posted
My 7yo was treated with a 4 wk course of antbx when she was 2yo. Found 3 rashes on her leg that turned into bulls eyes. She seems fine, a little trouble concentrating while doing homework, but now I am worried. How and where do I proceed next?
Posts: 9 | From Damascus, Maryland | Registered: Nov 2005
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posted
No - the rashes were found when she was 2 yo and that is also when she was treated.
Posts: 9 | From Damascus, Maryland | Registered: Nov 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
So what is the worry? Have you had her tested via IGenex WB and all co-infections?
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Well - I hope there is no problem. I just found out that LD may not actually be CURED. Do I just wait to see if problems occur and then check with a specialist in this area. I want to be proactive and do anything I can as soon as I can. This is all new to me and I am not sure what I should do?
Posts: 9 | From Damascus, Maryland | Registered: Nov 2005
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Hard question actually and no simple answer.
If you do WB and it turns out positive in IgM class she is most likely still sick.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
If she has no symptoms, she may have been cured. People are cured frequently if they get early treatment.
Seems to me there is really nothing to be done now if she is OK. When that changes, then jump on it. Just my opinion.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
She is due for her yearly check up by her pediatrician. I guess I will see what he suggests, although depending upon what he says, I will probably take her to a specialist and have them do a WB test on her and wish for the best. Thanks to all - from a concerned mom!
Posts: 9 | From Damascus, Maryland | Registered: Nov 2005
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SForsgren
Frequent Contributor (1K+ posts)
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posted
There is no reason that the pediatrician should resist the Igenex test. That said, they might, but go in and say "My daughter was diagnosed with Lyme and I want to run the IGenex Western Blot and coinfection testing to see where we are". You should be able to get the test run.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Thanks a bunch - I will do just that! Until then - I will hope and pray - for my daughter and everyone else affected by this horrible disease.
Posts: 9 | From Damascus, Maryland | Registered: Nov 2005
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posted
What made you suddenly think she wasn't cured? Did she start having some symptoms?
I have a daughter who will be 4 shortly and she started treatment when she was just over 2 1/2. She is still being treated.
Her LLMD believes in treating until all symptoms are gone.
Trust your instincts!
If you plan to get her tested, I would call Igenex and they will send the test kit out to you.
Bring it to the appt with you and have the Dr. sign off and draw the blood (they may resist-be persistent). You want to do the blood draw early in the week - I think it's Monday or Tuesday.
Make sure to ask for a copy of the test results when you get them.
Good luck!
Posts: 441 | From USA | Registered: Jul 2004
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posted
Well, to be truthful - I always thought that LD would just be gone after taking the 4 week course of antibx. I just found out from someone that that isn't always the case. My daughter really hasn't had any symptoms that I can say that are from LD - growning pains in the legs (not pain in the joints), some back pain periodically, neck pain as well and I am concerned about her concentrating while doing homework (though she seems to be doing well in school) - nothing that kids don't normally have problems with anyway. I just don't want to miss anything that I could possibly catch at an early stage. I guess I am paranoid - but I am a mom and want to do all I can for her. I guess I am just not sure what to really look for and when.
Posts: 9 | From Damascus, Maryland | Registered: Nov 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
You are not being paranoid. Lyme Disease often does not entirely leave the body. People get well and may not have symptoms, but many of us believe that it is something we have to constantly work on even after achieving health once again (I am still working on that). You are doing he right thing to be cautious and have the tests done again.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Question - I have read so much and trying to make sense out of all this - but aren't there alot of false positives out there with the testing? Does that happen on the WB? If so, what do you do then? Just wait and watch for symptoms? I am afraid her pediatrician will try to shrug this all off and that I am just an overprotective mom.
Posts: 9 | From Damascus, Maryland | Registered: Nov 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I think false positives on a Western Blot are rare. If you look at CDC bands, there are possible, but if you research and look at the Lyme-specific bands, you can get a pretty good idea.
It tells you the specific bands you want to look at when you get the results. Don't just look at NEGATIVE or POSITIVE. Many negatives are positive if you understand the interpretation and according to the above, potential risk for false positives (though small I suspect).
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Scott & all - Thanks so much for taking the time to educate me on these things. I really appreicate it and any other info anyone has for me.
Posts: 9 | From Damascus, Maryland | Registered: Nov 2005
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posted
IMO a test for your daughter when she has no symptoms is pointless. Some people never develop a measureable immune response in LD. On the other hand, antibodies to many infections, including LD, remain in the bloodstream for a long time (some say 10 years!).
