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All my Questions about Pandas


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I am just beginning this frustrating journey into PANDAS OCD with my 12 year old daughter

I have so many questions and there is so much contradiction with regards to diagnosing, treatment and recurrence. I identify with so many of you when you say that you had put your child to bed one night and they literally wake up the next day with these inexplicable symptoms. I have worked in Mental Health for many years and have never observed/experienced the onset of an illness as quickly as this. We are in month 4 of these symptoms now -some days are good, somedays are not- just when some symptoms subside others become more prevalent. We have started the medication/CBT route with her with some progress but it really is one step forward and two steps back. My Questions -and i am just going to throw them out there are

 

Can children recover from PANDAS- that is become symptom free?

 

Will further strep exposure trigger the onset of symptoms yet again?

 

Can the strep also go on to attack other organs in the body -as this has been identified as an auto immune disorder?

 

Can the sypmtoms change or do they stay the same? ie My daughter did not develop tics- but could she in subsequent exposures to strep

 

Do food allergies play a role in PANDAS?

 

Could Gullain-Barre syndrome be a factor in this disorder?- daughters paternal grandmother has had one episode of this disorder, though daughter has never been diagnosed.

 

Any ideas/answers out there?

 

I do have a book written by Tamara Chansky (sp?)" freeing your child from ocd" which is absolutely fantastic!!!

 

I sincerely empathize with all of you out there going through this and would greatly appreciate any info support you can offer...

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Welcome LoriL...

 

Can children recover from PANDAS- that is become symptom free?
I would like to believe "yes" with aggressive antibiotic treatment and/or IVIG. Neither treatment is always 100%. It seems with subsequent episodes, antibiotics become less effective at controlling symptoms (although prophylactic abs are very helpful.) IMO all PANDAS kids should be on prophylactic abs (just like kids with ARF).

 

I have heard of older kids (college age) that have had PANDAS (there are some that were in the Swedo study) that were severely affected and are doing well now. It would be great if someone would publish data on how these kids do long term depending on what treatment they received! According to Sue Swedo (3rd hand info!) PANDAS kids do well long term if treated (although I don't believe she specified what "treatment" was...IVIG or prophylactic abs or...?)

 

Will further strep exposure trigger the onset of symptoms yet again?

 

Yes...although it is possible that certain strains of strep are more likely to cause problems. Also, many PANDAS kids end up reacting to non-strep illnessess (and vaccines). 2 mo. ago my Pandas dd had an exacerbation b/c she got fifth's disease. She also reacts when family members (her sister is an asymptomatic strep carrier) get strep, even though she is on abs herself...a bit like a peanut allergic kid reacting to peanuts in the environment even though he isn't actually eating them.

 

Can the strep also go on to attack other organs in the body -as this has been identified as an auto immune disorder?
I don't believe this is a problem for PANDAS kids in general...although some do have problems with other organs (eg. joint pain). I haven't heard of PANDAS kids having cardiac complications (like ARF).

 

Can the sypmtoms change or do they stay the same? ie My daughter did not develop tics- but could she in subsequent exposures to strep

 

They can change. Sometimes the first PANDAS episode (this happened to my dd at 4.5 years) is only urinary (increased frequency, acting like she had a bladder infection). Her big episode (where we finally learned about PANDAS) 1 year ago (7.5 years of age, included psychotic behavior, anorexia nervosa, ocd, tics, depression, anxiety.)

 

Do food allergies play a role in PANDAS?
We haven't had an issue with food allergies. I think there are some that have...

 

Could Gullain-Barre syndrome be a factor in this disorder?- daughters paternal grandmother has had one episode of this disorder, though daughter has never been diagnosed.

 

Lots of PANDAS kids have relatives with autoimmune diseases.

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1. My son was symptoms free and back to regular behavior for 6 weeks until he caught strep again. Very devastating because of the long time it took for him to get back to normal.

 

2.Well, my neurologist told me it may or may not. There are dif strains of strep. My son, has had strep 3 times in 6 months. Each time, behavior changes due to PANDAS occurred. Interestingly, each time, his behavior changes varied. First time, heavy OCD, second time, rage with a sprinkling of OCD and food problems. This time, opposition, needing to be in control, and a sprinkling of OCD. Each time, we did see ADD come and go and a general change in him that is hard to explain.

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Hi LoriL--Welcome. I am so sorry your daughter is going through this difficult time.

I just wanted to add that we also tried the medication and CBT route for a few months. For our daughter it helped her to feel "OK", that there was someone else there-- helped us all. Did she get better because of it? Well, I would have to say I seriously doubt it -- other than we now have a language to talk about OCD with, and certainly that is helpful. CBT and meds. are the standard treatment for OCD, and I was told by one doctor that SSRIs may have an anti-inflammatory impact...(I have never read this anywhere.)

 

However, our daughter would get symptomatic with a cold, sinusitis, etc. She would go on antibiotics for an illness and her OCD symptoms would diminish. She also had tics at one time associated with these exacerbations. I was also told that certain antibiotics can have anti-inflammatory effects.

 

Our child had two severe episodes from which it has taken months to recover, but there has been a recovery for her--lengthy antibiotic treatment has been key, for us (also steroid burst.)

 

Take care--

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