My teenage son is in denial about being ill with lyme disease. He fights me at every turn about his treatment, medicines etc.
I am thinking of showing him 'Under Our Skin' to show him the realities we face. I also have lyme and am much 'sicker' than he is.
He already has anxiety, depression, and severe sleep problems. I am not tolerating the abxs well at all, and he knows that.
I don't want to hinder his treatment by adding to his anxiety, which is severe.
He already knows lyme can be fatal, but doesn't seem to think that applies to him. Anyone have any advice? I don't know what to do. Thanks.
Linky
Posted by Blackstone (Member # 9453) on :
Has he actually gotten diagnosed by a physician?
If not, that may help. He may need to hear it from someone outside his home who is impartial.
What other symptoms does he have? Fatigue, brain fog, joint pain, muscle pain, rashes etc..?
That said, its very very difficult for a young person to adjust to chronic illness. I was unknowingly infected when I was sixteen (From 16 to about 22 I was diagnosed with chronic fatigue syndrome). Having to realize that you can't do the fun things that other people your age do, wondering why, and trying to get through an incredibly difficult high school curriculum (I graduated with honors, but within a week of missing too many days to not allow me to pass!).
The first thing to do is ensure he gets a good diagnosis from a LLMD. This is not made to seem offensive, but we have a tendency to see lyme everwhere we look, and anxiety depression and sleep problems can be caused by just being a teenager Make sure it is really Lyme or a TBI and get a physician to plan out how he is going to get it under control.
If at all possible, get him a plan or disability tutor that allows him to never have to attend school. I believe they're called "504 plans", but I'm unsure of the particulars. That will take a lot of stress off of him, while still allowing him to pass.
Right now, seeing you sick probably scares him. He might be lashing out, because he doesn't want to believe he could have something that would make him as sick as you are. He's seeing his entire world go down the drain at an age when it should be opening up. Let him know that the faster he gets treatment, the faster he will recover.
Posted by linky123 (Member # 19974) on :
Hi Blackstone,
Yes, he has been diagnosed by a prominent llmd. He has a double-positive western blot from Igenex, and a CD-57 of 45.
He has tremors, severe sleep problems, anxiety, depression, fatigue, inability to focus, poor short-term memory, oppositional behavior, anger issues, loss of appetite, weight loss.
At age 10, he got into a bunch of seed ticks at camp, had numerous tick bites, developed three EM rashes on one ankle and one on the other.
The pediatrician put him on doxy for two weeks, probably not long enough.
In addition to that, I gave birth to him while infected with lyme. I didn't know I had it at the time.
He's had problems since birth. We just didn't know until lately that it was due to the lyme.
So we're pretty sure he has lyme and the doc thinks a bartonella co-infection.
So far we are managing to keep up in school, with a little summer work the school is allowing us to do at home. He is going into 9th grade, a tough time for a kid.
It's amazing you were able to graduate with honors with all you had to deal with, but so sad to have it taken away due to a 'technicality.' So sorry to hear that. Take care.
Thanks.
Linky
Posted by Blackstone (Member # 9453) on :
Ahh all right. I think most of the end of my post could be part of the issue, then. You may wish to look into additional plans to give him some relief, as things change big time in high school - more pressure, more deadlines, more classes and so forth. Acquiring a 504 plan or whatever your district offers can take quite awhile, so its good to start early. The system will almost never tell you they're available, you have to inquire.
9th grade is a tough time, and I can't say it will get easier. Teachers drill it into a kid's head that you need to have a 4.0gpa, top SAT score, and hundreds of hours of extracurricular activities. This is nothing to say for his social life and whatnot, going out with friends, meeting a significant other and finding time for all that around school and his lyme treatment. Get him all the "bonuses" and "outs" his condition allows him, to make his life easier. Be supportive, even though its hard. I can thank my parents for dealing with me as a teenager.
Posted by linky123 (Member # 19974) on :
Blackstone,
Have you seen the 'Under Our Skin' dvd? If so, do you think it's too big a dose of reality for him right now? Or would it help him to see the unvarnished truth?
Looking back on your experience as teenager, would you have handled it alright. I am torn.
Linky
Posted by Looking (Member # 13600) on :
Non-compliant teenager -- aren't they all?
At this age they seem to pay more heed to what their peers think. Is it possible to find someone close to his age diagnosed with lyme from a lyme support group nearby?
Maybe hearing how lyme affects another teenager will make an impression.
Hope you find a way to get through to him so he can take an active role in his treatment.
Posted by linky123 (Member # 19974) on :
Hi Looking,
We don't know anyone his age with the disease, but that is a good thought. I have heard of a support group here, whether it includes teenagers, I don't know.
Thanks for the suggestion. I will definately look into it. Thanks.
Linky
Posted by adamm (Member # 11910) on :
Well--I'm a teen and could produce my story if you wanted me to. Just PM me...
