posted
I am sooo angry and soo worried...I just figured out by counting the pills that my daughter (18) has NOT been taking one of the meds Rx'd at her last LLMD visit. She has looked me in the face every day and told me that she is taking everything (Biaxin, Zithro and Artemisin) but I see she has not taken the Artemisenin (sp).
She has complained that she's sick of being sick all the time and can't stand taking so much medicine every day, and while I can hardly blame her...I can't believe she's donme this. I am scared about her future and recovery and frankly shocked that she could be so reckless!
Posts: 217 | From New Jersey | Registered: Apr 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I feel for you, Elle.
My daughter, 15, is the exact same way. Though she doesn't even bother lying about it...
Here's what happens: When she's having a big problem, like aching knees keeping her from soccer, she'll take her meds faithfully.
Soon as the problem's better (and she does seem to respond fairly quickly!), her compliance plummets.
Then I have to rag on her. It's not enough to say "Don't forget to take your meds." I will actually lay them out for her and say, "Take them WHILE I AM STANDING HERE, as in NOW!!" Because otherwise, she'll shove them aside and there they'll be in the morning... sigh.
I am going to ask our LLMD to give her a stern talk on the matter.
I am also going to narc her out to the doctor, with the admonition that if she continues to lollygag on her meds, he won't treat her anymore. And if HE won't treat her, who will? Like the next time she has a really bad flare and is limping, how would she like to hear "Tough, I can't treat you because you're noncompliant."
Sigh...
They do think they're invincible.
I wish you luck. ...Teenagers...!!! GAH!!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Well that probably says it in a nutshell!! Thanks, Michelle. I am going to take your advice and "force" her to take them when I'm right there.
Haven't done so thus far because she was never non compliant in recent times and, probably most importantly, since she pretty much sleeps 18 hours a day, she's not awake when I leave in the morning and I work 6 days a week. I'll figure somnething out tho...
Interesting idea about narcing your daughter out to her LLMD...I think (hope) that he might be savvy to teenagers, though, and keep working with her... but the threat seems a good one.
Posts: 217 | From New Jersey | Registered: Apr 2007
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bettyg
Unregistered
posted
Elle and Michelle
narcing is called TOUCH LOVE; you're doing the best for them; some day they will appreciate your sticking your necks out. NOT now; but someday.
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
This problem isn't just with teenagers.
My five year old and four year old hate the taste of zithromax!
They aren't allowed any desert or TV unless they take their medicine.
We've had some horrible crying bouts/tantrums, etc.
I am firm about taking medicine.
Can you take the car away? Cell phone away?
I would much rather reward good behavior than bad, but
My kids have to take this medicine.
This is their chance.
I don't want them to go through what I do.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Oncea again, I feel for the young ones and the teens with this condition.
AFter taking meds since Feb. 2003, I myself am non compliant at times.
I did have one med that I had to keep putting off taking as I was trying to move and couldn't seem to do anything at all while on it.
The next time I saw my LLMD, he changed the med so that solved the problem.
AS I was reading these posts, I thought perhaps coming up with a positive reward might help.
This includes us adults. HA!
And there are times when taking an abx holiday have helped me when the head stuff gets to be too much or lowering the dosage. (neurotoxins?)
I hadn't thought of how hard this must be on parents and kids and teens.
Got an email from a friend who is about 2 years ahead of me in treatment the other day.
She was dx early.
She is going to Europe on vacation soon. She has gone from being bedridden, not being able to go to church, or to water therapy to being able to go to Europe and almost symptom free.
That helped.
Perhaps having other's their age that have overcome this talk to them will help too.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
I have a 19 year old, and she is pretty compliant to the process. But, I can understand your daughter being overwhelmed.
Your daughter may be herxing so bad it's really taking her down. If she is getting the zith and biaxin, she is at least getting SOMETHING in her system.
I know the art made me depressed, so it may be affecting her that way, as well.
First thing, in my opinion, is to get the communication open again where she doesn't feel she needs to keep things hidden.
Call the doctor and ask if it would be okay to take the art one or two days a week. Or, maybe pulse it, five days on, three days off. Let her know you are listening to her cry for pain. Let her be part of her own healing plan.
Agree that if she feels she decides not take a medication one day to tell you. Better yet, have HER call the doctor or nurse (she's 18, she needs to get used to doing this) and ask if she can modify her Rx intake based on herx symptoms.
We have a saying in our support group: Kill the Bug, Not the Patient. This is a marathon,not a sprint.
My daughter was soldiering through horrible herxing, and we were tearing her stomach apart in the process. We have backed off and made it more managable. She is making more progress because she is feeling better.
If it's because she "just doesn't want to take so many pills", that's not a valid excuse and tell her you will bring it up at the next doctor visit.
posted
I am 19 years old myself, so I sympathize with all of your children...Its really hard sometimes. I am on IV meds, so it would be kinda obvious if I wasnt hooked up to my pole but, I am also on about 50 other meds, including supplements, seizure meds, nausea meds, pain meds...the list goes on...and frankly, if I dont feel one of them is helping me after a month or so, I do stop taking it, sometimes I feel that a lot of the meds give me side effects instead of helping me, so I try and avoid taking it (until Mom finds out) lol. I think its a great idea to discuss it with her doctor, because if shes not taking it due to lack of it helping her, or bad side effects, those are good reasons.
