Search results

thanks, great new :)

My son's mutations are df508 and 1717-1G>A. He's 4 yrs old.

thank you for this info Aboveallislove, and for the question MyBabyCeline. I had initially had the pari "green" compressor that we got from the hospital. After about 6 mos. we ordered the Parti pro which is supposed to put out 46 psi. I notice some difference as it being "faster". I'm really...

Thanks for posting these guys. I'm always looking for anything new and helpful!

Great ideas, thanks all for sharing! And the pic posted was very useful. His equipment, and his meds are starting to (heck...been going on) take over my kitchen table, then spill over to the sofa, and it feels like clutter/chaos! I like the idea of having a set storage place with the...

Thanks all for posting on this topic. We should be getting our first vest hopefully tomorrow or sometime this week. We went w/ the InCourage vest, I only had the options of the SmartVest or that one. I didn't really know the difference, and I had to make a somewhat quickish decision while at...

I did some searching on Google and didn't find anything for D36N relating to CF or the class it might be. Did you check http://www.cftr2.org/ ?

Just reading through these posts now jabug8, saw that y'all went for the sweat test yesterday, and wondering how it went. I'm praying for y'all, and whatever the outcome was, you have some more answers hopefully. Keep hangin in. <3

Thank you so much!! I'm going to read through these, and see what the news is. I truly appreciate you pulling this up for me and posting. If I have any questions, I'll get in touch with you. My little man is doing better, we were able to go home from the hospital yesterday. Up until now we've...

Thank you, thank you Aboveallislove for that info!! We've had a lot of sickness and yuckiness in the house, and our son's first hospitalization occur, and I haven't had a chance to get on here. I've had your response lingering in my head on the current drug research re: 1717-1G->A, and I've been...

I agree with bedtime for sure. Kids in bed, well the one...then waiting on last bottle for lil man. Imported_Momto2 your description sounds soooo relaxing :) I like to make a fire, get under a blanket on the sofa, crack the windows just a but for cool air to come in, and a hot toddy or something...

Bill, I don't think just telling somebody what they want to hear is too helpful. I want to know of any and all info that anyone is willing to share that could help me or enlighten me or my kids. If I don't agree, or choose a different option well that's on me. I don't know your situation re: the...

All your replies have been helpful to read. Believingjesus, I understand about rants and also tend to get mouthy when upset, sad or angry. Most times anger comes out when I'm sad or feel helpless, which is so often these days. I am new to this, I can't imagine yet everything so many of yall...

This is a great idea to compile this type of info for parents/loved ones to read ab first getting diagnosed. Thanks for posting! The first step in our journey was getting the call from my son's regular pediatrician, which came on a Tuesday, my son was about 2.5 weeks old. The actual doctor...

Hey Aboveallislove, he started Prevacid about a week ago. Hopefully it helps his pain and dealing with the acid; also help with the enzymes like you said. He needs all the absorption help he can get.

Hi all, my son is 2.5 months now, but his BM issues are more that it's more often, and it seems too frequent to me. It's about 4 times a day now, where it was 2 a few weeks ago. I get so tired of being obsessed with the poop and frequency and is it too oily, but I can't help it! He's severely...

Hi! I also came across info about this website from a group I'm a member of on babycenter.com. I signed up, and I gave some information about my son's cf condition. A bit later I did receive notification I have a $10 Amazon gift card from Wes Michael from Rare Patient Voice. I haven't claimed...

Hi ChelseaLu! I understand your anxieties and fears very well and sympathize. My son got his cf diagnosis a few weeks after birth, and I was already suspecting something was really not right with his digestion and his stools. He also had not gained that much weight back since we went to his...

I can also relate!! My son was born 10-6-14, and we found out 3 wks later he was diagnosed with CF - gene mutations F508del and 1717-1G->A. I also have a four yr old son non-cf. I was devastated, cried for about 3 days straight. There was no known family hx of CF or even being carriers. Daily...

That is great to hear justdance! I also found these posts doing a search for my 2 month old son's gene mutations which are F508del and 1717-1G->A. It's nice to know there are others on the forum with same mutations, but you're right to try not to get super caught up in what the actual mutations...