Posted by Blackstone (Member # 9453) on :
Linky - You know your son better than I do and I think it comes down to how you think he'll handle it. I've always been medically inclined and of the "The more knowledge I have, the better I can approach the problem" mindset. It certainly would not have phased me, but then again I've never really gone through a non-compliant phase.
I would not ever advise hiding the reality of the situation from him, but I think how you present it will be important based on his reaction. Make sure you let him know that this doesn't have to end up that way, but you want him to be compliant so that he has the best recovery possible. I would not advise too much "doom and gloom" or scare tactics, as then he may feel that everything is hopeless. Concentrate on the positive and give him a wary look at what could happen, but that he's lucky to have a LLMD and a mom who knows what he is going through at such a young age.
Posted by mjbucuk (Member # 843) on :
I have a 17 yr old w/ lyme babesia bartonella. It sure isn't easy for him... or for us, his parents!
Thinking of you!
Posted by linky123 (Member # 19974) on :
Thanks everyone for all the advice, we sure do appreciate it and all the great folks on this site. You are truly a lifeline for us! God bless all of you. Take care.
Linky
Posted by bettyg (Member # 6147) on :
linky, you didn't say what age he is as a teen; how old is he?
yes, i feel he can see under our skin.
adam volunteered as well to be a contact for you. adam, is there a teen group of lyme patients? i thought my info once had one...perhaps they became inactive. I FOUND IT; listed below....
504....here's info galore from hshbmom/etc who have compiled this!!
EDUCATION - Lyme discrimination law geneal, 8-22-07 http://idea.ed.gov. It is Public Law 94-142; Free and appropriate education for all children.
and in case it applies, for women with lyme who are/want to be pregnant AND for moms who have kids born with congenital lyme. (doesn't seem very active, but maybe check archives if nothing else? http://health.groups.yahoo.com/group/PregLyme/
From Calif. Lyme: Remember Mike Cunningham who died on Xmas Eve 2006, leaving his wife Kim & 4 kids under 7? He was a neat guy. This is his daughters site!!! For Lymed kids. A nice site!!!! http://www.pattyknack.com/kidsindex.html Posted by linky123 (Member # 19974) on :
He is 14, going into 9th grade. Thanks for all the info..very informative, and thanks to adam, I sent him a pm too.
I just worry that he will be even more anxious about losing me. He internalizes things, so it's hard to tell. But we know he has major anxiety.
thanks for taking an interest in us!
Linky
Posted by winterbug101 (Member # 19422) on :
My daughter was 14 when she was diagnosed. She is now 17. It was her first few months of 9th grade when she was diagnosed. She was able to go to school but went in late, extremely tied. The LLMD and I both believe she has babesia, bartonella and lyme.She went on IV in the summer after finishing her 9th grade year. She missed so much school in 10th grade that the school would not give her A-B+ grades. She choose to stay back and she is currently finishing her 10th grade again with A-B+ grades. She could have gone on the her Jr. year but not with the schools grades just pass fail. My daughter felt cheated since despite feeling so sick and tied she worked through Christmas and spring breaks to catch up, do the work and earn the grades. Attendance was the issue for getting her grades. My daughter too is noncompliant a lot of the times. It seems as though she doesn't want to accept her illness. She is also angry that despite almost 3yrs of antibiotics she is not better. I see the difference but she seems think she is not better. I would have preferred my daughter be home schooled to eliminate the stress of school. That year she was out she created a distance with her friends. She most of them. It was her decision to return to school this past fall. I had a home school instructionsl program in place. I do think it is important for you to allow your child to make as many decisions as possible because it gives the child some control . I found my daughter was happiest going to school even if it meant compromising her health. I worry A LOT. I try to accommodate my daughter in every way that I can but also set limits when she either stops her meds or doesn't want to go to the doctor. I take away her cell phone. That works for me most of the time. All I can say is PATIENCE. Sometimes I don't have it because it really is overwhelming to deal with an illness, especially yours and your child. Don't give up.
I hope I provided you with some help. Winterbug
Posted by MysteryGirl44 (Member # 10201) on :
Hi! I'm so sorry for everything that you and your son are going through. I agree with what Blackstone said. I'm 15 and I have Chronic Lyme and Bartonella. Your son can always feel free to talk to me if he wants to. It helps to talk to people who understand.
Good luck! Posted by Marnie (Member # 773) on :
I wish I had a video tape of my son's reaction when he got out of his first 20 minute bath (using 4# of Epsom salts and 1# baking soda in a soaking tub filled with warm, not hot, water).
He went from feeling really bad (mentally) to happy as a lark.
REALLY. It blew my mind! The change in his mood was astounding.
I swear I am telling you the truth!
My son looks to have a genetic problem which is related to too much arginine, *too little lysine*.
If I was in your shoes, I'd BRIBE him to try that bath. Is there a DVD/CD he would like to have?
Then...when he does feel better (and I'm pretty sure he will)...
Seriously consider trying the what I call the "Magic Five" nutrients.