So if your daughter is tested, what are you going to prove?
If antibodies are detected, then that could well be normal because she had the infection and was cured. On the other hand, it could mean she still has LD.
If no antibodies are detected, that that too could be normal because she never developed detectable amounts when she was infected. It could also mean that what was there has reduced over time. It could also mean that she still has LD but has no measureable immune response due to previous antibiotic treatment.
So where does the test leave you, regardless of the result? No more certain one way or the other that your daughter was cured. And I am sure that you would not want to put your daughter through more treatment unless you were absolutely certain that it was essential.
To sum up, don't put yourself or your daughter through the stress of trying to find out - because you are setting yourself up to fail and increase that stress. You are not paranoid - just a good, caring Mum - but just be thankful that she is symptom free and reconsider in the future if that situation changes.
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Our son had severe growing pains as an 8 year old. They lasted over a year. When our prominent llmd read/ saw that noted on his symptoms timeline.......he smiled and winked when he said, "Right......growing pains."
There is a good lecture/powerpoint by a good llmd pediatrician on the lymepa.org site. You could read over her list of symptoms in children.
We all know how you are feeling......the worry.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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riversinger
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Member # 4851
posted
I think, too, that if there are no symptoms, that you shouldn't worry. Even if you got a positive test, how would you know how long to treat if there are no symptoms? The usual recommendation in late cases is to treat until there have been no symtoms for two months. What about if there are already no symptoms?
Not everyone has Lyme forever. Some people do very well with antibiotics, and they are done with it. If symptoms come back at some point down the road, then you might want to test and treat.
Lyme is much more treatable when it is caught early. Sounds like maybe your daughter's was. Yes, it is worth making yourself aware of possible symptoms. Yes, you should do something if there are problems.
But everybody has SOME aches and pains. If she is doing well, I would enjoy her growing, and be grateful that you got it early.
posted
In my opinion, the key piece of info would be details of her treatment 2 yrs ago.
You need to know if the treatment was strong enough to eradicate the bacteria. If not, the stronger spirochetes could survive & go dormant. Then the disease can flare up again.
What antibiotic was given? What dose per day? How much did she weigh at the time?
Do you have that info? ...or could you get it from your pharmacy?
She probably had Amoxicillin. In "Diag Hints & Treatment Guidelines...", the recommended dose for children is given under "Antibiotic Choices & Doses" on page 17. www.ilads.org/burrascano_0905.html Print a copy. It's 33 pages of excellent info!!
For Amoxicillin, he recommends children be given: 50 mg/kg/day divided into q8h doses
1 kg = 2.2046 lbs My pharmacist did the math for me: A 35 lb child would need about 800 mg per day divided into 8 hour doses. This is more than the typical dose of Amoxicillin that is prescribed per day for a child this size.
It's possible that pain in her legs, back, & neck and problems concentrating could be "normal", but I'm not sure that's really normal for a 4 yr old. I'm not a dr, but my 4 children & 8 grandchildren have not experienced this at such a young age. Some complaints when they were older, but not this young.
These problems can also be symptoms of LD. If she did not receive adequate treatment 2 yrs ago, then the Lyme could be flaring up again.
I recommend - Check it out! If your pediatrician will "think outside the box", take a copy of Dr B's "Diag Hints & Treatment Guidelines..." & point out the recommendations for treating children.
Have your pediatrician call Dr J, the wonderful Lyme Pediatrician in New Haven, CT. (I'll send you the contact info in Personal Message.)
I was told that Dr J recommends & prescribes 30 days abx for children with a known tick bite. I don't know how much he prescribes when multiple bull's eye rashes are present.
If you make an appt with a LLMD, the wait for an appt is usually several months.
If your pediatrician will consult with Dr J, then you'll probably have your questions answered right away.
My 13 yr old grandson has had Lyme since he was 7 yrs old. His only symptoms were occasional pain in one knee, occasional headache, major changes in his eyes, & he gradually developed symptoms of ADD. After years of no treatment, he was diagnosed with Lyme. Treated until all symptoms had seemed to be gone, but it flared up about a year later.
He is now seeing Dr J in CT every 3 months & will continue to do so for several more years. The people here on LymeNet shared info that will turn my grandchild's life around. His prognosis is good.
A mother is the best resource person concerning her child's health. Trust your intuition & check this out thoroughly while it's not a major problem. Follow Dr J's recommendations. He's the best in his field!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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It's hard to determine whether or not she is having an active recurrence of the lyme. But this is the way that I would try to rule out a recurrence.
