posted
My daughter is an only child. She is 11. We have had LD and co-infections since 2007.
Because of her sensitivities to light and sound, and her headaches and complete fatigue, she has been in homebound education since the second grade.
Since we've been so sick, we rarely leave the house to do anything fun. It's more like a marathon to get through something social than is supposed to be enjoyable.
She used to tell me that I was the best mommy in the world. She always had to be in the same room with me, so much that she hardly ever slept in her own bed.
In the past six months, she has transformed from my little angel into someone who hates my presence. She stays in her room all day with the door shut. If I try to come in to talk to her, she tells me to go away.
Her lyme meds give her really bad headaches, even when I give her tiny doses. She always yells, "Why are you doing this to me??!!" when I make her take her medication.
She has told me that she feels so angry that she "feels like killing someone."
Is this the "Lyme rage" I've heard about, or just the fact that she is growing up. She started her monthly cycle a few months back (really young, IMO) and I'm hoping that I can attribute it to that.
I feel so awful giving her medication that makes her feel so badly. She lays in her bedroom, holding her head and crying, and I feel so helpless.
I don't know if its Lyme or hormones that has turned my little girl against me, or if she hates me because we are both so sick. Or because LD makes me feel so crappy that maybe I really AM a bad mom.
I order her every toy and electronic device she asks for, tell her how beautiful she is and how much I love her every day, and nothing brings a smile to her face.
I don't know what to do or say to make her feel better except that I love her so much, and to promise her that she will feel better soon. But she yells "You've been saying that for years and I'm still sick!"
I spend most of my day crying because we're sick or crying that my daughter can't stand to have me around her.
I don't know what to do!
Posts: 151 | From SW US | Registered: Feb 2009
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posted
I am going to guess that it is a combination! Just starting her cycle can really mess her up. I know for myself that the Lyme rage is real! Also, If she hasn't been diagnosed with Bartanella, I would test for that. When I started treatment for Bart, my rage got a lot better! Also, she is young and wants to be out with her friends, she probably is angry that she can't have a normal childhood. But she is young to be fighting a disease that requires so much of the victim! Also, if she has been treating for about 4 years or so, that is a long time to feel crappy and to constantly be on meds! I have only been treating for almost 11 months and last week I absolutely couldn't do it anymore so I went on a 2 week med break. It has improved my outlook so much, I am not sad to start treatment back up in a week. Maybe she just needs a little break. And if it is the meds that make her feel so terrible, maybe they need switched around. Also, she may be depressed. A low dose antidepressant might improve the situation too.
This is just whats coming to me at the moment. I hope some others comment with their thoughts too!
Posts: 265 | From Oregon | Registered: Aug 2009
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momlyme
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My son has times like this. He just turned 12. He is schooling at home too. It's hard to be the sick kid... and to not know when or if you are going to get better.
I think for children it is more difficult because they don't know how precious life is... they haven't lived long enough to know how much there is to live for. My son has talked about if pain is all there is for me... why go on fighting?
The school provides a counselor for him and I think he is better since I got that into his schedule. She comes to the house every couple of weeks.
His class set up skype so he can join them in class when he is feeling better. He has not done that yet... it's nice that they had the tech crew set it up so when he is ready, he can skype them.
He also uses skype to call aunty and cousins...
Human connections are important and being homebound is depressing!
Does your daughter go on the computer at all? My son is on facebook since he got sick. He can't go see his friends & family, so he chats online or sometimes he just writes an entry about how he feels.
Perhaps she would like a Facebook account to keep in touch with cousins, aunts, family members who could give her support?
More recently, since my son has been getting a little better... he plays a game called Treasure Isle on facebook. He asked me to be his neighbor and we play together, helping each other out. It's a small joy... every little bit helps.
Watch comedies together! Get a good laugh. I started a thread 'Favorite Comedies' a while back. A good comedy can get your mind off the pain for just a few seconds. Laughing is like therapy.
The early visit of her monthly 'friend' could be a symptom of heavy metals in her system. I read that in Andrew Cutler's book "Amalgam Illness."
Please look into HPU and parasites. They go hand in hand and have been the only thing that have made any improvement in my son's condition.
You are a great mom! You are doing everything in your power to make her well again.
Sometimes the only thing I can do in this unreal journey is to get on my knees and pray for an answer. I read positive books and pray all the time.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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linky123
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You are doing all you can in spite of feeling ill yourself. That makes you a hero, not a bad mom.
I have two teenagers and they can be the same way. It's so hard when they change from our little boy or girl to someone who doesn't necessarily want us around anymore.
I hope you and your daughter get some relief soon. There are some good suggestions in the posts above. We're all in your corner.
Take care and God bless.
-------------------- '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
You give her the meds, she is still sick, you are the only one around to take out the frustration on. Patience with a chronic disease is hard enough for an adult, imagine what it must be like for a child. Such a big chunk of her life being sick.
