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3 months post 2nd IVIG 5 month flare


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Hello, I have not been here for awhile for many good reasons. My Pandas child, age 9 1/2 had his first IVIG with great results 2 years ago. I had spent so much time here....it was nice to not have a reason to visit. He basically went straight into remission; one flare 3 months later then 18 months of bliss....a couple of popcorn moments but overall in great shape.

 

Then this past December over xmas break. Boom. Full onset symptoms. No Illness except a stomach flu 3 weeks prior and that is what I blame. I did not even blink an eye. I have been down this road and I Knew that I could weather the storm. Week after week past. I kept telling the school and myself that this too shall pass and reminded myself that this was inevitable. By the end of February I started getting concerned. It was lasting too long. So Dr. K and I put our heads together and made a decision. One more IVIG. We had a prior overturn for pro insurance so I was not concerned about coverage. Middle of March my ds had another IVIG much to my relief because the first one had such a great outcome.

 

UGH....

 

We are heading toward the 3 month mark and I am completely stymied. This flare has been completely different from the rest in the way of it's wax/waning component. My Ds did wax/wane his way through flares, but if he held a week of no symptoms, he was done..... This is not the case, both prior IVIG and post IVIG. Dr. K told me that this would be the last IVIG he needed and not to worry.

 

About 5 weeks ago, 5 weeks post IVIG and I have seen him turn a corner. How I qualify him is by is temper tantrums and motoric movements.

 

He is having several days of emotional issues plus motoric movements and then several days of calm. I just do not know what to think anymore.

 

He is not really fitting the profile because this flare is now going on for 5 months. He looks more Bi-polar then anything else. So erratic.

 

I am not defeated easily, but I am starting to wonder if we had moved past Pandas and now we have something else going on. It feels like Pandas, but yet it does not.

 

He has lost all his Math skills by the way and his peers now all thin he is weird. They are refusing to play with him because of his aggression and they are calling him dumb. He is slightly above average in IQ btw....try explaining that to a 9 year old whom cant seem to focus on anything right now.... He now hates school which was always in the past a positive place for him .

 

I am wondering if what I am dealing with is not a Pandas flare, (only because while he has some symptoms, his unique symptoms have died down), but a kid whom is dealing with social anxiety as a fallout form ongoing Pandas symptoms. He is typically very aggressive and regressive along with all the other traditional symptom.

 

Sorry for the long post......any thought appreciated....thinking CBT. I am wondering if this is Not Pandas this time around..

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This is exactly the response my son had to both his IVIG's with Dr K. The second just didn't work. I took him to see an integrative doc who has tons of experience with kids having infections. She tested him for what must have been everything under the sun,minfection wise and he had Lyme and coinfections. Treatment for those has brought lasting, long term improvement,mwith small,majors flairs. No one wants to hear Lyme. Trust me, I get that. I didn't think it possible in my son and I was wrong. You need to take him to a doctor that will be very thorough in testing of infectious causes, viral and bacterial, and who will run Lyme tests that are more accurate than the standard CDC recommended.

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Sorry to hear quannie. I can say this - that we are operating under the belief that untreated infections are the primary driver for our kids physical and psychological issues. We have yet to determine what that infection is though.

 

Both of our kids went into a flare unlike any other flare that started in October 2014 and is slowly abating post IVIG. From around March of 2015 they seemed to show marked improvement but it was erratic, Good days and bad days, much like you describe with your son. That said we noticed a decline in both about two weeks ago, and then were informed that some kids on their sports team had strep. We are wondering if the variable expression in symptoms is driven by exposure.

 

There are also other drivers beyond infections - mold, allergies, foods. My daughter had a complete breakdown after a Costco trip, after trying out all of their free samples (of course we have no idea which sample was the culprit or if it was just a co-incidence).

Edited by dasu
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I would definitely run the IGeneX test for Lyme. After 5 years with our daughter waxing and waning and our son developing symptoms for 2 years, I finally threw in the towel a year ago and had both kids tested (as well as myself). All of us ended up having Lyme -- I never would have guessed it. We have been in treatment since October and I feel better than I have in 10 years (I had gotten sick so gradually that I thought I was just aging until I had strep and myco that I couldn't get rid of). Our daughter now has no symptoms (age 14), and our son (almost 11) is progressing to no symptoms (he just has a stubborn mycoplasma coinfection that we are battling and has a lingering throat clearing tic).

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I finally broke down and decided to try Conserta to help him with his hyper activity and focus symptoms. Voila. He is doing much better within one hour of the first dose. We are on day 6 and he has been consisitently better. School is reporting the same.

 

Dr. Swedo says a certain % of Pandas med's will help. It has so I am going with it.

 

Amen

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