posted
If you have any input, I would appreciate it!
My congenitally infected daughter will be 17 next month. She was vaguely "not well" from age 4-12 and then very seriously ill from 12-15.
Happily, she is now symptom free and has been off antibiotics for seven months. (Which in and of itself is totally amazing, given how sick she was!)
The problem is her total denial about her health. The doctors and I believe she is suffering from post-traumatic stress. She refuses to utter or hear the word "Lyme" or anything health related.
She is in a good position health-wise now, being symptom free and her CD 57 is 209. However, her IgM Western Blot is still positive and we all know that she is in remission, not cured.
She will no longer see our LLMD because he really got in her face about her denial, which was not very productive. She has been seeing our local LLND who has been trying to establish a rapport with her. She doesn't want me talking to him or in the appointments, but he and I do talk regularly (which she is beginning to figure out).
He just wants her to remain on a few herbals, a multi-vitamin and probiotics, which I have been leaving out for her daily. Lately she has not been taking them. She wants to be done.
As for me, I worry about her constantly. I am up to my ears in my own treatment (finally) and I'm pretty fragile; not the best state to be in when parenting a teen.
She wants to go away to college next year, but probably most likely will spend another year at home. I don't know how far to push her about continuing to see the LLND and to take, at the least, probiotics. I have declared our house a gluten-free zone.
I feel like I can't be the kind of parent she needs right now, because of my own health. Her father is here, but he works a lot, they argue constantly and he has never really stepped up to the plate to help with her health care and I think it is unrealistic to think that I can get him to start now, when I couldn't do it when she was so sick.
So that is my dilemma. Thanks for reading this long post. Any thoughts?
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
So, so sorry for your troubles...
It is one of the hardest ages imaginable for someone to get ill is during the teen years.
It was a massive, dynamic struggle with my daughter over some of the same issues that you are faced with and we were in the thick of it between 13-22. (My daughter just turned 25).
My daughter flat out refused to see her LLMD at about 21 because she was so sick and tired of being sick after many years of treatments from various doctors...so at least your daughter is better...mine was still ill when the refusals began...and she actually started digging her heels in at about 16...and just about everything from that age on was a huge, gigantic, struggle and argument.
I will tell you this, you probably should quit talking to her LLND behind her back...she is figuring it out and it is going to become a full fledged issue if you continue...I KNOW how very much you want to keep tabs on this, but you cannot do that and not have it blow-up in your face...sorry.
I had to actually take my hands off of my daughter and her health for awhile and it just about KILLED me...it was a very difficult thing to do and you wonder...how can a mother DO THAT?...and I will tell you that it was necessary for the long run to get the golden ring.
I had to revert the control to her, and she did nothing much for her health during this time, even though I was very scared the whole while...but as time went by, and my daughter matured, she came to see that I was in her court and she came around.
It was a living hell for a couple of years...it was beyond upsetting, but I stuck it out and my daughter did some soul-searching and she did a complete 180...we got in touch with her LLMD and she got right on board with his protocols and she is much, much, better these days.
You cannot carry this worry on your shoulders...even a mother who is well cannot tolerate such stress and you are ill yourself.
Those pills sitting out for her each day is her rebellion...she can refuse to take them and she does...it makes her feel in control even if it is negative.
Don't leave the pills out anymore and don't say anything about it either...just what I have learned over the years...sometimes the more you push...the harder they push back.
She will come around...I would celebrate her healthiness!!! I would celebrate how well she is doing!!! I would celebrate that she has goals and is thinking of the future!!!...give her sometime to settle down.
Good luck to you.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
4 Seasons..Good luck for both of you. It is Hell.. Have lived thru it and only on icy footing at the moment.
Thank God for partial remissions...It has continued to get us thru while she is in refusal mode for most meds and drs..Also thank God for acne and some bart or whatever cysts that reoccur on her face..It keeps abx in her.