Is there any progress being made? Time to rethink the treatment?
Posts: 8430 | From Not available | Registered: Oct 2000
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momindeep
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My daughter was the same way...at 13. It was so sad and hard and I felt helpless to remedy the situation...I tried everything too, but to no avail.
Looking back now, it wasn't just one thing to "blame" it on...it was many.
The reason is not the issue, tho, here...it is her reaction to you and your help.
I tried to figure it out...tried everything to make her happy...love her to death, I do, but none of that made and difference at all.
What I think I should of done is this: It is a hard thing I will suggest here, and it would be your decision to do so. Leave her alone...and if you can bring yourself to do it...give her a break from her medications for a short while. I feel I should of done this for my daughter, but at the time I was so scared of what would happen if I did, I didn't try it and I regret that now.
My daughter is older now, and we have talked over the years about those hard, hard, times...she told me how sorry she is about it all, but also mentions she doesn't know why she acted that way. I assure her that is wasn't her that was lashing out, it was the Lyme disease, and that is the truth and she accepts that now after much conversation...she should not feel any guilt about it and either should your daughter because that would be even more for her to have to deal with in the future.
I cannot imagine being preteen, sick for a long while, not getting any better, and your mom is your life-line...it would be overwhelming...it would be devasting.
We have slowly worked it out...maturity is helpful and that takes time, of course.
She is only eleven, so asking her what course of action you and her should take is not really an option...but if you could turn a tiny bit of the control over to her, somehow, it could turn things around a little, perhaps.
If you could think of something that you could let go of, and give over to her, it could give her a sense of control in an out of control situation...hard to do, but it might be worth thinking about.
Sue
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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2roads
Frequent Contributor (1K+ posts)
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Such good answers.
In reading them all, some things really stuck out for me.
One, when Mom can't fix things right away that's a problem, a reason to resent. We are expected to be miracle workers. The flip-side is, when it's medicine time again and it was old two years ago, there's another reason to resent. I know my son knows he is not well, getting by, but not completely well yet. He has expressed frustration with "when". Also, he's sick of me throwing meds his way. We took a break primarily because of kidney function. But, his mood is better since that break.
Also, feeling empowered. Such an awesome idea momindeep. I think that could help out significantly. Find something to give her control of in her life. Maybe even in her medical care. She needs to feel like she can physically handle that responsibility, and it helps her remember she has choices over some things.
I would also try to give her knowledge without scaring her. Maybe she doesn't understand this illness as well as you think, and you could couple it with success stories for inspiration and hope.
There are a handfull of books out there about people undergoing treatment for Lyme. One addresses a mother that is ill and some of the feelings the family goes through over it. You too are sick, and that may open the forum for her questions and dialogue.
Maybe she is also angry because she is scared. Reading that you are not alone is always helpful. Maybe she can tap into a Lyme support group locally (on a day she is up to it) or on the cpmputer at home.
I wish a friend could stop by to say hello to her. What about a pet, something to cry and cuddle with?
Definitely assess other tick-borne infections, especially Bartonella. A drug change might well be in order too.
I used to think these infections were "a treat and be done with it" occurrence, but it is more a timely process that, when properly self-assessed for complete recovery and treated correctly to that endpoint, leads to wellness.
Hormones are vodoo as well. They can exacerbate the situation.
You are a great Mom. But, you need a listening ear too. Lymenet is home to many of us during this transition time. We try to listen and boost each other up.
Comedies, good nutrition, excercise are all needed.
I know she is really not up to excercise, but a little each day is important, at least per Dr. B. He would say to start small, but start. It might be a good aggression release too. Talk to her doctor about that.
Hugs friend. We are in the lifeboats surrounding the Titanic, and we're all in there together. You have help. It's still terrible, but you have help. There is a doctor listening.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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2roads
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PS-when I say you need a listening ear, I mean you need someone to hear you. Hugs
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Very good replies! I will pass on advice because I don't have children!
I know a little about this since I was sick as a teen too .. and I taught school so I know kids a little.
I would agree with taking a brief break. No need to even make a long discussion of it. Just ask her if she'd like to take a few days off (or a week maybe).
and yes, give her control over something
and yes, the periods are bound to be part of the deal .. and yes, depression can often go right along with this
If you can afford a counselor I would get one.
uh oh .. I said I wouldn't offer advice!
PS.. She really loves you .. she's just sick and tired of being sick and tired. You're doing a great job!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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kidsgotlyme
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This age is hard even when you are not sick!! Just remember that. Things will get better with time.
We are just now coming out of that hard age. 11-14 is a HARD time!
My daughter was sick at 11 but we didn't know with what. She started her period at that age too and it was awful.
If she is able, she really need some kind of outlet. We are in a homeschool group that meets once a week. It's so important to be around friends.
Of course, that would only be if she felt up to it.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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