I hope she feels better! Posts: 29 | From New York | Registered: Aug 2007
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Cobweb
Unregistered
posted
Geneal- maybe the olive oil dip will help the medicine go down. It sure worked for me and flagyl-no bad taste at all-slid down smooth-I've never taken Zith.
Well-I pulled out the right to Veto her petition to stop treatment on my now 16 year old, C. Especially since she came back from New Orleans with a big fat tick in a Tylenol PM bottle. Sucker is still alive .
C was trying to tell me it wasn't attached for very long (less than a day she thinks))-so I asked her what's kept it alive for over a week. She answered -my blood?
BINGO! baby-and that gives me the right, as your parent, to insist on treatment. You have been overruled in your non-compliance.
She doesn't think her previous lyme treatment was helping her (all of three months worth)-so she elected to stop-and I let her-hoping she would get sick and tired of being sick and tired and become a willing participant in her treatment. didn't hapen.
At least I have leverage now- you cooperate with me and I will cooperate with you.
She just got her learner's permit, and needs 60 hours driving time with me, AND once she gets her license she will want to borrow the car.
So - each pill will earn her a half hour drive time, I take that back- 15 minutes behind the wheel. No I think I'll make that a minute per pill-she could be taking a lot of pills.
I did learn in her driver's ed class that the part of the brain that connects decisions/actions with consequences has not even develped in the teenager's brain yet.
More leverage for my making decisions for her-like taking her meds-since she was at the same dirver's ed class she knows her brain is not fully developed. We won't mention my lyme brain's ability to make decisions.
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Been thinking about this this am. Noticed I have not taken my meds in the afternoon the past two days.
I think the thing is to figure out why and see if there is a solution.
The vit C I take is too big so decided to ask someone to cut it in half so I can get it down.
I actually feel worse lately after taking meds and supplements so that is most likely why I have not taken the pm ones.
Perhpas between the two of you and the doc you can do some brain storming.
I like what you said Kelmo. Brain, vision, processing is so weird right now can't recall it to quote it here.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
elle,
I am not trying to undermine you or your daughter but wanted to mention...
Artemisinin is the hardest thing I've taken. The stuff packs a wallop (darn, don't know how to spell that)!
I have stopped it temporarily so I can get some stuff done.
I am 50; please don't tell my mother.
It's definately worth talking to the doc and seeing if she can start with a lower or less frequent dose. I have an easier time tolerating it at half strength.
If I could say it well enough I would have liked to say what Kelly said.
Geneal, I have taken liquid Zith as I was given samples and figured at teh cost; why not?. It's really nasty. Your little ones deserve dessert for getting that down.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Liquid zith is nasty. I heard liquid flagyl is even worse and that is coming.
I like the pill for driving time solution.
I am sometimes in "rebel" mode too.
I think on a subconcious level that I am trying to find something/anything to
Have control over in my life. I forget meds (never have before), miss supplements and even
Probiotics at times. I think it is my mind's feeble attempt to establish some form of
"I am really in control here". I do realize it is a fantasy.
Those ketes are really in control and until I kill those little boogers, I am just
Skating under the illusion of what I really have power over.
I believe this applies to my children as well.
Trying to establish some independence in a chaotic situation.
I would expect teenagers to be worse.
I like the idea of positively rewarding myself.
Maybe a massage for taking 30 days worth of meds without missing anything.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Geneal..
With all that is going on...I'd award a massage to you for getting through the week.
Good for your health and good for the moral.
I have been trying to think of little things to balance life out a little more too.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Wow! I just got back online and saw all of your responses...thanksfor the support and the suggestions.
Can't take away the car because her neuro issues have made driving all but impossible...so she still has her learner's permit..darn!
BUT.. she is an artist and doll collector and yesterday I made going to the paint store contingent on her taking her meds first...so at least I feel I'm on the right track.
She HAS gotten more depressed lately...and her issues are centered around frustration over being FINALLY in treatment and still feeling like %&%*&%...so I keep reassuring her that she will eventually feel better.
Wish I could get her to post here, too. Sigh.
But anyway, yesterday and so far today, she's been 100 percent compliant...so far, so good.
Posts: 217 | From New Jersey | Registered: Apr 2007
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Thanks for bringing up this topic. It must be really hard with teenagers.
The responses have helped me as I realise that I am not alone! I have previously posted a similar topic on a British family doctors forum and the response that it was all to do with affirmative parenting. I felt duly rebuked and an ineffective parent!!
My ten year old has been on meds for 15 months and now that he is much better (ie healthier) he is starting to refuse to take them.
Zithromax suspension is the main problem at the moment. He doesn't like flagyl suspension but at least that is only for 3 days a week. Actually he won't take branded flagyl but will take a generic version (called norzol in UK - made by rosemont).
