posted
I just found out all four of us are positive for the big L..I am so sad..Bad enough to think my husband, but now my 8 year old son and my 6 year old daughter have it.
Dr. C says don't treat the kids because they don't have active symptoms, however I am starting to re-think my son's situation.
He has some mild ADD symp. and his head is always in the clouds, as if he is just somewhere else (brain fog???)
He- at 8- is always falling down, really clumbsy. I have always thought he just is a spaz,(said with love) but now I am re-thinking he might have balance issues???
His worst problem****** is his speech! He has been in speech class for 4 years, and is just not getting any better, but seems worse!
All of these seemingly, minor problems seem worse sometimes and better at other times???
I don't know...I don't want to create new problems, but don't want to ignore possible future ones either! He is a great kid and does well in school so far.
It's a whole new perspective for me when I think of this nasty bacteria in my babies! Me and this whole nightmere I can (sometimes) take, but not them!
Would love any insight, especially on the speech part! Laura
Posts: 232 | From MN | Registered: Jul 2007
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posted
Well, if he has those issues, he's not really symptom free.
My daughter had headaches and learning disabilities. Once in a while she would get a sore knee. She has gotten better with treatment. It hasn't been that hard on her because she wasn't physically ill like I was.
She had herxes, but they weren't disabling .... she'd still go to the pool, etc. Mostly, she just gets grumpy and moody ... but she's also going through puberty.
Our LLMD is using neuro-psych testing to check her progress since she didn't have a lot of physical symptoms.
My LLMD considered it the lesser risk to give her a trial of abx to see what happened. Since she responded to treatment, we continued them. But he also agrees that you don't need to treat someone without symptoms ... in fact, I didn't even have the other kids tested.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thanks for your insight six goofy! I knew you'd respond...Yeah I guess he really isn't symptom free- I forget he also gets occasional headaches too. but- AGAIN how do you know if that's Lyme or just odd quirks of a normal body..Ugggh, so frustrating. Laura
Posts: 232 | From MN | Registered: Jul 2007
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posted
Yes, it is frustrating. That's why my LLMD did a trial of abx. Her test was borderline .... just an IND on a Lyme specific band and 41 +. When we retested her after abx, she had a couple more IND's on Lyme specific bands.
The thing is, she started feeling much better on the abx, and had clear herxes. So, that was our confirmation that we were doing the right thing. Her headaches went away early on.
It's a tough call .... but I'd rather not wait till she gets sicker .... plus her schoolwork is going so much better, her teacher was teary-eyed telling me about it at the conference. Drastic difference in school!
I felt like a month of abx was less dangerous than letting Lyme progress. But it's a hard call that you have to make with the advice of your LLMD.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bettyg
Unregistered
posted
we have the PERFECT person for you to talk to in SUPPORT, GENEAL, a speech pathologist with lyme!
look for 1 of her posts there and then send her your link to YOUR post; she innfo plus helping folks!!
so sorry to read the your entire family has lyme!
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posted
Laura, I just wanted to say Hi and let you know I am praying for you.
I too have a son 8yo with speech problems and oddities that make me wonder if he too is Lyme pos. like me.
I have 3 children and plan on testing them if my LLMD thinks it would be a good thing to do.
Right now I'm just trying to get my head around my diagnosis.
Take Care.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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posted
Hugs to you and your family. You can read about my story in my blog, but in short my whole family is also lyme positive. My 2, 5, and 9 year olds are just about to finish up treatments. They have suffered no ill effects from this long road of treatment and I don't believe I have ever seen them herx. But its harder in children since they don't communicate their symptoms as well. I always wonder about what's going on with them on the days they are a little more sensitive or fussy. My dh is about half-way through tx and I'm really just getting aggressive.
Again, hugs, treating multiple family members is expensive and exhausting. I wish you the best.
Posts: 101 | From USA | Registered: Apr 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I am so sorry to hear about your family.
Even though I knew in my heart, I was still devestated when my
Children's Igenex results came in.
As a Speech Pathologist, one who had major difficulty in speaking,
Prior to dx. of Lyme and treatment,
I would say that Speech production issues can definitely be Lyme related.
Given the statistics that for every one girl in Speech Therapy there are 5 boys,
One could easily say it is not uncommon for boys to need speech therapy.
However, based on my experience with Lyme, I know that I have
Never had difficulty talking or finding words prior to getting really ill with Lyme.
Write down a symptom list.
Prior to my children's LLMD visit, I did a pretty exhaustive search
On young children with Lyme and congenital Lyme.
