Teenager and trips

[farmfamily]

I need to ask your opinions and solutions. I have 2 children with Cf 9 yr old girl and 14 yr old boy. They are very complient with their med's and breathing treatments we just work around life. Here is my problem my 14 year old is headed off for a trip 5 days without us; Just his peers and sponsors. Not the first time but I believe it's the first time when he's been on TOBI. It's always worked out where he's been off TOBI. He is really putting his foot down. He will still take his med's he just doesn't want to do TOBI twice a day in the room. (Or anywhere else) What do the rest of you do when they are becoming more independent?

Terri
Mom of 3 2 w/CF

 

[anonymous]

I have had this problem before also and refused to take the medicine. The deal is there are times when we are not going to be 100% perfect with our medicine. He doesn't want to take it and chances are if he is forced to he won't do it.

My doctor told me to then stay on TOBI five days more. so I missed five days and then made up for them in the end. Not the best way but it was the way that worked for me at that time.

My guess is there is nothing that you are going to say to change his mind at this point. It is hard to let go but you are going to have to. Just teach him how important his medicine is and that is all you can do.

My doctor told me that it would probably take me getting really sick to realize how important everything is and he was right.

Good luck!

Sue 24w/CF

 

[Alyssa]

I have not had to face a decision like this... I wish you the best outcome.

My only thoughts would be, in the grand scheme of things, seems like 5 days off isn't (hopefully) going to make a huge difference in his health. If he generally takes good care of himself and this is important to him.... it is part of growing up and taking responsibility for yourself ~ that also means taking risks sometimes and he needs to figure out where the line is for those risks. It is at this age that on occasion the parents need to give a little more freedom when they can (choose your battles so to speak) Although I'm sure nobody can tell you it is 100% safe to skip the Tobi for 5 days, I hardly see it as reckless or dangerous either... if his foot is down, maybe you ought to let it stay there

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>anonymous</b></i>



My doctor told me to then stay on TOBI five days more. so I missed five days and then made up for them in the end. Not the best way but it was the way that worked for me at that time.
</end quote></div>

Yikes! That's a fantastic way to promote resistance.

There are limited drugs that CFers can take for PA, so I would be EXTREMELY careful about taking your TOBI for the full 28 days with no days missed.

Antibiotic resistance is a sure-fire way to get sicker quicker!

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>farmfamily</b></i>

I need to ask your opinions and solutions. I have 2 children with Cf 9 yr old girl and 14 yr old boy. They are very complient with their med's and breathing treatments we just work around life. Here is my problem my 14 year old is headed off for a trip 5 days without us; Just his peers and sponsors. Not the first time but I believe it's the first time when he's been on TOBI. It's always worked out where he's been off TOBI. He is really putting his foot down. He will still take his med's he just doesn't want to do TOBI twice a day in the room. (Or anywhere else) What do the rest of you do when they are becoming more independent?



Terri

Mom of 3 2 w/CF</end quote></div>

I would have your 14 year old sit down with the doc and have the doc explain what consequences could be of not doing meds.

Let the conversation be between your son and his doc. And in the future, if he doesn't do his meds, let him be accountable to his doc - not you. He may be rebelling against you, but he's more likely to listen to and remain accountable to his doc.

Dont' nag him or push him to do his meds. But when he refuses, just remind him that he'll have to discuss the situation with his doctor.

 

[Jane]

I think the moms of teenagers all feel for you Terri. We've been in this position before too. I'm not sure there is a solution. Nothing is black and white. Sometimes (not often) life stuff comes before medicine. Would stopping the TOBI early be an option? Ask your doctor what to do. Where TOBI is month on/off, maybe there is a way to stop early.

Unfortunately things don't happen like they do in the psych textbooks. Yes, he needs to be responsible, yes, he needs to know that medicine is important. He also needs to know that you are on his side and want him to be able to enjoy his vacation.

 

[candiebar76]

My sister tells me that even tho my son is not "normal" we have to let him grow up at some point. This is a difficult realazation at this time because he is only 6. She also says letting him take responsibilty for his own actions and consiquenses of those actions is all part of it. Easy said then done when you know those consiquenses may land them in the hospital. However, you son is a teenager and he will rebell, that is in their nature. My advice would be like everyone else. Talk to your Dr. On the other hand have him take it with him that way if he feels like he needs it he can do it. Also talk to the adult going with him and let them know what to look out for. That way he still gets his independence and doesn't feel like you are underminding his choice.
Candace

 

[anonymous]

Is there anyway to delay the start of the next 28 day cycle? I think it would be better to delay the whole cycle than to stop in the middle of it. Like Amy said, I think that could promote resistance.

 

[irishdavid]

My gut reaction would be to just let him skip the tobi. Your doc could probably give you two weeks of another oral antibiotic for maintance. By what you described it sounds like your son is already more complient regarding meds than a lot of other cfers his age.

