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Pediatric Lyme and Inability to Stand/Walk

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Posted 1/27/2009 12:38 AM (GMT 0)
Anyone out there have a child that has lyme with another co-infection and your child is not able to stand or walk?  If so, I would really like to hear from you. 

My 16 year old daughter's onset of lyme started in July 08 and she stopped walking in August 08.  She has lyme with babesia.  Dr. J in CT is her doctor, and he has said that she will recover 100% within six to 12 months.  His diagnosis was on 10/31/08.  We are scheduled to see Dr. K in CT (neuro lyme dr) on Weds.  His office assured me that they see children with this all of the time, and they get them walking again.  However, I haven't read any postings about other people having a child with these symptoms, and every therapy place we have been to is so puzzled when they see her.

I'm anxious to know the treatment plan, success rate, current status, etc.  Any information would be so helpful and encouraging.  Thanks.

Lisa

Posted 1/27/2009 1:44 AM (GMT 0)

Hi Lisa.  I am very sorry your daughter is unable to walk.  I believe she is in the best hands possible with Dr. J. and Dr. K.  I do not have a child with Lyme, hopefully others who do will post.

Good luck on Wednesday.  Please let us know how her appointment goes.

Posted 1/27/2009 1:54 AM (GMT 0)
Just about 2 years ago, I could not get out of a chair or up or down stairs or up off the floor. Went for physical therapy and they had me lay on my side and do leg lifts and I could not lift my leg off the table. I lost strength in my muscles very fast with the Lyme, but now you would never know I had such a bad problem. I am an adult, but went from having major trouble moving to almost my old self. My daughter was diagnosed at 16. She could barely move out of bed last year. She is not cured by any means, but there is a tremendous difference in a year. She was on home instruction from November through the end of school last year because she was barely ever awake and could not function. It does get better. Just slowly.
Posted 1/27/2009 11:46 AM (GMT 0)
This is such good information to receive and it gives us hope. I will update you on Weds. with what Dr. K has to say for her. It is extremely tough to see a 16 year old girl who should be having the time of her life in the condition she is in. I do have faith in her doctors and know she is in good hands, but when you read other patients' success rates and the length of time it took them to get better, it is so encouraging. Thank you.
Posted 1/27/2009 2:36 PM (GMT 0)
"Keeping"--if you want to talk about what to expect and what we have been through regarding myself and my daughter's treatment feel free to give a call. My number is 973-616-0742. I know how it feels to have Lyme. And I know how it feels to be a parent of a child with Lyme.

Julie
Posted 1/27/2009 3:42 PM (GMT 0)
Thank you Julie. I will do so and appreciate the offer. We "lymies" only have each other, and this forum is a God sent.
Posted 1/27/2009 7:35 PM (GMT 0)
hey lisa,
tap on me diectly on my little letter on the left side. would be happy to discuss your daughter in more detail. I too see Dr. J. for my 5 year old. But lets chat privately.K
Marie
Posted 1/28/2009 1:44 PM (GMT 0)
Hi Marie -- I had difficulty sending you an email through the forum, so I did it separately from my personal email. I hope you got it!  I'm glad to hear you are doing so well with your treatments.  Talk to you soon. . . . Lisa

Posted 1/31/2009 2:45 AM (GMT 0)
How did your daughter's appointment go?
Posted 1/31/2009 2:54 PM (GMT 0)
Hi Julie,

It went very good. Dr. K said he has seen her walk and he imitated it. He treated a veterinarian in MA that walked that way and she got better in two weeks. He said Marissa not only has babesia, but had ehrlichiosis, and also has bartonella. He took her off her meds for the babesia and is treating the bartonella now. I mentioned to him about the cipro for the bladder issues and how well she responded to it, and it said that it was no coincidence because that drug is used to treat bartonella. So she is now taking minocycline and cipro for one month. We will see him again at that point and reassess. He was truly amazing, and gave us great hope for getting her back on her feet. I'll keep you informed of what goes on from here on out. Thanks for everything.

Lisa
Posted 1/31/2009 6:49 PM (GMT 0)
How wonderful! She must feel so relieved that better days are coming and they are coming soon!
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