posted
Just wanted to ask a question about kids and Lyme. I know that answers cannot be definitive, but an educated direction is always better than none at all!
I believe I must have had Lyme and/or Babs unknowingly when I was pregnant with my now 5-year old. He has not shown any symptoms or illness per se. He had very low motor tone at birth, but I believe his hypotonia is hereditary and much like his dad's physical style.
Now that I am in the thick of Lyme, I felt compelled to have him tested during his last physical. Labs were sent to Stonybrook in NY and Medical Diagnostic Labs in NJ. (That's where my LLMD sends my bloodwork too.)
His results came back negative for Bart, Myco, and Lyme from MDLabs; non-reactive for Lyme at Stonybrook, but also showed one band reactive -- #41 kDa for both IgM & IgG.
I responded to the recent post regarding #41 with a query. One poster said that if he were their child, they'd treat him right away. Other information posted suggests that other bacterias may affect band #41. Basically sounded like the possibility of non-reactivity was impossible to peg.
I also remember an older post about Dr. J not treating asymptomatic kids. Yet I can't wonder now if my poor little boy is going to be a ticking timebomb. My older boy is also asymptomatic, but now I think I should have him tested too.
My LLMD doesn't treat children, but was kind enough to give me testing kits for both my boys upon my request.
Does anyone know anything more about one band positive stuff? Now that I have this sketchy testing info, I can't help wonder if minor sniffles or earaches or the current bout with pink-eye are harbingers of doom rather than little immune systems learning the ropes of childhood illnesses. Don't want to get crazy but....
Any thoughts would be appreciated.
Thanks and Best to you and yours,
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I can feel your concern and I would be thinking the same thoughts if I were in your shoes.
I also know what it is like to have to look at someone each and every day and wonder. NOT good.
You have two choices from what I can tell.
1. Continue to guess and wonder about it... letting it upset you and negatively affect you.
OR...
2. Take them both to Dr. Jones NOW for a good look-see. If he can't make a determination... no one can.
The benefit to this is the fact that once they are seen and are his patients... if you WERE to have a situation where his advise was needed... you would have the best of the best at your service.
Another benefit.. it might ease your mind to know IF they have it and IF anything needs to be done or not. And.. if they have it and he says not to treat... he can say what to watch for in the future.
I think the peace of mind would be good for you.
And the complete work up would be good for them. Dr. J doesn't only know Lyme... he is a great childrens doctor for other things too.
posted
I am going through the same thing with my two kids.
7 year had two positive bands and 3 IND on Igenex. I think symptomatic (chest pain, palpatations, esophagus spasms- all very infrequent)
4 year tested positive on Lab corp. Did two months ABX
Went to See Dr J.
He said I did not give it to them that they were both bitten by ticks that carried the bacteria but did not develop lyme.
He said my son's sympotoms could be explained by growing.
We are taking him to opthomologist today to check eye issues.
I have to say I was relieved but am very skeptical.
He assured me that unless they were bit again, they would not develop lyme.
This is the opposite of what I understood. Actually, I am conviced I was bit a long time ago and my Lyme was dormant.
So yes, i am the same as you. I freak out whenever my kids complain of ANYTHING and still wonder if I should treat my son with ABX....
THere is one thing that keeps me sane, the idea that we all always make the right decisions. Even if the results were not what we had hoped, it means there was something for us to learn.
Good luck
Posts: 368 | From freehold, nj | Registered: May 2007
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
i very heartily agree with Tincup, and urge you to go to Dr. J if that is at all possibile for you.
My husband and i just did Ignenex Western blots for our 5 year son; he is very positive for Lyme.
I think his is congenital Lyme, but in any case, I have been incredibly watchful of his every sneeze since spring 2006 when i learned i still had active Lyme.
Watching and not knowing and worrying is incredibly stressful. We would have been better off, and so would our son, if we had just gone ahead and had him tested/gine to Dr. J at least 6 months ago, and better, the moment after i knew he COULD possibly have Lyme.
Yes, the positive result hit us hard, but i have to say it that relief outweighed that feeling. Finally i can stop watching and start DOING something to help my son.
by the way, even being that watchful, it wasn't until i KNEW he was positive that I reran memory tapes and realized i had missed lots of clues he gave me that he WAS symptomatic.
thinks like saying pretty often that his legs were too tired to walk down the stairs in the morning.
each time i thought he just wanted me to give him a piggyback ride down, which is what we always do, except for the days when i am too tired or too wobbly to safely carry him. nope, he really couldn't, poor guy.
knowing is definitely best.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
It breaks my heart to hear that any little person is having to deal with this.
My daughter was bit but did not show any Sx. My MD is treating her with Doxy. She herxed quite badly.
She only had one band positive(old inf.)He feels that it is better to treat if there is even one band positive than to let it progress. I feel that he made the correct call with my daughter.
Looking at her med Hx it looks like she had actually had this for quite a while and our old MD just did not address it. (he believes no lyme in NC) Stomach aches, head aches, irritability, lack of focus, and "just feeling yucky" now we realize these were Sx not just her trying to get out of school as old MD suggested. In reality, she did have Sx, just not new ones.
Every case is so individual. Bottom line is, you need to do what feels right for you and your family.
Hoping you find the answers that you need.
Wishing you and your family all the best!
-------------------- Every victory, no matter how small, deserves to be celebrated. Please excuse me while I do a little dance. Posts: 25 | From North Carolina | Registered: Jul 2007
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posted
A heartfelt hug of thanks to everyone for responding
I just googled Dr. J's info and will be calling on Monday. I will also see if I can run the testing by my own LLMD (doesn't treat kids) for words of advice.
You are all right. I need some credible assurances or I'll get crazier. Time to have both kids tested with as fine a fine-toothed comb as sketchy testing instruments will provide.
I feel so fortunate to have you folks to bounce ideas with...truly blessed. We are each other's peace-keepers.
Much love,
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
good luck tomorrow with your call to Dr. J! I'm glad you're calling!
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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