Tics replaced by compulatory behaviors and anxiety

[AmySLP]

My worst fear has come true. My 7 y/o daughter's tics are essentially non-exisitent & now she has some extreme fears and compulsions. These are begining to affect her functioning, as she is avoiding many activities because of fear or the time spent on the compulsatory behavior. She fell into exacerbation 1 month ago with severe emotional lability & with a switch in ABX, that is under control. But now the anxiety and compulsions are emerging. My daughter's PANDAS has always been primarily tics and choreiform movements. For the last few days, I have not seen any tics. I Switched her back to zithromax & started Bactim (Dr. B prescribed this prior to our Disney trip) but I was afraid of the possible herxing with our trip and then school beginning. She had been taking augentin XS as a prophylaxis. We are on this new combo for only 4 days. My husband has been researching IVIG (we have never considered it an option or necessary before). We have an appt with Dr. B on Oct. 20th. We have not seen an LLMD yet for the Erlichia & Bartonella. Anyone else ever seen tics or OCD/anxiety dissipate, with one replacing the other.

 

Thanks,

Amy

Edited September 30, 2011 by AmySLP

[NancyD]

We were in a similar situation. The PANDAS treatment (IVIg) cleared up my DD's severe tics and violent rages completely but her anxiety and scrupulosity only continued to get worse. Then we tested positive for LYME and began treatment. That cleared up her joint problems, brain fog, and fatigue, but it did not help her anxiety or scrupulosity. Then we tried to provoke for Bartonella and sure enough she broke out in a Bartonella rash. Since she's been on treatment for Bartonella we have seen a reduction in her anxiety and scrupulosity for the first time in a few years. From what I understand it can take a long time to eradicate but at least now it's manageable. So you may want to be tested for Lyme and other co-infections. Though keep in mind, Bartonella tests are not accurate and it can be difficult to get a positive. I also came out negative, yet after a provocation I herxed badly with Bartonella symptoms. Another thing to consider is KPU. Check recent threads on that either on the LYME or PANDAS forum.

[AmySLP]

I guess I wasn't clear in my post that my daughter did test positive on Igenex testing for Erlichia (sp?) and Bartonella. Although the numbers look like they are borderline positive. She does not have Lyme, just these "co-infections" per Dr. B's interpretation.

Edited September 30, 2011 by AmySLP

[NancyD]

Well the Bartonella may be key to your DD's fears and compulsions. Severe anxiety and OCD are hallmark signs of Bartonella. Have you seen an LLMD for treatment? I would not proceed with IVIg until you have treated the co-infections for a while and then you may find you won't need IVIg.

[JAG10]

Amy,

 

I hear your panic. No specific sister-symptoms to relate from my girls. My older dd had most of it at her sickest and has shed almost all symptoms. I say almost all because she is still reacting to immune challenges although it is becoming briefer and briefer behaviorally.

 

We are one of those families that have done repeated ivig to get her back. Sick most of her life, the first ivig provided 75% relief that would falter with illness. With multiple ivig, there was some illness exposure mixed into those months which muddies the waters of analysis. That being said, I would like to describe the last two ivig's; one in the end of June, the other the end of August. I've noticed something about these procedures; my dd11 is her clearest, brightest, truest self immediately following the ivig- and I mean days. I think it is the steroids that provide that window of her "best" self. Dr B treats two days before, during and after ivig with prednisone. I haven't even been giving it to her the full 6 days because when she had that liver crisis from the Bactrim, we tried to give her as little meds as possible. Turns out, she didn't need it for headaches, she wasn't getting those during/after treatment either. So I basically gave her the steroids the two days of ivig. Perhaps it is the ivig/prednisone combo or the ivig has gotten her to a point were steroids can really make her shine, idk. But I do know this, those immediate days following ivig and steroids are my dd's 100%, then she fades after a few days to 90-95%. And so we continue because she continues to react behaviorally to illness, although briefly-it should not be at all.

 

My dd never took more than 6 days of prednisone. Always orally, never by IV. She goes back for another ivig Oct 27 and I plan to discuss my observations with Dr b then. I'm sure some reading this would deem me nuts to continue ivig for a girl 90% plus with flares that last less than a week. No, I'm not nuts, my dd spent years so sick, it was such a hopeless, helpless time-years of our lives. Puberty is upon us here, literally, so I really want to keep her immune system as calm as possible. We are keeping fingers crossed whatever miracle occurs at puberty to result in " outgrowing" this is upon us; whether that be a tightening of the BBB or a non-destructive response of receptors, bring it!

 

I wish there was a way for these kids to take steroids with less risk/impact in the undesirable ways. They can have a miraculous impact on our pandas children.

 

Hang in there Amy! I'm praying for your family.

Jill

[lfran]

Which abx are you on? Strange as it may seem, I am sure that my DS10's anxiety is made worse by amoxicillin. I'm pretty sure I can track his anxiety starting to starting amox. When we finally took him off amox it got better very quickly. Switched him to omnicef and the anxiety (extremely severe, but only at night) is GONE. Other son also had a bad reaction to amox, so there may be something in my family's genetic makeup with that particular abx. I know it seems odd, but with two kids showing this, I am covinced.

 

quote name='AmySLP' timestamp='1317373325' post='122258']

My worst fear has come true. My 7 y/o daughter's tics are essentially non-exisitent & now she has some extreme fears and compulsions. These are begining to affect her functioning, as she is avoiding many activities because of fear or the time spent on the compulsatory behavior. She fell into exacerbation 1 month ago with severe emotional lability & with a switch in ABX, that is under control. But now the anxiety and compulsions are emerging. My daughter's PANDAS has always been primarily tics and choreiform movements. For the last few days, I have not seen any tics. I Switched her back to zithromax & started Bactim (Dr. B prescribed this prior to our Disney trip) but I was afraid of the possible herxing with our trip and then school beginning. She had been taking augentin XS as a prophylaxis. We are on this new combo for only 4 days. My husband has been researching IVIG (we have never considered it an option or necessary before). We have an appt with Dr. B on Oct. 20th. We have not seen an LLMD yet for the Erlichia & Bartonella. Anyone else ever seen tics or OCD/anxiety dissipate, with one replacing the other.

 

Thanks,

Amy

[AmySLP]

Thanks all. We are trying to get an appt with an LLMD as soon as possible. My daughter is now taking bactim & Azithromycin.

[LNN]

You may want to read up on detox options. When you start killing bacteria, they often release die-off toxins. Sopping up and eliminating those toxins go a long way in helping you feel better.