Some good advise from mom in deep but since our worst symptoms were suicide attempts, I never stopped getting dr advice..Just did it descretely. lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Thanks for the warning ladies.
4seasons--when did you find out your daughter had lyme?
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
We found out she had Lyme at 12, when she got extremely ill.
Thanks, Momindeep for the wise words, as usual.
I have been celebrating her healthiness and getting less worried with time. And I really don't want to drive a wedge between us. It's so ironic that we spend so much blood, sweat and tears trying to get them well and then they won't take care of themselves.
I am aware, also, of how hard it is for teens to be sick at the very time they are supposed to be separating from us. My daughter was bedridden and needing around the clock care at age 13 and 14, so she is making up for lost time.
I have been traumatized, as well, by everything I saw her go through. I am recognizing that I continue to see her as a victim, and it's not doing her any good.
As hard as this is, I am so grateful that she has her health now. .....I just want it stay that way...
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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posted
The relationship between teen girls and their mothers is a slippery slope to begin with, throw in chronic illness for either or both and it could be treacherous.
For myself and my daughter who is 14 1/2, I try to stand back and let her make decisions (or at least let her think she is) most of the time. It lets her feel like she is in charge and I think it teaches her about her choices. If she makes a bad one and gets a bad result, she can't blame me.
This teaches her to think about her choices and how to deal with the consequences. I don't let her run wild, I would never let her do something that is dangerous and I do give her guidance, but she feels more like she is in charge. It's hard for me to watch her make some not so good choices, but it's good for her IMO.
As for leaving the meds out for her, I might just fill up a pill organizer for the week for her, leave it for her and let her decide to take them or not. I would do this unless she has a medicine that is necessary for her well being, this I would make her take.
This is just all my opinion, I'm not telling you how to raise your kids. My parents think I am a weak, pushover, but my mom is a total control freak and still tries to tell me how to run every aspect of my life and I'm 43...
-------------------- Down on her knees, she wept on the floor. This hopeless life, she wanted no more. Dead in the mind and cold to the bone, She opened her eyes and saw she was alone. ~Seether Posts: 427 | From Rhode Island | Registered: May 2011
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I just want to give you a hug and tell you that I know exactly what you've been through with your daughter. Mine got ill at 11 and is now almost 15.
While mine seems to be getting closer to remission, we're not there yet, but she too is being more vocal now regarding what she will take and won't take regarding treatments etc.
She also has forbid me to tell anyone that doesn't already know she has Lyme that she has it. I can completely understand--she just wants to be a normal kid--something she wasn't able to be for over 3 years.
I think stepping back for a bit is a good idea. Your daughter is well now so let her just be in the moment for a while (very hard to do as a mom, I know!)--when the memories of all the abx she has had to take etc., starts to fade, she'll be more open to starting up again with the probiotics and other supplements.
In the meantime, if she is staying close to home for another year prior to leaving for college, that gives you a chance to really watch her and confirm that all is good in her recovery.
Congratulations on her return to good health!
Time for you to get well now!
Posts: 648 | From northeast | Registered: Feb 2009
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I know how hard it is worrying about your dd, I am famous for worrying about mine!!! Unfortunately there is not much you can do that you haven't already.
It does sound like your dd could have PTS. It can take a long time to find a place to breath and emotionally heal after going through such a long illness and I think its only natural for her to want to ignore the issue. She needs the psychological space away from it so that she can come back and deal with it all. Only she does not know it.
She is probably seeing you as a reminder of her pain and I believe that the best thing to do is to try to replace her association between Lyme and you with something else. Support- her way. I am pretty sure that she knows she needs to pay attention to her health but she just can't. And she associates you with having to face the truth so she is just going to reject your advice no matter what you say.
I know that it feels impossible because you are struggling through Lyme yourself, so how could you not be a reminder of what she went through and... your heart is breaking.
