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Hannah: There are alot of things in this life that we may not want to always do. Like stopping at the stop sign at the end of your street. You may get away with driving through it but one day you will pay a big price for running it. CF treatments are a pain in the ass but if you don't do...

Where in the US will you be staying? Bill

Does anyone else have a problem with this entire story? Bill

WOW!! Everything that you say points strongly to CF. Can you manage to relocate to another state? If you stay in Arkansas and she is dx with CF, you will be faced with those very high costs. If I were you, my first order of business would be to formulate a plan to move soon. Bill

Based upon my experience, stomach pain every afternoon about 4 pm, he should be on enzymes to help his digestion. I would also suggest daily dose of mirilax,to prevent stool build-up in the colon. Talk to your CF Specialist about this. Bill

I inject 5mg of insulin every morning. I check levels when I inject and again just before supper. So far CFRD is very easy to manage. I am not familar with the chip. Bill

Could it be that she is allergic to something that she is coming in contact with, mid-day? Bill

The Cystic Fibrosis Association of NZ should be able to find a CF Specialist for you.

Just bringing this up top so OP can find it.

Contact the Cystic Fibrosis Association of NZ. Level1 Broadway 62 Riccarton Road Christchurch 8440 Freephone 0800 651 122 Bill

There are more than 1800 known mutations, any combination of two can cause CF and therefore PI. Try to get your Doctor to do a FULL CF SEQUENCING. This would test for the 1800 mutations. In the mean time, the Creon should help. Are she/he/they having pain or really loose stools? Bill

I have jumped to the conclusion that your daughter and son are not being seen at an APPROVER CD CENTER by an CF Specialist. Sweat tests or CF Screens should not be done by the local Doctor. If this is the case then you need a CF Specialist. Bill

Sarah: Recently, I was having a conversation with my CF Doctor at Boston Children's Hospital. He said, every patient there with PI is given a sweat test to check for CF. If you will tell me what large city that you live near, I will give you the info on your nearest CF Center. Bill

Brenda: I'm guessing that you have read alot about BURKHOLDERIA CEPACIA. This is the contagious bacteria. This is NOT in the staph family and your son does not have this. Bill

EVERYBODY: She asked about MEDS AND TREATMENTS. Breastfeeding I would have left to all of you. She is new and this was only her 7th post. Bill

Brenda: I'm 72 and still learning about CF. Welcome to the club. You are doing everything that you should be doing and your doing it perfectly. Bill

Actually Scotch.

Brenda: This is a very interesting situation. I'm not a Doctor but I would GUESS that the best thing to do would be to treat him as he has CF, until you positivly know something different. His cronic pneumonia needs to be controlled. His dialated airways and low PFT need some corrective...

Your son may have had his sweat test done at a Approved CF Center but he wasn't seen by a CF Specialist. He needs to be seen by a CF Specialist and have a FULL CF SEQUENCING (a testing for every known mutation). The two sweat tests do, in fact, show that he has CF. This is NOT an issue for...

CF is not contagious but when we cough we can/will spread the same germs as any non CF person. My guideline would be, what would you do if we were talking about a non CF child. If you, or your neighbors, would send them, sent the CF kid. The same good sanitizion rules should apply for...