posted
My son who is almost 5 was just dx by lab tests for Bartonella. We suspected, of course, but haven't dropped the cash for co-infection tests until now.
So, my LLMD prescribed levaquin. 250 ml, once a day.
I understand the tendon issues can be worse in kids, but I also read something about bone density.
What should I worry about. . . .bart makes me a bit of a worrier.
I'd love to hear other people's experiences with kids. Is Rifampin preferred?
Posts: 564 | From Tick Hell | Registered: Oct 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I thought it was against the law to put a kid on levaquin!!!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Levaquin is usually not prescribed (and not approved) for children under 18.
Have you tried other medications like Rifampin, Zithromax, or Biaxin? If not, maybe you could try one of them first and hold off on the Levaquin as a last resort.
Posts: 5237 | From here | Registered: Nov 2007
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posted
No, it isn't against the law. many drugs are not approved for kids and still given.
I am waiting until I see an LLMD who does more peds. My LLMD hasn't treated a kid this young with lyme. She sees them for regular GP stuff though.
Anyone else?
Are all those treatments for Bart? I need to get James Schallers book. ASAP. Anyone have one to sell me?
Posts: 564 | From Tick Hell | Registered: Oct 2008
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Can you contact the LLMD that you are waiting to see to clear this with him/her? Or have your GP contact Dr. J in CT for guidance?
I've read multiple times that Levaquin shouldn't be given to children due to the tendonitis issues and that is why Rifampin is preferred. Levaquin is definitely preferred in adults for Bart but not children.
I don't know anything about the bone density issue you mention so can't comment on that. What have you heard? Is this pertaining only to Levaquin or Rifampin?
My child has Bart and is on Zith, Mino, and Rifampin. I've heard that Biaxin and Bactrim are also used with children.
I hope your son gets relief soon.
Posts: 648 | From northeast | Registered: Feb 2009
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posted
MY LLMD is a GP for other kids. She is going on vacation on Thursday and I am seeing the other LLMD that we consult with on Tuesday. I'll just sit tight and wait to see what he says.
My LLMD is fabulous, but not very experienced. How old is your child amomwithhope?
Posts: 564 | From Tick Hell | Registered: Oct 2008
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tickbattler
Unregistered
posted
Hi peacemama,
Sorry your son has bart. My three young children (5 year old twins, and 2 year old) see Dr. J in CT. All of them have bart, among other things.
Dr. J started them all on bactrim for the bart. This was paired with azitrhomycin to go after the lyme. As we discovered two of them had babs (noticed night sweats a few weeks into treatment), then Mepron and artemisinin were added. 4 drugs at once! But they are getting better.
The bactrim helped a lot at first (for first 5 months) but now two of mine have switched to rifampin due to new bart symtoms coming to the surface.
I know one of mine has at least two different strains of bart (showed up in testing), so my guess is that the bactrim worked on one and now the rifampin is working on the other. We have seen great improvement with rifampin for him.
My other one seemed to flare (get worse) on rifampin for 8 weeks and we didn't notice an improvement until biaxin was just added one week ago along with the rifampin. OCD symtoms are slightly improved.
Dr. J told me that bactrim and rifampin work equally well on bart. He also said that biaxin works on both bart and lyme. He has never suggested levaquin for my children and I think I recall that at one of our first appointments he said they shouldn't take it at such a young age, but I am not positive about that.
If it were me, I would NOT give levaquin to a child that young. I have not heard of it being done and I have done a lot of reading on lyme/coinfection treatment in children.
Good luck with the other LLMD--it's great that you have access to two LLMD within the same practice--awesome!
I do hope he can shed some light on the Levaquin issue, and please keep us posted on this for future reference/knowledge.
Before your next LLMD appointment, I suggest you goggle Levaquin to see what comes up regarding its use and side effects and see what you find.
I've read repeatedly that it should not be used with children under 18 due to the possibility of it damaging developing bones, joints, and tendons.
But your LLMDs will most definitely know more than I do, so trust him/her over what I know.........I'm still learning myself.
Unless your son's symptoms are specifically needing whatever Levaquin would resolve, and since you mention that your LLMDs are somewhat inexperienced, perhaps you can do a trial on Rifampin plus Zith or Mino first and see how he does?
Or have them consult with Dr. J--most docs are willing to consult when outside their expertise. Perhaps Dr. J will agree with the Levaquin, and you will be good to go.........
What are your son's Bart symptoms?
My daughter is 12.
Good luck and keep us posted.
Posts: 648 | From northeast | Registered: Feb 2009
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posted
I am in awe at people who get through to Dr. J. My LLMD has tried countless times and she has NEVER talked with him. They just tell her to have her patients make an appointment.
I can't do that.
My LLMD's are not in the same practice. One is 2 hours a way, and I have seen him once for each of the kids. He has more experience. He recommended flagyl for my 12 year old, and that freaked me out. He recommend zith as well.
We started instead on zith and omnicef, from a recommendation from someone whose son goes to Dr. J.
I wish I was well funded and could see Dr. J. I'm already considering selling my house, getting out from under it and moving into an apartment so we can pay for the supplements we are all on. I don't know how people do it.
I don't think anyone will agree with the levaquin. . not from all the research I'm tapping into.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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posted
I don't know much about this topic but would be concerned about giving it to him at that age with those possible problems.
I also don't understand how people can afford Dr J. Especially with several kids. I have 2 kids sick. I wish we could but it would bankrupt us for sure!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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tickbattler
Unregistered
posted
Actually Dr. J does not recommend any supp's besides probiotics. So we don't spend much money in that area...I know that can get very expensive.
My kids have been in treatment for a year now and I have given them probiotics 3 times/day, fish oil and a multivitamin. One is almost well, the others now have very few physical symptoms. Still have psych symptoms in one of my boys. But they are all getting better. Their labs are getting back to normal.
I don't think you need a consult with Dr. J if you have several protocols from patients who see him. Your son is the same age as my boys...why not just copy the protocol for lyme/bart if that is what your son has?
With regard to your son's protocol...Dr. J told me that both zith and omnicef go after lyme primarily. I think zith can hit bart but not nearly as well as rifampin or bactrim. You might consider asking about a protocol of zith/bactrim or zith/rifampin. My kids have been on both under Dr. J.
Dr. J believes that you have to treat the lyme and coinfections at the same time. Many LLMD's do not do this, but Dr. J's approach is working with my kids, so I'm a believer in this approach.
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