The "magic five" includes: 2 anti-oxidants (to reduce the inflammation) and 3 critical amino acids.
IMO...it is sure worth a shot!
On its own to reduce brain inflammation, OmegaBrite WILL help. This is an ester of one of the omega 3s (EPA) and is very high. You can order it over the internet. It is not cheap, but IMO...worth every cent.
A lysine deficiency accentuates EFA deficiency.
We NEED the omega 3s!
And in lyme, there sure looks to be a lysine deficiency (among others!).
Lysine has to be in balance with arginine.
A deficiency of lysine alone impacts soooooo much.
"Bribes" aren't all bad, sometimes they are necessary.
"If you clean your room, you can use the family car tonight...sort of thing."
Posted by Amy C (Member # 19297) on :
Both my boys have congential Lyme. Ages 10 and 13.
My 10 year old spent the last quarter of his this year at home with a tutor. He missed his last few months of elementary school!
My 13 year old will also be in 9th grade next year. He didn't want to miss his last few months of 8th grade because he would have missed a lot of important things. So he tried to tough it out.
So our LLMD wrote a medical excuse for him to miss days and be late when needed. He also can't take gym class. The school was fine with that.
As for next year I don't know what we are going to do yet? They both have troubles waking. My youngest has insomnia. My oldest can get to school but misses almost 1 day every week and a half.
Also my oldest doesn't want to be involved in anything to do with Lyme. He doesn't want anyone to know. He just wants to take his meds and get better. We did some news interviews lately and he didn't join us.
But my younger son is like my poster child for lyme! He tells everyone! He also tells people about prevention and helps me do Lyme presentations at scout groups. He hammed it up on the tv news interview! LOL
I think it must be the age thing for the older children. They don't want to be different. That is my guess.
Amy
Posted by peacemama (Member # 17666) on :
My son has a new ning site:
lymeplayground.ning.com
He is 12. He has a 504 plan. He can't keep track of his own meds, and lord knows I can't do it for him.
We struggle. A lot.
They need more members over there. It is all kids, plus SixGoofyKids as an angel, I believe.
Posted by Peedie (Member # 15355) on :
A support group could help.
I think there should be a forum here just for teenagers. They need a support group of their own. Their concerns, fears and outlook is different - and let's face it - we as parents - they think we don't KNOW anything!
Maybe buy him a book regarding Lyme treatment and start sharing bits of information everyday to get him more engaged in treatment of his illness.
Good luck and best wishes peedie
Posted by Lymepool (Member # 15827) on :
My teen is 14 and one of the big dilemmas is figuring out what behavior is due to illness and what is due to being a teenager. Your school district or pediatrician may be able to help you locate support groups for youth with chronic illness or a psychologist that specializes in the field. We've found this to be very helpful. Learned lots of coping tools and techniques to work through the health issues, relationships with friends, etc.
Best Wishes,
Lymepool
Posted by linky123 (Member # 19974) on :
Thanks everyone for your posts and interest in us. We will check out all suggestions.
So many of our kids struggle with this. Having to miss out on the fun things they do at this age is tough, as well as trying to deal with school issues.
It is overwhelming isn't it? My prayers go out to all of you and your family members.
You are all a blessing to us!
Linky
Posted by sixgoofykids (Member # 11141) on :
Check out the KPU/kyrptopyrroluria/pyroluria thread. You mention anxiety/defiance. Dr. K has found that 80% of Lyme patients have KPU, which can cause psychological issues. Maybe if the psych issues were more under control, he'd be more compliant.
I know the KPU treatment has helped me tremendously .... and my family notices, too.
Posted by Tracy9 (Member # 7521) on :
I feel your pain. I went through the EXACT same thing with my son, who is now 19. During his last two years of high school in particular, he could NOT get up for school. He could however make it by 4 pm to his part time job at Burger King.
The school felt if he could do that, he wasn't really sick. I couldn't get them to understand that mornings and evenings are like different time zones for Lymies.
He improved on his own this last year and a half, but still has fatigue, brain fog, and pain.
For some reason, he has suddenly come around. I can't explain why; maybe a combination of seeing his younger brother get diagnosed and get a PICC line, maybe seeing both Mom and Dad with a PICC, maybe maturity and realizing he DOES want to get better, maybe the fact I told him I was NOT taking no for an answer and he WAS going to get treated.
Who knows...and I know this is of no help....but he is on board now. We just got his CDC positive test and Bartonella positive test yesterday. He is off for MRI and SPECT next, and most likely IV abx.
I wish you luck; if you can get him to join the new site for kids, that would probably be the biggest thing that would influence him. I'm going to get my almost 14 year old on there.
Posted by linky123 (Member # 19974) on :
SixGoofyKids,
Yes, I checked out the recent KPU thread, after looking at the symptoms, I definitely think it's a possibility.
Do most llmds test and treat for this? Or do we have to use another type of specialist?
We see our llmd. on Tues, so I will mention it to him, and see what he says.
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