I tried him on septra but he couldn't bear the aniseed flavour and haven't tried a different brand. Unfortunately there is only one brand of zithromax.
Negotiation, rewards and witholding of priviledges do help in varying amounts. But I have to be fair to his 12 year old sister too (not too many rewards else she complains and too many treats withoeld is unfair on him..... you know the usual family dramas).
I do let him have a day off from the zithromax every 6 days (each bottle lasts that long) as I know this drug has a fairly long half life so I don't think too much is at stake.
The other issue is probiotics. I don't give these to him with abx for obvious reasons but then it seems like every meal time involves medication. He will take a yoghourt based probiotic drink but I don't like to push this.
It's so hard - especially when you feel they have been through so much with the illness. My sympathies to all of you (and your children) but it helps to know we are not alone.
Chiz
Posts: 67 | From UK | Registered: Oct 2006
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posted
I am 20, and am on IV, and over 30 different meds and vitimins... oh and now shots in the leg every day. I have no problems taking my meds every day, waking up early in the morning to take them. But I think this is because my lyme has been so bad for me my whole lfe, I am just so happy to finally know what is wrong with me and to be on meds.
The only thing i do not feel like being to complient with is the shots i just started 3 days ago. If I could get out of this, I would! I do not like the way they burn like a lighter is buring my skin! yuck.
Honestly, you need to tell them how lucky they are to know what is wrong with them and how lucky they are to be on meds. I am sure they know how bad tickborn illnesses can get, and if you do not take your meds properly, the longer you have them, which gives the bugs just more time to reak havoc or move onto a more vital system in your body.
You can never get better from 'halfa$$ed' med taking. If they stick to the course, they will get better and never have tot ake them again, but like this, they will always be taking meds. The only thing i can think of is to remind them of this every day.
I really feel for you parents out there who have to get a child or young adult to take their meds. I am sure that is probably one of the hardest things to do in life... getting children to take medicine.
I wish you all the best of luck with that. My heart goes out to you!
As for the person who started this post, you said your daughter was well enough to play soccer! Thats AWESOME! I can see why she does not feel like taking her meds even though she still needs to. Honestly, the only thing i can think of is scare tactics. Tell her a story or two about the people with lyme in wheelchairs. I do not know how morally right it would be, but when you are talking about the health of a young adult, its SOOOOO important she take her meds so she can get over this and move on with out major worries about it still being able to strike her ill again.
Again I wish all of you the best of luck! and your children the best of heath!
posted
As for the person who started this post, you said your daughter was well enough to play soccer! Thats AWESOME! I can see why she does not feel like taking her meds even though she still needs to. Honestly, the only thing i can think of is scare tactics. Tell her a story or two about the people with lyme in wheelchairs. I do not know how morally right it would be, but when you are talking about the health of a young adult, its SOOOOO important she take her meds so she can get over this and move on with out major worries about it still being able to strike her ill again.
....actually, it wasn't my daughter who is well enough to play soccer!! I wish she was. She's been sick for 11 years and spends most of her time in bed or at least in her room.
She has not had a normal school year since first grade. Pasrt of the reason she was rebelling was that she's been intreatment since June after finally being diagnosed...and she feels worse now than before...
I keep explaining about the Herxheimer reaction...but since she's had so much bad medical care...its hard for her to swallow that her LLMD isnt just another doctor who cannot get her well.!
Posts: 217 | From New Jersey | Registered: Apr 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
When my daughter starts a new antibiotic, I do a search on this forum and print out all the information regarding everyone's experiences.
When she starts to feel lousy, she can read through the messages and feel in good company.
Posts: 2903 | From AZ | Registered: Feb 2006
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I am so sorry she is not dealing with treatment well. I just assumed she was not feeling too bad or she would be more willing to take meds to get better.
I feel for you. This is such a hard thing to deal with as a parent. Does she have a reason for why she is not complient with taking the meds?
Maybe her doctor can explain the extreme importance of taking her meds to get better?
I guess you can just keep reminding her that everytime her symptoms get worse, all that it means is that you are closer to getting better. For me, the herx is exciting. Its a reminder that I am getting better... although they are So not fun.
Perhaps her unwillingness to take the meds might be due to some emotional issues she is dealing with? Finding out you have lyme is just as hard emotionally, as the lyme is physically on you. Perhaps she is dealing with issues of facing she has this illness?
This is just so serious, I really hope she will start taking her meds. I feel for you and your daughter. Lyme is hard enough to deal with, and this on top of it just makes thing even more stressful.
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Elle and Michelle ![[Smile]](smile.gif)
but, I am also on about 50 other meds, including supplements, seizure meds, nausea meds, pain meds...the list goes on...and frankly, if I dont feel one of them is helping me after a month or so, I do stop taking it, sometimes I feel that a lot of the meds give me side effects instead of helping me, so I try and avoid taking it (until Mom finds out) lol. I think its a great idea to discuss it with her doctor, because if shes not taking it due to lack of it helping her, or bad side effects, those are good reasons.![[Eek!]](eek.gif)
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