posted
Okay, this is making me so scared and now directionless...
My now 4 1/2 year old claimed her leg hurt since last year. During one of visits to my wife's llmd, I mentioned to him and he agreed to put her on azhithromycin. She took that for 4 months. She stopped complaining after a while and we let her stayed for a little longer. Good, right?
Then the complaint came back after a few more months. He then put her on cefdinir for 3 months. During that time, she stopped complaining after a month on cerf. I thought she continue for 2 more months and it should be good. So the total was 3 months.
Well, she stopped the med again in May. Last night she complained again...
What do I do now? And this is very discouraging...
Posts: 822 | From midwest | Registered: Apr 2009
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Oh wtl, I'm sorry to hear this. You have enough to worry about with your wife being so sick. I don't want your sweet child to have to suffer too.
Your question is not easy to answer. From what I have been told, it is supposed to be normal for children to experience minor aches and pains as they grow. But then I would not expect the pains to be severe, immobilizing, to occur every day, or last for over a month or so.
Does your daughter play very hard, does she participate in sports? Do her legs seem to be growing straight and properly? Does she have a normal walk or does she limp, walk on her toes, lean to one side more than the other?
How is her diet? Does she seem to get enough calcium and vit D? Some people do not absorb these nutrients well.
Do the leg pains always happen in the same leg or same area or is it generalized where both legs hurt? Does she have any other ill symptoms along with the pains?
Start thinking about these things. Watch her closely. If she continues to have pain you may want to take her to a trusted pediatrician (or back to Dr.H) to be evaluated. Lyme is a very real concern but it is not the only thing that could cause pains. You want to find the true cause to treat it properly.
Hugs to you and your sweet little girl. I'll be praying that the pains will pass and not return.
Posts: 5237 | From here | Registered: Nov 2007
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She is pretty normal of all things, except her occasional complaint about her leg pain. She in general is playing pretty hard but she does not participate in any heavy duty sports. She runs all day and no limp. She complains pain on both legs, but not all at once, meaning she would complain on one leg at one time and maybe the other the next time.
The last time she came with us to Dr. H's office and he did not think she has Lyme. He and his PA both think it was growing pain.
Maybe I am just paranoid from what I have witnessed my wife and how fast she goes down. Maybe I just keep watching.
Thanks, sammy. How are you?
Posts: 822 | From midwest | Registered: Apr 2009
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posted
My 4 year old is very similar with the leg pains. I would NEVER have thought lyme until I got so sick. We have pulled ticks off of him, the most recent was in June.
He has leg pains (mainly at night), "burning feet", sometimes he will just fall down...like i'm so exhausted fall down (but don't all kids do that??), neck pain here and there, and lots of tummy issues. Also, one of his eyes is weaker than the other...we're having that rechecked soon. He is skinny/small.
My very well-known LLMD says he has lyme and to get him treated soon...his labcorp test shows bands 39 and 41 are positive. LLMD says I don't need to do Igenex test, he is positive. 39 is enough to diagnose.
We are in the process of finding him a Dr. who will treat him here locally. I have to travel to see my LLMD and he will not treat children under the age of 8.
Even though I'm not 100% sure he has lyme, I would rather be safe than sorry...and I trust my LLMD's opinion. He has been treating lyme for years. I am terrified for him as well, but better to know now than later on in life. I am very ill and would never want this for him.
I think you should trust your instinct...hope she feels better soon!
Posts: 618 | From NC | Registered: Oct 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Hows the white count. My daughter did this after a vaccine.
Her white count bottomed out and she could not walk...
I got it up by giving her shiitake mushrooms in everything she ate, lots of vitamin C, and yogurt.
It took 4 weeks to get to normal, and another 2 to get to good.
Doc had her tested every week for the 4 and then 2 later.
He asked how I did that! And shook his head...He thought he was going to have to do a bone marrow. While he offered nothing but time to get over it(whatever IT was),
I became proactive and searched for immune boosters on the net...There may be a lot more options now. That was 12 years ago.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
Sorry to hear this wtl...I have three children that age with lyme and coinfections so I know what you are going through. It is hard not knowing. I would get her tested through Igenex ASAP to see if she has any positive bands which would prove exposure to lyme. That would be a starting point. You can use EMLA cream to numb the area before having the blood drawn and she won't feel a thing. My kids never cry when their blood is drawn b/c they don't feel it.
Dr. J didn't think my 3 year old daughter had lyme b/c she looks as healthy as a horse. But I knew her few symptoms were suspicious. She would wake up grumpy and would be itching all over. She would wake up crying many times at night. She also would complain of ear pain sometimes and headaches and occasional leg aches. Dr. J agreed to do a trial of abx and eventually we knew she had it b/c her coinfections tested positive after 6 months of treatment. She never had a positive lyme test but later had positives for babesia microti and duncani and also bart henselae.
I would be very suspicious about the leg pains. You might try to look for other symptoms. I would also check her for night sweats on her forehead and neck every night about 1-2 hours after she is sleeping. Does she wake up or cry during the night at all? Do her ears turn red at odd times? Have you asked her if anything else hurts? You need to ask or they often won't tell you. They don't know what normal is. Ask if her head ever hurts or her eyes or ears.
Sorry to hear you have this worry.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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Yes, she does sweat easily at night, and during the day. I always just thought she is hotter than others. She does not have fever.
I think I will ask the doctor to give her a test just to calm myself if nothing else. After a total of 7 months on antibiotic, and now we are starting from zero, it's quite a disappointment.
Thank you all. You are all the best.
Posts: 822 | From midwest | Registered: Apr 2009
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
wtl - you are not starting from zero...you have probably made progress against lyme if she does indeed have it. But as you probably know, there are almost ALWAYS coinfections involved if there is lyme, and they have not been addressed with the drugs she has taken.
My daughter started on zith, made some progress and then plateaued b/c we weren't hitting the coinfections. She did much better when we added Mepron and Bactrim, and later Rifampin instead of Bactrim. She is now doing well on Nutramedix herbs, which would be another option for your daughter. My kids herxed on Samento, Cumanda and Enula and have not backslid since switching to them.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am really sorry your little one is sick. It sounds like lyme plus bartonella to me, having the same symptoms myself - and not addressing the later for over a year.
I think if you address the co-infections as well as lyme you might have better luck. It is frustrating and frightening when it comes back. It sounds like she has a strong immune system though.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I'm sorry that you are up against this. It is so hard when the kids have issues that could be lyme related.
I don't believe in growing pains. For what it is worth, that is the number one complain my now 14 year old when he was that age. I wish we would have known that his particular issues were congenital tickborne illnesses.
Number one complaint of my son who is nearly six? Leg pain and tummy pain.
Tonight, he has a headache. Most kids don't have this stuff.
I'm treating with homeopathic remedies. . working with a homeopathic who has him on snake venom, which is cool because of the whole spirochete notion. She has been researching the German work on homeopathics for tick borne illnesses. The good news with that is it is really, really affordable.
We did the cowden in rotation as well. It doesn't have to be western abx.
My thoughts go out to you. None of this is easy.
tillingmama.wordpress.com
Posts: 564 | From Tick Hell | Registered: Oct 2008
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posted
I want to thank everyone for your thoughts.
From everything I know, bart definitely seems to be the problem and has not yet been addressed. I will press on and get her tested. What's the best option for testing bart?
Posts: 822 | From midwest | Registered: Apr 2009
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