However, maybe tell her that you understand that she needs to have space from the Lyme topic right now and that you are going to hand it over to her, ( I like mom2's idea about the weekly organizer). And most importantly you are there for her whenever she needs you. I think that kids this age just need to hear that we are proud of them and that we respect their decisions even if they are not making the right ones in their lives. Once they know their parents are behind them in that way I think they are more likely to make the right choices. Luckily, she is well enough so that she has some wiggle room until she does.
Being a mom of a chronically ill child is so deeply difficult especially when we have to step back when it is clear that they need us the most.
Also, don't forget you are probably experiencing a form of trauma due to your daughters illness, plus your own. You have been through so much! So maybe giving yourself permission to step back, (if possible), will benefit your health as well. I know, I know, easier said than done!!!
I am fairly sure that I will be faced with the same issues when my daughter, hopefully, goes into remission. Most of us probably will.
I hope everything gets easier and that you feel better soon.
posted
Thanks to all of you for your sage advice. No one understands quite like you do.
Last night I told her that the ball was in her court. Her probiotics were on the refrigerator door and her vitamins in the cupboard. I told her that I had listened to everything she said and that I was here if she needed me.
I think she is still having one Bart symptom - subcutaneous nodules on her hand, but she insists they are a normal thing that happens to people all the time. (sigh)
I do feel like our relationship has been sabotaged by docs who have told me one thing and then said something different in front of her when she pushes back. When I question that, she thinks it is my agenda, when truly I am wanting them to follow through on what they said originally.
I can't escape the feeling that it is only a matter of time and that it doesn't have to be that way and, yes, that breaks my heart. But I do fall back on how lucky we are to be here now and I'm trying to stay in that moment.
Thanks again for listening, all of you.
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
I have two teenagers, both in remission. We went to Germany two years ago and were treated by Dr. W. with the Bionic 880.
I was very sick, and probably would be bed-ridden by now.
They had sx, but not anything that bad. My son was the worst, with problems concentrating, tremors, poor sleep, and fatigue.
My daughter had problems with fatigue and lung problems, asthma, and chronic infections.
Both were functional and able to go to school etc.
Dr. W. tested them both and they were positive. He told them they would be very sick in a year or two. He said I was about ready to crash.
So we went through the tx and are lyme-free for now. Maybe if they had been sicker when treated, it would have made a difference; I don't know.
My son turned up with a tic recently - popping his jaw almost constantly. So I got the Bionic out and after two or three tx it was gone.
He was in denial as usual and said it was just a nervous habit.
They are both in denial about the whole thing, and say when they leave home they will never go see another doctor.
I know how you feel; they can make it quite diffficult when all you are doing is trying to save their lives.
I will pray for you and your daughter and hope she comes around and stays sx free. Keep us posted on her progress.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Sorry about Dr W. I knew better. Guess it slipped.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
I have a student who told me this-- and it really knocked me on my behind. He is SO right. . and as a parent of a sick teenager, I didn't want him to be. The more I let go of forcing my kid to treat. . the more he comes to me when he wants to up his treatment.
So. . here's what he said. He is a very wise 18 year old. I asked how long I should let my sick kid stay out at night. . .he REALLY needs his sleep and I fight with him about it. So. . although it isn't directly about treatment, I saw so much wisdom in it.
I hope it helps you.
I basically agree with Noah. Set a curfew that works (but break it for awesome things like movie premieres or sleepovers) and make sure he'll be safe. Aside from that, let him set his own limits. He will, presumably, be living on his own in a few years and will have to manage his time, energy and safety every day. The more practice he has the better. Maybe when a kid is 10 you have to set limits, but 15 is plenty old to make these choices and learn from them. If he was failing school and going to raves this would be a different story, but I think the chances of that are slim.
In my experience the main limits do is harm the parent/child relationship. I just don't think anything you would gain from restricting his out and abouts would be worth that. Talk to him if you think he should spend more time at home/studying/resting, but let him decide for himself. In a few years, he'll have to.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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