Search results

Hey everyone, I wish I could be writing this with some positive response but Its just not happening today. Our clinic finally had our other children tested. We could only take 4 on our 3 hour trip to the testing clinic. We drove down the night before and stayed at the hospitality house at...

Hey there everyone, We have been a little busy and I havent been able to post in awhile. I have posted this on another topic but oh well. Here it is June 19th and the appointments for our other children still have not been made from our clinic. Lets just say when we go down for his appointment...

I was speeking with my husbands cousin the other day we finally found out which side of my husbands family it comes from. BUT, its not the same mutation as what my son has. Dylan carries the R117H and Delta F508 was diagnosed within my husbands family. So we could possible have 2 mutations one...

Well its 10;00pm monday evening and something just hit me. Dylan came into my room as he was getting ready for bed and told me that he couldnt stop going to the bathroom all day. I really hadnt noticed because we had a garage sale all weekend and I spent most of the day outside along with all...

Need to VENT! The last time we saw our CF doc was April 23. That is when we received the DX. (Keep in mind that back in December they told me my son was only a carrier. And 3 months later they called back and said "oops" we made a mistake.) At that point they sent home with us 4 testing kits...

Hello everyone!! I have already posted this question to Steve and havent heard back from him. I posted it a second time just in case he missed the first. If any of my other children have CF is it Common for them to have the same mutation as my son that has been diagnosed? And when they test...

Hello to everyone!! Just a quick update and I will get to the important stuff!! We received our sons Fecal elactase test back and he doesnt need enzymes right now!!! YIPPY!! We started his Palmozyme treatments and his ACT's. Wow, we are up to early in the morning!! All his meds take about and 1...

How do or can I handle my children with CF staying the night away from home? What about his treatments?? Can I trust someone else to make sure he takes his meds and is that fair for me to do?? This is all still so new!! Tina

Hello again. We just finally got the diagnosis we were hoping we wouldnt receive. Now hopefully he will get the care that he needs. Tomorrow, we will seeing his Doctor to start treatment and there are certain test that they have to do. One of which is a lung test. Is this the same as his...

Hello, Here were the test results CFTR Full Gene Known Mutation R117H Novel Variants None detected TG repeat / Poly T Variant (TG)12-5T / (TG)10-7T Further family testing needed.... What does the mutation tell us and What will our blood tell you? Devos Childrens Hospitol tells me that he...

Thank you all again for your support!! Yes, his doctor and clinic is Cf accredited...they just dont seem to be moving as fast as I want them too. Does time matter??? I have clicked on the Ambry site but cant seem to navigate...I cant find where to ask steve....HELP!!! lol.. I'll be here, Tina

Hello, This is for anyone who has gone through what we are right now. Back in December we were told that our son was negative for the delta508 gene. BUT what a carrier of R117H gene on the 5T and 7T. We received a phone call yesterday stating that he has an Atypical form of CF. Now my husband...