If she has been fine all the while and then a sudden out break of the common cold in her school gave her a slight cough that may have been enough to trigger a new onset event of the lyme.
That, IMHO, is always dormant in the body. Think back and try to see if you can recall such an event or similar that may have weakened her immune system...
If she has not been tested in 2 years then by all means, if you can afford it have her tested again and also for co infections. Now that you may need to have it documented if things take a turn for the worse. And I pray that isn't the case.
I am an advocate of hyperbaric oxygen. So of course I will suggest that if she is forced to have IV antibiotics that you compliment it with HBO, If you can. It is non invassive, has minimal to no side effects and will help the Abx cross the blood brain barrier. (This is not intended as medical advise you must get that from your LLMD)
And last but not least please take her to a pediatric LLMD that can give her an evaluation.
Best Regards,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
CBB's advice is so very good.
Symptoms in children can be so incredibly subtle.
My own daughter, who turned out to be CDC positive for Lyme... in hindsight, when I look back at things I dismissed and didn't realize at the time were symptoms -- pains in her legs which I labelled "growing pains." A frequent 'creek in her neck' which I attributed to sleeping on it wrong... Headaches... And so on.
The final tip-off was knee pain severe enough to get my attention, but even then, she herself tried to attribute that to walking down a steep hill! (But I said, "Honey, walking down a steep hill should not cause you to be limping in pain forever, DUH!) She didn't want to have Lyme after watching ME have it, so kept making excuses for all her symptoms.
I would order an IGeneX IgM test (for present infection level)...the IgG shows past levels and you already sorta know how that one's gonna look. Take the authorization to her doc. Expect him to pooh-pooh the idea completely. But firmly and sweetly ask him to humor you. Then do a little blood draw and send it off on a Monday.
If she has positive Borrelia bands, then you are going to want to find her an LLMD, since it's likely that past treatment was not enough.
You are going to feel much better knowing for sure.
Children's symptoms are just too subtle and if the infection is present, you do not want to take the chance of her going through what some of the children on this board have gone through.
Please don't think you're paranoid or overprotective. I am in your camp and know exactly what you mean by love, worry, and watchfulness!! Please let us know. We care.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
WHile it might be a good idea to always keep Lyme in mind- it's also NOT a good idea to be paranoid over it, especially in light of the fact that we do not get paranoid over other stuff that is latent in our bodys for life.
Valymemom has soom good advice- Don't let worry take over.
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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posted
I agree totally with CBB and Michele & VALymeMom,
You have every reason to wonder about these aches and pains, and lack of concentration. Mom's notice these things, and I don't think you are being paranoid, just very observant!!
My 2 daughters, 12 & 17 were tested in 2004 after I got seriously ill with lyme and Babs, and my husband then diagnosed with lyme and erlichia. The had some minor symtpoms but they were BOTH doing very well in school.
They got tested and were seen by the lyme doc and guess what one has lyme, babs and erlichia, and the other lyme, bart and erlichia!!!
My older had some back pains off and on, and hip pains doing situps (??) for swim team.....wierd, swimming was grueling, but she was in top shape.....NO OTHER SYMPTOMS.
The younger, shin pains, and ankle pains off and on, but I attributed it all to playing soccer and basketball with some occasional injury. But she also had some problems concentrating in school.....but then I noticed word block...and then I got very suspicious.
They are both still being treated but yesterday they BOTH brought home distinguished honors report cards!!....All A's and one B for both of them!!!.....It was a first that they both did so well, and I can't help but thinking it's because they have been treated for one year and cleared out some of the crud in their brains......
Trust your gut !!
Gail
-------------------- Strength does not come from physical capacity. It comes from an indomitable will ~ Gandhi Posts: 562 | From Wellsville, PA, USA | Registered: Jan 2004
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NP40
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Member # 6711
posted
quote:Originally posted by lisamom: - growning pains in the legs (not pain in the joints), some back pain periodically, neck pain as well and I am concerned about her concentrating while doing homework
These could be lyme symptoms, certainly worth Igenex testing.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
Everyone has been so nice and extremely helpful on this site! Thanks to all who have responded - it has been a valuable learning experience I could have never gotten from just reading articles alone on the net. I really appreciate that so many people have taken the time to educate and support me in my concerns. Please, keep your messages coming!
Posts: 9 | From Damascus, Maryland | Registered: Nov 2005
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Dr. C in Springfield, MO, who has treated hundreds of Lyme patients, says false positives are extremely rare in his experience.
Posts: 75 | Registered: Aug 2005
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