Deb/ Mom of 17&18 w/CF

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Liza

New member
Hi, I'm Liza. I have two teen girls w/CF. One is 14, freshman in HS and the other just turned 18 earlier this month with graduation fast approaching in 17 days.

I just wanted to ask if your girls are off to college this year or if one of them is already there? My oldest is going off this fall. She'll be living in the dorm. No roomate, single room. She's excited as are we... BUT...
She'll be 12 hours away. I was just wondering if you were in the same situation, kids off to college and how you were handling it.

As we get signed up for registration, enrollment, classes, dorm room etc. It gets closer and closer. She'll have to drive about an hour to her clinic appts. and to get her port flushed once a month. Any advice anyone can give on how to help without smothering or sounding like I'm nagging (at least too much)?

We have an odd situation as we are the ones moving (military) and she is coming back at the end of summer. So she has friends, and will be able to keep her same CF clinic. How do you just hand it all over and expect her to remember to refill her meds, pick them up etc.? It's not like she can practice while at home because in the state of NE you can't pick up your meds until age 19! Yea, ridiculous I know, but you are not an adult here until 19. I haven't figured out yet how that's gonna work, there's got to be some provision for college students. Guess we'll see. Agghhhh! I feel stressed just thinking about it all.

Thanks to anyone that can give me some advice.

Liza
(mom of 2teen girls w/CF,one about to fly the coop)
 
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anonymous

New member
Liza,
My brain was not working ,my girls will be 17 & 18 this June and July. My oldest will graduate on the 21st of May. Right now she will be goin to a college about 1/2 hr. drive from home. She still will be stuck with me. Thank God. I can't imagine how hard it is for you. As for as them filling meds. GOOD LUCK. I still stay on top of them to take them.

We have always kept their weight up, and now I think the teenage years they go threw I faze to see how for they can go. They get so defensive, when you ask about the treatments. We been so lucky my oldest has been hospitalized 3 times, at birth and once for 2 days for a picc line, and another time for a week. and the youngest at 3 months, for 2 weeks.

Deep in my heart I know they can take charge, they do, when I'm working. They know what has to be done, and how to stay healthy. But at times I think they like us around just telling them what to do.
Deb
 
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anonymous

New member
Liza.

I have two kids w/cf both in college. (junior & sophomore) both go to the same school, which is nice. They are 6 hours from home. Only 20 minutes from an Adult Cf Clinic. I use a mail order pharmacy that will deliver the meds right to them. Tobi on ice, over night. It's through my insurance, they can get a 3 months supply at a time. You will need a small refegeraitor in her dorm, a sink and a micro-wave. Their some micro-wave bags for sterlizing the nebulizer cups. They are made for breast pump, made by Medela, they work great for nebulizer cups.
Thank God for good CF nurses. If your clinic has a good nurse your daughter will be fine. They will help them when you are not there. Trust your clinic! If you ever want to e-mail me with any questions, I have done this twice now. Lolliepap@comcast.net.

Lori
2 college students w/cf
 
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Liza

New member
Thanks so much. I had not heard of the micro bags for sterilizing. I was wondering if you could microwave the Pari nebs in water to sterilize them. We usually just rinse in hot soapy water and only boil once a month. My husband was thinking she might need two refrigerators in her room. I don't really think she will though. She only uses Pulmozyme that needs to refrigerated, her other inhaled antibiotics are room temp, Gent and Colistin. I just feel like we'll need a giant trunk for her other meds, enzymes, vitamins etc. She is registered with the office for students with disabilities and they seem great. She is excited, we are excited but nervous. I'm sure it will all go just fine, I hope. She's just so anxious to be on her own.

Liza
(Mom of 2teen girls w/CF)
 
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anonymous

New member
My kids did fine with one refrigerator, it was not the really small size, and it was about 2ft tall. The bags I was telling you about are called Quick Clean Micro-steam bags made by MEDELA. You can re use each bag 20 times. You put in 2oz of water in the bag close it and micro wave it for 2-5 minutes depending on the watts of the micro-wave. My kids do the Pari cups in it. We found out about the bags after my daughter forgot her cups while boiling them. She melted them opps! My kids both live in an apartment this year. as freshman year they both lived in a dorm. I found the bags on-line. They say Target carries them but I have never found them there. We bought each of our kids a 3 plastic drawer thing from K-mart or Target to store all their med in. That worked really well. We also took them each a small recliner chair to have while vesting and sometimes sleeping. When they are sick my kids like to sleep slightly reclined, not laying flat. I try to think up some more suggestion.

Lori
Mom 2/CF college students
 
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