posted
My daughter who is now 6 and 1/2 years old suffers from leg pain at night.
This has been going on for the past 2 or 3 years but has become more frequent in the past year - she gets it about 4 or 5 times per week now.
She was treated for Lyme by Dr.J about 3 years back.
It seems pretty severe and she cries and squirms in pain. The pain is always in her right shin area and recently her right ankle. We give her children's motrin or tylenol, which works, but I'm really concerned as she's been on that several times per week for the past year. Is that safe for the liver/kidneys/gut?
Her pediatrician has always dismissed it as growing pains, but finally gave the order to do a blood test to check for Rheumatoid arthritis, and some other things which I couldn't decipher.
Even if her test was positive and she had Rheumatoid arthritis what are the options? Isn't that simply treated with more motrin indefinitely?
I'm torn as to what to do. I could get her back on Lyme treatment - but I suspect that after all the effort it will ultimately end in relapse.
I would appreciate any similar stories and what avenues people have explored for a sick child.
Posts: 655 | From USA | Registered: Sep 2007
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lyme in Putnam
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posted
I was told my son had juvenile rheumatoid arthritis at 6. Dr. To dr. At 9 he went to dr. J. And was on antibiotics for three years. Got off at 12 years old and hasn't relapsed yet. Swollen knees, heart hurting on his 9th birthday ending up in the er. He's 16 now and is a typical teenager, it's been a while and Frankies been ok, thank God. She'll be ok. Would you ho back to dr.j? My son had irregular blood work in oct, went t dr. J in Jan, Lyme was dormant, we don't know where the autoimmune numbers are from, but until he shows symptoms, not waking the beast.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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jackie51
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posted
Questions for you: Was she ever treated for Bartonella? Has it ever been xrayed? Does she take a multi-vitamin and/or Vitamin D?
Sorry to hear, that must be miserable for everyone.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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posted
Putnam: I am thinking about potentially taking her back to Dr.J. but I first want to go through the conventional doctors and tests to rule out other stuff.
Jack: She was not treated for Bart. From what I remember she was on amox for a few months and on zithromax for a few months. Have not done an xray yet. She takes flintstone vitamins every day but not vitamin D. Is that supposed to help with leg pain?
Posts: 655 | From USA | Registered: Sep 2007
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posted
I am not a child, but I do have severe leg pain. I was diagnosed w/Lyme in October and with Bart last week. I was also diagnosed with Psoriatic arthritis a year ago because of my leg. And foot issues. One thing I can tell you is that the treatment for psoriatic arthritis and rheumatoid arthritis is immunosuppressive drugs. They are very similar diseases. If you have any suspicion of Lyme, AT ALL, do not let any doctor put your doctor on any medications to treat the rheumatoid arthritis! I was put on multiple medications (PREDNISONE AND METHOTREXATE) and they practically killed me. They are like putting gasoline on a fire when it comes to Lyme disease.
Definitely look into Bart. I have come to learn that is the reason for my leg pain. One thing you can do in the meantime is get an ointment made with pure menthol. My friend made one for me, and it was a lifesaver. I rubbed it on my legs, and it relieved much of my pain. I am not too sure where you can get one, but I am sure you could make a salve yourself. PM me if you need some ideas. I would be more than happy to look into it, or ask my friend where and how she did hers. I cannot tell you how much it helped!
I am so sorry you and your precious child have to deal with this. I am a mom, and can only imagine how hard it is to see your child suffer. I hope you and her find relief, and answers.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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jackie51
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posted
I think Vitamin D helps with bone development. Most of us that have lyme have low vitamin D and consequently supplement.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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Razzle
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posted
Vitamin D deficiency can cause bone pain.
I have had leg pains since I was age 5. At first, I was told this was growing pains. Then once I finished growing, I was told it was sciatica. Treatment for sciatica did nothing. Treatment for Lyme helps. So does taking Nettle leaves daily (Buhner recommends about 1200mg/day for joint-related pain; my joint pain may be neurological but the nettles still seems to help).
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Bugg
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posted
Please make sure your child has adequate Vitamin D/calcium levels....this can intensify achey leg pain...
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Wow thanks everybody. I will definitely look into the vitamin D, and the nettles and menthol too. If you can think of anything else that might help, please do post.
And as far as I'm concerned the information from you guys is 100 times more valuable than our pediatrician's "words of wisdom".
Posts: 655 | From USA | Registered: Sep 2007
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Hambone
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posted
I'm 44 now, but I can vividly remember having night time leg aches that were so bad, I'd wake my parents up, and one or the other would get up and rub my legs until I fell back to sleep.
I would guess I was about 5 or 6 when it started.
My pediatrician always insisted it was growing pains. My mom always insisted it was because I didn't like milk.
But now, here I am with Lyme. So who knows.
Posts: 1142 | From South | Registered: Dec 2010
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jackie51
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Ham-I'll go with your mom was right. Posts: 1374 | From Crazy Town | Registered: Dec 2007
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scorpiogirl
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My 6 years old has legs pain too since she was around 2. Hers seem to come on every 2-3 months and every Doctor we have been to said it was growing pains. Now I'm wondering perhaps I should get her tested for Lyme??
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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nefferdun
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posted
I would agree your child needs to be checked for bartonella. Getting a new appointment with Dr. J would be a good idea especially since she was only treated for Bb.
-------------------- 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
My dd8 has leg pain as well-sometimes severe enough that she will stop riding her bike and crawl. We use Aspercreme as a topical at night to help her sleep. I use this myself for my muscle pain and it definitely helps.
Magnesium is supposed to help with the muscle pain but I haven't tried it yet in a supplement. I have been taking nightly baths with 2 cups of Epsom salts and it does help.
Swimming actually helps too. My dd could spend all day in the pool because it takes the pain away.
It's the Lyme & co that is causing the pain. I was dx'd with Fibro before Lyme.
Posts: 131 | From Nebraska | Registered: Apr 2011
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