Strange objective things like my son's ears turning red
For no reason, could be attributed to Lyme.
He (4 yrs old) has been in treatment since May and this no longer happens.
For a child to regress instead of progress in Speech Therapy is very unusual.
Speech apraxia can cause this, but Lyme can cause that.
Get a symptom list together. Mark down everything you
Currently see and things you've noticed before.
Unfortunately, you may be suprised at how many symptoms children really exhibit.
I (at first) thought my children were parroting my symptoms.
Boy was I wrong.
Hang in there. My whole family is infected too.
Take a deep breath. Absorb what you can and then go after treatment for your 8 year old.
I have noticed drastic improvements with my two children.
Please feel free to PM me if needed.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I needed this post too. My oldest tested and positive with an array of symptoms, some seems even worse than mine. My youngest only shows some symptoms like you are talking about Laura and i keep calling her asymptomatic
yet it doesnt sit well in my throat when I say it because she has SOME. I have not tested her but expect she will show a stronger positive than myself and my oldest. I think in some ways I am trying to keep my head in the sand with it.
I dont want them to have it....but I KNOW at least one does. I dont want my youngest to go through what my oldest and I have....but even last night out of the blue she started complaining about her knee again. She even went and got the crutches
to walk around the house with it was hurting so bad. I sit and look at her at 10 yrs old and KNOW there are plenty of clues in front of me but know a dr would call her asymptomatic and treatment would be hard to get.
Do we wait until it gets a hold???? Isnt it too late once it does? Seems more logical (the more I have thought about it at least, I keep coming up with this conclusion) to use the aid of the immune system that seems to be doing a pretty good job on its own and add tx to that and kick
it!! Doesnt that make more sense than to wait for it to become full blown and fight an over active load?
I am not a dr but it just comes up as more logical! IMO...
So much easier make choices for ME than for them in this regard because I have the insight within my own body to know what is going on and with them I dont. Somehow I think we have to be able to separate the emotional connection of THIS IS MY CHILD and find a way to deal with it as if it wasnt
if that makes sense. I guess I should ask myself....if it was my best friends child and she came to me and asked me for guidance and direction because she was overly involved emotinally and couldnt make the best rational choice...what would I say to her? And take the
same advice for myself.....
It is hard, Laura....so very hard...
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
Thanks to everyone's replies...This is so frustrating, I just want to cry! I am having a very emotional day today anyway.?.
After hearing from all of you, I guess I really am going to move forward and treat. But I instead just want to go hide in my bed with a blanket over my head and pretend like none of this has happened.
Oh well we must move on, huh... Thanks again to all of you replies. I will pm some of you as I get closer. Laura
Posts: 232 | From MN | Registered: Jul 2007
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posted
My heart goes out to you and your family. There are 9 of us so far. 4 are my children.
To me they don't sound symptom free. I will PM you a question.
But not to hijack your post but alot of you spoke about speech issues.
And I have a question about that.
My 12 year old, mostly neuro lyme. Also has several coinfections. Very athletic not the aches and pains my other 3 have. He is congenital and also had tick attachment on his head around age 5.
Neuropsych test showed frontal lobe issues.
Anyway, my question.
I have taken him everywhere and no one seems to know what causes it. But he will be speaking and all of a sudden he is like a record that skips, it is just for a second, it is like a qlich, like his brain just shuts off for a second. It is not a stutter or anything like that. My husband and I noticed it in 3rd grade. He is now in 7th. I talked to the 3rd grade teacher and she listened and noticed it. Then she went to his 2nd grade teacher, 1st grade and Kindergarten and they all remembered it.
I was so mad!
I couldn't believe it had been going on for so long. Both Dr J and Dr C said it would go away with treatment but so far it hasn't. And I don't can't even find anyone who has ever heard of this.
Thanks MOMS!
Lyme x 9
Posts: 399 | From Texas | Registered: Apr 2005
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Does your son squint his eyes or pucker his lips when he has his (glich,skip)? any other facial or body movements when this occurs, or is it isolated?
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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posted
I honestly can't answer that. I am usually driving or not looking at him when he does it.
I have tried to not make an issue out of it. He is my popular, athletic, handsome, confident kid and I don't want to add any pressure on him.
It was one of his friends (since preschool) on student council last year that said he sounded like a record that skipped and for years I had such difficulty describing it. But that is what it sounds like.
Thanks for listening I will try to watch, Lyme x 9
Posts: 399 | From Texas | Registered: Apr 2005
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