<b>quote:
I would have your 14 year old sit down with the doc and have the doc explain what consequences could be of not doing meds.
end quote</b>

sorry amy but I think this could be a bad idea. If his doc is one of these you HAVE to do meds at all costs types it could turn him of the doc entirely which is NOT what you want to happen. Theres more to life than trying to avoid becoming resistant to antibiotics.

I think the real question is WHY he doesn't want to do meds while away? Is it because they take too much time? (A valid reason in my opinion <img src=""> ) or is it because he doesn't want to do them in front of his friends? If its the latter then I would encourage him to tell his friends about CF and explain why he has to take the tobi. Once explained I'm sure that it won't be such a big deal.

I didn't go on similar trips when I had the oppurtunity in school mostly for this reason and in hindsight I wish I had had the courage to just do nebs and physio and get on with it. (Going and not doing them wasn't an option as I would have been sick within a few days)

As others have said sometimes life stuff comes before medicine!

 

[JoAnn]

Hi Terri - As others have said - I would also suggest checking with the Dr. as to what modification he would advise. Either altering the start of the next TOBI course, doing 2 weeks on and 2 weeks off if possible then returning to the 28 on and off, or maybe adding the 5 on at the end. We actually ran into this problem when my son needed surgery and he was in a different Children's hospital that his CF team. They do not allow inhaled TOBI in their hospital. Jason missed a couple of days and his Cf Dr. made modifications accordingly. I think it is awesome that the children are so compliant. Indepentence is wonderful and teaching them how to modify when absolutely necessary is an important lesson. Best Wishes!

 

[NoExcuses]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>irishdavid</b></i>





<b>quote:

I would have your 14 year old sit down with the doc and have the doc explain what consequences could be of not doing meds.

end quote</b>



sorry amy but I think this could be a bad idea. If his doc is one of these you HAVE to do meds at all costs types it could turn him of the doc entirely which is NOT what you want to happen. Theres more to life than trying to avoid becoming resistant to antibiotics.

!</end quote></div>

well this is what Children's Hospital in Los Angeles does. So it's not a bad idea at all - it works successfully at that clinic all the time.

 

[farmfamily]

Thank you for all your replies. I posted that question and then left town for several days and just now got back.
I had thought of delaying his TOBI that's what his Dr's had advised before. This time it is impossible.
As far as talking to the Dr's himself he doesn't he is almost rude at Clinic just getting through each appointment.
As far as why he doesn't want to; His friends are all very aware of his diesease but the last several years he strives to be like everyone else so much he doesn't want to do anything different. Typical teenager I know but I know he's rather risk his health.

Terri

 

[julie]

Just an idea, not sure if it would work or not.

Does he have a good friend that he's willing to have come over and the 3 of you could sit down together and talk about how important it is that he does his meds, and ask this friend if he could keep him company while he does them. If he feels supported by even 1 of his peers, it might not be such a big fight. A friend who is responsible and will stay back or stay in a room with him while he does his TOBI. To keep him company so he doesn't feel left out?

Also, maybe talking to someone in charge about letting him go into the "adult" cabin or somewhere private to do the meds for 30 minutes so others don't have to see him, or if he feels comfortable with 1 (or maybe even 2 friends) staying with him in that private setting, then he won't be alone. .

Mark had a good friend, actually the are still best friends, that would tell him when he was younger, "we can't go unless you did your meds. We'll do that after you do your chest PT, I'll wait here while you do it. I'll stay with you while you do this medication". But most importantly his friend put his foot down and pretty much said, "we aren't going if you didn't do X". I'm not sure if Mark's mom ever mentioned to him how important the meds and TX was for mark. If she did, she probably mentioned it to him in private and asked him to not tell Mark they talked, but for some reason or another, he ALWAYS put his foot down about mark not doing his meds. I think that really helped him.

Good luck, this isn't going to be an easy battle regardless and it isn't going to be your last one either.

 

[JennifersHope]

Julie your post made me laugh, I am 33 and I have a really good friend that I went to school with, and she does the same thing with me, She always says to me We are not going out till you do your vest, I will wait with you while you do a treatment in the car. She is so good about helping me. I am usually the first to put my treatments off if someone is waiting for me or if I am late for something because I don't want to inconvience anyone. It is sad but true.. But having someone with me helps me a lot.... even if it is just chatting with them on the internet...

I think Julie might have a good idea about having a good friend wait with him, maybe buy your son something really cool that he can do while he is doing his treatment.. a new game boy game or something.

I think if all else fails, just stop the med early or start it later. I think developmentaly, your son as a teenager, needs to have some control over his life.

Jennifer

 

[farmfamily]

Thanks he does have a really good friend (friends for that matter)
Right now I am trying to give him as much control as possible and to take responsibilty. I know in a few short years when he goes to college the ball will be totally in his court


Terri