PANDAS/PANS same as Tourettes/OCD?

[kc35]

Do you believe that Tourettes, OCD is a form of PANDAS/PANS caused by some infection? For those of you have talked to Dr. L, Dr. T and Dr. K etc. - do they make a distinction between these disorders or do they consider all children with tics, OCD to have PANDAS/PANS? On Dr Murphy's webpage (U of Florida), the disorders are listed separately so I assume she thinks they are different. Any insight would be appreciated.

 

So far I have seen 3 doctors in 2 weeks and no one is willing to do any bloodwork to test for anything. I have been told by one Dr that my DD has Tourettes. However her symptoms have ramped up a lot over the last 3 weeks while she has been sick with different illnesses. She was prescribed azithromycin today for possible walking pneumonia (mycoplasma) but she threw up. So I have to call Dr to determine what to do. What is strange is that when she has a fever her tics are less but once her temp goes back to normal her tics increase. Any thoughts on this? Thank you.

 

 

[pr40]

I can comment on the last thing you say, indeed, when there is fever some PANDAS symtpoms lessen. The same phenomenon was initially observed with syphilis. if drs you are dealing with don't want to do blood tests, you may want to find those that do want. use the pneumonia to test for all inflammatory markers, say that you suspect that your child was bitten by a tic and do IGENEX Western Blot lyme test. you can also order Cunningham's test on the supposition that there is something wrong with your child's immune system.

one thing to ask yourself is if tourettes and OCD run in your families as well as if you have auto-immune issues in the previous generations.

[peglem]

Well, I think that tourettes and OCD are symptoms. "Syndromes" are usually only a description of symptoms. PANS is one possibility for what causes those symptoms to occur. If you accept the "diagnosis" of tourettes and OCD, then you will only be treating the outward manifestation of the problem. Searching for what causes them might give you a more permanent solution. Even if these things run in your family, it may just be an indication of a genetic predisposition for whatever the underlying cause is.

[LNN]

Yes, my son's symptoms got much better during a fever but then would explode once the fever broke. For my son, his tics come when he's trying to detox and can't get the job quickly enough. The tics, for him, are a response to "poisonous" toxins released by dying bacteria - they seem to effect his nervous system or somehow interfere with the signaling between neurons that control movements and cause tics. When he's not fighting anything or is fighting an infection in a way where his waste disposal system can keep up with the toxins in the body, he has no tics.

 

If this were also true for your DD, it would make sense that tics would come after a fever broke because that would be the time where toxins were at a peak - like bodies littering the battlefield at the end of a battle.

 

I'm sorry you're striking out with your local doctors. I had the same experience. By the time a condescending neurologist agreed to run an ASO for me (he'd never heard of an antiD-Nase B test and looked at me like "you read too much on the internet") - my son was 6 weeks past his positive strep swab and his ASO was normal (ASO peaks @ 3 weeks). He then dismissed Pandas even more than he already had. The experience led us to a Pandas specialist 10 hrs away. It wasn't fun doing all that traveling, but it was worth it to get my son on the path toward getting better.

 

I do personally think that "traditional" OCD and Tourette's are very different than Pandas. I believe each have a medical cause but I don't believe infection is the universal or only cause. I've never heard a Pandas specialist say it was all Pandas either. But the thing is with "traditional" OCD, the average age of onset is 10. And someone with traditional OCD has periods where symptoms wax and wane, but rarely do they have periods where symptoms are completely gone. Pandas kids do have periods where there's no OCD, no tics. The second distinction is that Pandas kids usually have a "saw-tooth" pattern of symptoms. They spike almost overnight, out of nowhere, and then slowly dissipate once you treat the infection. In traditional OCD, symptoms tend to build up/wax gradually - the person can feel it getting worse over a period of time, usually not "overnight".

[rowingmom]

We were also symptom/tic-free during fevers, all of which would return shortly thereafter. DD never did have much in the way of OCD.

 

Ticcing for DD was an indication to me that she needed to detox - get rid of die-off toxins. We saw increased ticcing with changes in abx protocols - more ticcing for the harder abx, especially tindamax, but they resolved slowly as her body delt with the overload.

 

We also had a dx of Tourettes and klonopin was rxed by both our PCP and Ped Psychologist. I declined.

 

I have kept in touch with the ped psychologist because she was the first to mention "perhaps PANDAS" to me, but then in the second breath said it couldn't be treated in Canada. So she then suggested Tourette's treatment.

 

I have been sending her PANS research papers which she has been passing on to PCPs/peds who ask her about the possibility of this type of reaction.

 

I have also been giving her updates on DD, and because DD has been doing so well since completing lyme/bart treatment, she requested we come in for a reassessment.

 

She was amazed at DDs improvement and said she had been lobbying the Ontario College of Physician to look into PANS more deeply. They have brushed her off.

 

She also works closely with Bethesda, so understands the PANDAS work being done there, but she wasn't really aware that similar reactions could be caused by bartonella.

 

She told me I was the most informed lay-person she had come across, when it came to PANS/PANDAS. I responded "You should meet some of the parents on the ACN forum ". She has absolutely no problem with me researching the internet. I love her!