Recent content by tysmama

My 3 y/o son was c/o a lot of belly aches frequently with a loss of appetite. His doc ordered a gall bladder scan and he was found to have a failed gall bladder and had it removed at the end of October. His doc said it is common with CF kiddos. He is doing great since!! Worth suggesting or asking!!

I'm just checking to see what everyone else's experience was flying with the vest machine in tow. It is for my 3 yr old, and wonder what obstacles I might face with TSA or the airport. I will be flying with my 3 and 5 yr old so I need to be prepared on what to expect.

Just checking how many have dealt with their kiddos having a cholecystectomy?? My 3 y/o son had his gall bladder removed at the end if October after having many issues eating. Biopsy showed chronic inflammation. Surgeon said this was common with CF kiddos. since surgery he is having some biliary...

I like "Run" by P!nk for my son who has CF. It is such a sweet song from parent to a child.

My sons was done through quest. The doctors office drew the blood and the hospital sends it to the lab affiliated with the hospital. We didn't get the option of lab. My understanding is the test is done the same at either. It reviews the entire gene sequence and checks for any mutation. Takes...

My son had a 55 with coil method and then 29 with gauze method. Both vastly different but still under the 60 confirmation. Either way after genetic testing was found to have mutations confirming diagnosis. Gene testing Is solid answer.

Forgot to mention that I had my flu shot along with my 2 kids and Ty and I both tested positive for influenza B 2 weeks ago. Ty is just now feeling Better but it was so hard on him. my son without CF didn't catch it and only difference was he had the flu nasal mist and we had shots. Just an FYI.

Standard rule is no longer contagious after being fever free without Tylenol or ibuprofen for 24 hours. Most infectious time is 1-2 days prior to symptoms and 4 days following.

My 2 yr old son has the vest from hilllrom and had worked well. The only issue I have is the tubes pop off easy at the higher settings. Other than that, it is easy to use and pretty quiet. He tolerates it well which was nice since with a 2 yr old could be a challenge. ?

So my son started using "the vest" a little over a week ago. He is not a fan by the way. My insurance companies approval dept and medical director denied the claim stating that it is unsafe for a child of his age and had not been proven to really make a difference. It is only recommend for...

Thank you everyone for sharing your stories. I enjoyed reading them and was touched by all of them. My son is only 2, but I wish for him to find love in his life like every one dreams to. Love is a huge risk to anyone. With this situation at hand, It's all about education, awareness and going in...

What you need your doctors office to do is called a prior authorization. It is a form they fill out stating why an over ride is needed. If there is no alternate drug in its class, they generally approve them for a year at a time. Problem is they may approve it to be a tier 3 and has a high...

My 2 yr old son started pancreatic enzymes about a week and a half ago and not much difference yet. His stools arent every day now but when he does go, it is a huge amount and fills his pull up. They aren't as foul as before, but still pretty stinky. He takes them 4 times a day. Do they take a...

Sorry for all the typos!! Also to note, he is not considered failure to thrive, but is average height but thin.

My son is 2 1/2. He is said to have CFTR but is treated as CF would. He hasn't had any respiratory issuers in quite a while. He is always congested and draining a lot. His is mostly digestive right now. He started pancreatic enzymes 1 wk ago and Prevacid 2 wks prior. Haven't seen much of a...