Parents with CF who have children with CF

[Beccamom]

So in my family we have hada shocking turn of events. My daughter 12 is still in Cf diagnostic limbo. She is treated for CF. In an attempt to get our insurance to pay for an Ambry genetic test for my daughter I asked my doctor to put in for the Ambry test for me. My thought was my daughter's test went to a different lab, her sister's went to Ambry and with my test I could get the insurance to pay for Ambry testing. It did not turn out that way instead I found out I have the one gene I knew she had and I also have the 5T variant I gave her sister. Well, it explains all of my symptoms. Two days later I saw the adult CF team and now I need advice.
So how do you all do this. My daughter does her nebs and vest twice daily. I start my nebs today and we leave for vacation tomorrow. I start mucus clearance after vacation when I meet with the CF respiratory PT.
1. How to do you schedule? Do you do your treatments together or is coughing on each other a problem? Do you set up all the medical stuff in one room and keep it all apart?
2. Do you sterilize your nebs separately? For my daughter I wash with soapy water, rinse, and then sterilize in the baby bottle sterilizer. Can we each use a different type of Pari neb and sterilize together or would we pass germs? Can we use the same sterilizer separately?
Thank you for any support.
Jen

 

[Mistyjo]

I have no advice but good luck! That's a lot to handle! I know you will do a great job of taking care of yourself and your daughter.

 

[AUG19DW]

I have 2 children with CF and the dr.'s at CF clinic told me to keep them as seperate as possible. Keep tooth brushes away from each other. Preferably in diff. bathrooms. Do not drink out of a cup and put it in the fridge to save for later. Do not use the same Pari. Do your airway clearance in a seperate rooms and sterilize everything seperate. Try not to cough in front of each other if possible and if not possible cover it with a tissue or your sleeve or arm. All their meds stay in seperate rooms and as far as pills and paris they are in containers on the opposite sides of the kitchen also. Do not share brushes either. Of course you can wash your clothes together that is fine, or at least they never said anything about that. And be very careful if one of you get sick stay away from each other as much as possible. Especially if one of you has a weak immune system. Hope this helps some. It is very hard to do all this but you will get used to it. But I am sure especially hard to keep you away from the kids when you are the mother and you are supposed to take care of them. It isnt as hard keeping a brother and sister away from each other as a mother and child.

 

[JustaCFmom]

Wow! I can totally empathize! I actually did a sweat test and got 74 twice. I want to do a full genetic screening because they just found one mutation out of a panel of 13. I want to put my mind at rest. I have some very mild respiratory symptoms, not really CF. What are your symptoms?

Hope your vacation goes well and you get to enjoy it.

I sterilize my kids equipment in the same sterilizer. Their pieces don't touch each other and I assume that sterile is sterile. They are labelled I and 2 (the oldest is "1", younger one is "2" ). The younger one does nasal rinses and takes one medicine as a syrup through a syringe. Those don't get used for anything/anyone else. And I throw those into the sterilizer for good measure.

I think that there is an aspect of "quality of life" as far as being a Mom with CF and having a daughter with CF. Maybe you just need to be extra vigilant about hand washing, which is also being a good role model. Everyone understands that close family members with CF are in a special category because they live in close quarters.

I do have each CF kid sleeping in their own room to help minimize cross infection, but I am not about to tell them to stop being human! (ie. stop hugging each other) They don't walk around the house with masks on. Maybe if they were seriously ill I would do that differently? But, personally, I find those mask quite uncomfortable so I don't know if I would want that even then.