What do you Centers do for transition of care?

[Aboveallislove]

Out of curiosity, what kind of things do your Center's do to help transition care? For instance, at age 5, our CF doctor reviews the "contract" of treatment and has our son sign. She explains what the medicines do. I try to have our son also tell the nurse his meds when she reviews what he is on and always ask him if he has any questions and have him answer. I'm wondering more specifically, if the Centers give any guidance on things like how to/when to transition management of prescriptions and insurance? Do they suggest you do? How? When?
I intend to have DS start managing the ordering, filling out insurance paper work, explaining etc. when 10ish, but was wondering what Centers do or do they not focus at all on that aspect of managing the disease?
Thanks!

 

[Rebjane]

Our RT has come in and "quizzed" my daughter on her nebulized meds; the order they are given, names, and what they do and are for. He did that a few years ago and was very impressed she knew them all and what they do. He encourages my daughter to do her nebs herself instead of ME doing everything.(we've been slacking on that) My daughter has had lots of stuff flaring up this past fall and into the winter so I've taken back the neb responsibility. But we'll get back on it.

I think it's a slow process; The CF doc always asks my daughter if she has any questions and she always say no. I have to work on her speaking up for herself. She knows how much I do in terms of getting meds ready, taking care of bills etc. She listens to how I handle difficult situations. I am hoping she will learn to "model" me as I ask the difficult questions and am constantly advocating for her.

The hard part is when she really is sick and doesn't feel good is when one must advocate for themselves the most but she also feels so yucky she would not want to. I worry about this. Course she is only 12, and I also think she is relieved that I am always there making sure she gets what she needs.

 

[Aboveallislove]

Thanks so much! Very helpful. Totally unrelated, but how's her tummy? Did she ever do flagyl? What are they having her do for maintence? Did they Ver diagnosis or say what the issue was? Hope she's doing well!

 

[Rebjane]

Above,

I PM you.

 

[triples15]

Hi there Love!

This is a good question. I don't remember this being something that was ever addressed by clinic. I could be wrong though, it would have been *awhile* ago.

I really don't want to offend you, but want to give my opinion as an adult CFer regarding when to start the transition of responsibility in regards to ordering refills/insurance. I think 10ish is too young. But again, that's an opinion. I am 34 and the world of CF in regards to medication ordering, insurance billing, appointments etc. is overwhelming and at times depressing. I think 10 (or even 11 or 12) is too young to have the weight of that on you. I never knew how much I was costing my parents, therefore couldn't worry about being a burden or stress about it. I didn't really know much of anything pertaining to payment of prescriptions and medical bills, and I'm thankful for that. At 10 he should be worried about being a kid, and of course doing his treatments. That's enough. I'd start the transition when it's coming closer for him to leave home. Or if he's not leaving home at 18, then maybe start the transition around 16-17? I think he could start ordering his own refills before this, but I'd wait on the insurance stuff. It's just so overwhelming, and really an adult issue.

Anyway, that's my 2 cents on the subject!

Good luck and take care!!

Autumn 34 w/cf

 

[Aboveallislove]

Thanks Autumn and absolutely no offense. I hadn't thought about the "burden or stress" aspect, so I'll make sure it isn't presented that way, but I was raised where we did that kind of stuff. My mom had me writing check for bills and balancing her check book at 10. (I still remember how when I was like 7 with my neighbor and her mom at the local "Value Village" and wanted a teddy bear, I said "can you take me to the bank?" I went, withdrew some money from my checking about, went back and got it (still have it). My mom asked me how I got the bear and I explained. (She made a new rule after that that I had to ask first...which baffled me as it was my money and she showed me how to do it!). I wouldn't "dump" it on him and it would be a step by step thing, where I explain, ask him questions, have him call and see if stuff is ready, etc., explain in "open season" what is important to look for in insurance, have him help fill out paperwork, etc. Of course when he gets older if it seems too early at the time, I'll hold off. Thanks again for insights!

 

[Ratatosk]

With DS, who is 11 and an only child, we still do pretty much everything for him in terms of preparing nebs, oral meds and ordering prescriptions. We do talk to him prior to appointments -- that he can and should bring up any concerns or ask questions.

I do go over each an every medication he's on -- what it's called, what it's used for. I've had him get his nebulizers ready, so he knows how to do it. When he goes to movies, family gatherings or to friends homes, I send a small bottle of enzymes along with him, remind him to take them and how many. He actually does better than a friend of mine whose in his 40s who is FOREVER forgetting to bring along enzymes when we've been out for drinks or to CF events.

He does put on his vest and starts it up. Turns on his nebulizer. Next year he transitions from daycare and elementary school, so he'll being hopping the bus to and from middle school. So he'll be getting his vest, nebs and meds ready when he gets home from school.

 

[Beccamom]

When my daughter turned 14 we were given a checklist of things to transition to her over the next 4 years, so by age 18. The first big item was she goes into the PFTs herself. By 14 she was doing everything on the list except ordering her refills for prescriptions and ensuring the filter in her neb compressor is changed every 6 months. The other change at 14 that I really welcomed is my daughter calls and talks to the nurse to describe new symptoms and decide on antibiotics increased mucus clearance etc. At first she did this on speaker phone, but now they talk then I talk to the nurse to agree and that is that. The last visit to peds the adult pulminologist comes and so that helps with a smooth transition. On the same note I highly recommend kids to overnight camp. This was the best way for my daughter to really take an interest in being self sufficient. She had set up her vest and nebs, sterilize, administer etc all herself. Her camp had no nurse, but a parent volunteer was a nurse. This occurred before her freshman year of high school. All along her doctor and respiratory PT talk directly to her about symptoms, meds, tests, etc.

 

[Beccamom]

10 is too young as neither the insurance company nor the pharmacy will talk to a 10 year Old. I understand your concern and see my other response with more details. At my adult CF clinic there are adults whose parents have never missed a clinic appointment and answer every question, handle insurance, prescriptions etc. I remember a dad talking to me in the waiting room about his 25 year old with CF and how he takes care of everything for him. He was shocked at my response which was by 25 I was married with two kids and had a masters degree and worked full time. It was time for his kid to grow up.

 

[Jeana_Lynn]

First of all, I am so glad to see that clinics are putting transitions into place for children as they become adults with CF. That was not done when I was young and I believe it would have made a world of difference. Around junior high, my parents dumped the responsibility on me of taking my own meds, and to be honest I didn't do them. In fact, after I graduated from high school, I didn't even go to a cf clinic until I was about 23, when I was hospitalized for a lung flare up. It was at that time that I started taking an interest in my own health. I agree that chunks of responsibility for cf care need to be given as children get older. I also believe that parents need to continue to monitor the job the children are doing. More importantly than the financial aspects in my mind would be the treatments, washing of the neb chambers, documenting fev1s, symptoms, questions. These are the kinds of things that seem more pertinent to a 10, 11, 12-year-old. I agree with others that the financial aspects should be shelved till high school. Also, keep in mind that even when adult cfers get sick, treatments and such start to slide because of exhaustion. Be extra vigilant then.