7yo with brain inflammation and symptoms flare

[Rhnv14]

Hello everyone, 

 

Reading this forum for over a year, but this is the first time I'm trying to share my case and maybe find a good advise or analysis.

 

My girl D is 7 years old. She is diagnosed with Lyme and Bartonella for 14 months, but we all understand the disease was there even 2-3 earlier. She's diagnosed and went thro 12 months of ABX and 3 Ivig treatments, none of them have improved her but kept her on a gentle status que. Her only symptom was motor tics, and very light vocal tics. And we thought we're handling the situation.

 

In the last few weeks sh'es under a nerve attack. Started with serious motor tics, full body, then she was hurt with a loss of knee reflex, and as of few hours ago she developed a super loud - somewhat chilling - scream tic.

 

We're both with an immunologist and in the last couple of weeks a neurologist who believes she has a neurological lyme where only parenteral ABX can do the work. However, I'm not sure my kid would agree to do an MRI, which is probably needed.

My Qs:

1) do you have a familiar case of tics only onset and a lyme that was attacking the nerves system only?

2) did you have any success in getting your kid to do an MRI? And if yes, how so?
3) did you try parenteral ABX that did much better than oral ones?

Super appreciative for any help. We're in a tough condition as a family.

Thank you!

[bobh]

Our son may have had a vocal tic as a very first symptom, but it eventually disappeared and OCD became his main symptom.  So we are not the kind of example you are looking for.

We got an MRI and were worried about how it would go, but he managed to get through it.  Some kids can suppress their OCD display for short periods, but I can see why you are concerned opposite tics in an MRI.

I have heard of cases of lyme-caused PANS with tics as the main symptom - I will ask a couple of people on my local group whether they have done MRIs.

I have no experience with parenteral ABX, but am reading here http://www.medscape.com/viewarticle/494363 that the question that isn't asked enough is bioavailability of the specific abx when taken orally.  If that abx does not have good bioavailability, then parenteral is the way to go, but if it has >90% (e.g. doxycycline or minocycline), then the benefit of parenteral is probably not worth it.  But maybe the lyme-literate docs have a different take on that, I don't know.

[Sirena]

Hi there, 

If you mean, no joint pain, then yes we are dealing with that and it can be quite common.  We have bad tics and odd vocalizations and other neuro symptoms when flares are bad. We are still in deep. Our children's hospital provided sedation for MRI. Your doctor can ask the radiologist to evaluate kiddo to see if that is needed.

If you are still not getting there, I'd go hunting for other bugs. Did you do the Igenix Full Babesia panel? What about food sensitivities that might still be driving issues?