Has anyone seen this tic/ behavior?

[Teri]

Dd6 is dx with PANDAS/Bartonella/Lyme. Around The beginning of April we started to see a real backslide - new tics/ compulsions cropped up along with the the all familiar PANDAS symptoms including not eating. We had just started to treat the Bartonella by adding Rifampin so we initially thought perhaps it was herxing.

It continued to escalate and was quite bad by the end of May. Her labs in mid-late May showed a dramatic rise in Mycoplasma numbers. At the time dd was on a combo of Azithromycin, Cefnidir, & Rifampin. We contacted Dr.B because symptoms were the worst we had seen since the onset nearly 2 years ago. He switched her meds to Cipro,Cefnidir, & Rifampin to address the elevated mycoplasma.

He felt the Azithromycin wasn't working anymore - she had been on Azithromycin daily since her onset.

 

We saw an improvement in the first two weeks - the squatting tic that had developed and occurred every few seconds stopped. However the improvement seems to have stalled already. . Her head nodding/shaking tic remains. She has verbalized that her PANDAS is still bothering her. A new tic has cropped up and it sounds like she is gasping / struggling for air. She has asthma and I have repeatedly asked her if she is tight - do you need a treatment? She tells me me no - and it's from her PANDAS that's why she is doing it. It's like my jumpies (how she refers to her tics).

 

Has anyone else's child had this breathing/ wheezing type tic or behavior? We are concerned that maybe the stall in her improvement /response to medication means that she may need a higher dose.?

 

What do you guys think?

[WorriedDADNMOM]

Hi Teri!!

 

For us it(Pandas Progression) was as follows:

 

ages 2-5 irrational fears, sep anxiety, mild behaviors and somewhat Oppositional defiant, quirky, irrationality overall emotional lability.

ages 5-6 severe oppositional defiance in addition to above with increased intensity of all above.

Dec 2010 at age 6.5 came down with severe eye,nose forehead, eyebrow scrunch and roll of eyes post strep tic diagnosis that was preceded in earlier week(s) with severe emotional distress....dark thoughts...truly scary.Penicillin took care of this tic and over all symptoms improved. kept on Pen till school got out in May of 2011

Sept 2011 Mild ticcing same as above started. We noticed a constant head nod (as if saying yes)

Sept to Dec 2011--this progressed into full blown head nod, roll with shoulder and arm chorea like movements that were uncontrolled flapping of her arms.

 

I say all that to say that I think until you can help the body:

1) Debulk any infection----------abx

2) Chill out the immune system------also abx but also figuring out immune triggers------foods, allergens, etc....

3)***** Beginning to strengthen body and immune system.

4)***** Controlling inflammation and preventing future infections(best you can)

 

I am not sure about what your doing other than what is stated above.....but wanted to just chime in and say we are with ya and wanted to give any info that might help. For us it has been MANY SUPPLEMENTS......I am not sure what has been the biggest contributors to our success, but I would not change what we have done thus far. We have all three out kiddos with it.

 

PM me if you want more info. Keep your head up!!!!! Keep fighting!!!!!

[911RN]

Dd6 is dx with PANDAS/Bartonella/Lyme. Around The beginning of April we started to see a real backslide - new tics/ compulsions cropped up along with the the all familiar PANDAS symptoms including not eating. We had just started to treat the Bartonella by adding Rifampin so we initially thought perhaps it was herxing.

It continued to escalate and was quite bad by the end of May. Her labs in mid-late May showed a dramatic rise in Mycoplasma numbers. At the time dd was on a combo of Azithromycin, Cefnidir, & Rifampin. We contacted Dr.B because symptoms were the worst we had seen since the onset nearly 2 years ago. He switched her meds to Cipro,Cefnidir, & Rifampin to address the elevated mycoplasma.

He felt the Azithromycin wasn't working anymore - she had been on Azithromycin daily since her onset.

 

We saw an improvement in the first two weeks - the squatting tic that had developed and occurred every few seconds stopped. However the improvement seems to have stalled already. . Her head nodding/shaking tic remains. She has verbalized that her PANDAS is still bothering her. A new tic has cropped up and it sounds like she is gasping / struggling for air. She has asthma and I have repeatedly asked her if she is tight - do you need a treatment? She tells me me no - and it's from her PANDAS that's why she is doing it. It's like my jumpies (how she refers to her tics).

 

Has anyone else's child had this breathing/ wheezing type tic or behavior? We are concerned that maybe the stall in her improvement /response to medication means that she may need a higher dose.?

 

What do you guys think?

My son has suffered from a "gasping air" type tic from age 5 to about 11. He is 13 now and we haven't "heard" it in awhile, thankfully. It would wax and wane with exacerbations and remissions. It is clearly documented in all his IEP annual evals. His ST even did a voice modulation program with him for about a year because it would profoundly effect his speech . It was like one of those voice recognition programs you see on crime shows. She taught him to "see" how he was speaking with the graphs. She taught him control his breathing and speak apppropriatley. He essentially had to repress the tic to breath and speak correctly so I think it helped him get rid of it. He was attempting to speak on a breath intake vs. an exhale. ST could not even fathom how he could do it. TRY IT---try to speak while gasping air in. It's very difficult!!! Yet, he was able to do it but his voice would die off (for lack of air). My son has never had asthma but we have strong family history for asthma. Multiple family members on both sides of family. As a nurse, it was my concern he was developing asthma until I clearly know it was a ticcy sorta thing. He never wheezed but he would gasp taking in great gulps of air making it seem like he was stuggling for air. So, yes I have seen this type of tic behavior you describe.

 

My son is sans antibiotics. Tics are on the downslide from where we have been in the past although he still has some complex vocal tics. More vocal than motor at this point. HTH!

[rowingmom]

Just the first thought that came to mind, if your daughter is being treated for lyme/bartonella. Is she being treated for babesia? One of the more pronounced symptoms being "air hunger".

 

I have heard mentioned that as you treat one co-infection, symptoms of others might begin showing up.

Edited June 21, 2013 by rowingmom