Doing it solo, need help!

[Mom_EC]

Hi All, I’m divorced from my son’s father & my son was recently diagnosed w a mild variant CF. There are no signs of enzyme deficiency or malabsorption, and his mutations suggest those will not be issues for him. So I’m looking only at preventative treatment for lung disease.

The doctor has laid out a treatment that is 45 minutes of “stuff” assuming my son cooperates. My son is 6, and is a strong personality in all ways. I’m not expecting smooth sailing given is sometimes argumentative personality regarding doing things he doesn’t want to do (pretty normal stuff, but the doctor has discussed with me that it can be difficult with older kids).

Few questions:
- Anyone with a child diagnosed in the 5-9years old range, too young to really get it but old enough to possibly reason with. How did you help them understand the importance of the therapy?
- Are there therapists/csw that help the child understand? How do you find them?
- Is there a “babysitters”/caregivers network? How do you find your local one? I can adjust my work schedule but I’ll need someone twice a week to do the afternoon/evening treatments or I’m going to have to switch careers.

Thanks so much!

 

[Ratatosk]

We've always worked about our work/school schedules for nebulizer vest treatments. I know of a few people who've gone to the daycare or school to do treatments during the day; however, we didn't want to disrupt ds' "normal" school routine and make him stand out. We do CPT (vest) in the morning, then right away after work (5ish) and then again before bed. We've always done 3x a day but have been told twice is adequate unless ds has a cold or cough and need extra. Vest time is the time he can do whatever he wants -- xbox, read, ipad, tv, dvds... it's his time to encourage him to do so. In fact, we got him his video gaming system to keep him occupied. Being he was diagnosed as a baby, he knows what's expected, that he needs to do this to keep his lungs healthy so he doesn't miss out of the fun stuff.

I know some of my coworkers (no kids wcf) have hired college students to come to their homes to help take care of their kids. Placed a notice at the workstudy office.

 

[kenna2]

I was diagnosed at 7. My parents have always been about routine to keep things organized and what not. It's really been beneficial towards my life and my CF. The best thing you can do is establish the new routine immediately and stick with it. This way your son will understand that this is how things will be from now on. It's important that you aren't flexible with it yet since this is what you're trying to establish. As soon as I got up and right before I went to bed is when I was taught to do my treatments. That way I have all day to be a "normal kid" and focus on everyday things. I still adhere to that schedule now at 32 years old. While I did my meds growing up I was allowed to watch TV. I wasn't allowed to during the day so that made it exciting. Let him play video games, watch tv, play on the Ipad, or something that will keep him occupied and something he likes doing. As for compliance from him, that will always be somewhat of a challenge. The important thing is to not give him a choice of doing it or not. Stand your ground. If he doesn't like it tough, but remind him he's going to miss out on all the fun stuff by NOT doing his meds. Ask him how he is going to feel when he is sick and can't do anything, while all his friends are doing fun things. I remember my parents asking me that all the time every time I fought with them about doing my meds and I always wanted to be with my friends so I did them.

As for help, I like the idea of hiring a college student to help. Especially if they are studying to work with "special needs" children. That way these young adults already have a build it interest in helping and know that certain extra requirements will be needed while watching him. At 6 he is able to figure out how to set up his meds and I would encourage him to learn and do it himself. That way when you're away from him, whoever is watching him can focus on making sure he's breathing while doing them and turning on and off the machines since he'll be focused on whatever it is he's doing with his meds. You can do this!