetic testing. He has all the symptoms of cf. He is pancreatic insufficient, needs enzymes, and has a g tube for night feeds. He has lung issues...

I am friends with my insurance agent. He told me if it is not discovered that he has cf withen the first year of paying on the policy, i had nothing to worry about. I am not sure this could be as easy for an adult though. We took out a very small policy on both our children when they were...

My son has cf, autism, severe gi issues, bleeding disorder and a few other things going on. He will be 18 in a few months, so i have been speaking with all of his specialists regarding this upcoming endeavor. One of the main criteria is being unable to perform any substantial work. I would...

Thank you for replying Pat, i greatly appreciate it. I have e mailed a specialist at John Hopkins who has performed many of these surgeries. Thinking i may take him for a second opinion since we are in PA, and he is in Maryland. Only about a 5 hour trip, so not too bad. Thanks sgain, janelle

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...

My son has cf and autism. Taking enzymes was a nightmare when he was younger. This worked for us, and still does. I bought sweetish fish and when he would take his enzymes, he gets one fish. He loves these little candies, and this is the only time he would get these. I never, ever give him...

My son is 17 with other special needs besides cf, and still uses a mask. His doc. said he can do it forever, it is fine to use it. Plus it leaves his hands free to play, so in our situation, it is the better choice.

My son recently had his out. He has cf, autism, and a bleeding disorder. His was done in the OR at children's hospital where he goes to clinic. I think having it done at the hospital rather than a oral surgeon office is a much safer choice. If there would be any type of complication, the OR...

Aboveslllove, our hospital has the patient portal also. It is wonderful. I agree it is so nice to be able to compare the blood test results to prior draws. My son sees 6 specialists and to be able to keep up with all of his info and results at one place is awsome. I also love that i can send...

We look at the comparison of the last year and compare it to where we are today. My sons nmbers hsve been pretty consistent. He does explain what his trend is and where his lung function falls overall. He also che ks everytime to see f his clubbng has gotten any worse. He answers any and...

I am handed the report as soon as my son comes back from his PFT. They give a seperate copy to the doc., who always sits right beside me and we go over everything. It had always been done this way. I just assumed this was the norm.

It does take a long time unfortunately. It took 9 weeks to get my sons genetic testing back, it had to be sent to another state to be completed. I remember the wait was horrible and very difficult to not think about. I wont tell you to hang in there, or to be patient snd all that other...

I agree with you Aboveaaislove. He is too concered with his weight and body.

Why would you risk your healthy lungs and smoke. I think there will be a few people who are struggling with their lung function who will be a little upset that you or anyone with cf who are fortunate enough to be so healthy, would risk it over something so stupid. Many on here wish they were...

My son has cf, autism, celiac disease and numerous food allergies. I have been cooking 2 separate dinners for 10 years. You do get used to it. Most times dinners are completely different because my son has so many limitations and the autism makes him refuse a lot of foods he can have because...

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...

If his is a preschool program, I Am confused. In my state preschool, and I would think all states is not mandatory. I am so sorry they are giving you such a hard time. Does your son require any special services at school like speech, occupational, and or physical therspy? If so, you son is...

There are no quick fixes in life. The only way to loose weight and or gain muscle is through hard work. Eat better, exercise daily. Join a gym, find a buddy to exercise with, ya know, all those things a lot of people do not enjoy doing. Taking supplements or having a certain blood sugar is not...

Thanks Roeann. The infusions lasted 4 hours each day. Not sure what his dosage was. It is day 3 and he is still having bone pain. I spoke to his endo. this morning and he feels he did experience severe side effects that his other patients did not. The next set of infusions he will be...

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...