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Anyone have PANS/PANDAS w/out Acute onset?


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I dont' know about your insurance - but I'd do the blood test,otherwise you will be waiting for weeks after IVIG to be able to do it. I'd still do the IVIG (you won't get Ignex test results back before Thrusday anyway) and my LLMD supported out IVIG. My son has mycoplasma - and you can have it without Lyme, but I think it is more likely that you have Lyme if you have mycoplasma because it is a common co-infection. I personally don't think thats because it is carried by the tic (although it is) I think its because Lyme "disables" the immune system - and for some reason makes those with Lyme unable to clear mycoplasma (its a common infection found everywhere - and most people clear it themselves, and certainly with short round of antibitocs ).

 

The Lyme tests all stink - so if they are negative, it unfortunately doesn't really mean you're negative. But if positive - then you know for sure. My son's were equivocal (in my opinion - although LLMD says lean toward positive side due to which bands were positive). But mine was positive...so I'm treating him for Lyme as well. Starting with the mycoP.

 

The IVIG will not cure the myco P...but for us it reversed DS's pandas. Good luck - you are in good hands with DR K and his staff.

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This very question is what kept me from pursuing PANDAS earlier. I mean, it had been 4 years with OCD diagnosis from top OCD clinic. No mention of PANDAS even though one of researchers on staff there. It was friends who had heard all of the PANDAS speakers at OCF Conference that convinced me to rule it out. I've had 3 other docs confirm - PANDAS - and the treatement we have chosen has made a huge difference. In hindsight, it is clear our child changed in a matter of days - DD always had underlying minor quirks and 4 years of noone knowing what was happening, but there was a day it all changed for her. As quickly as she'd get bad, she'd get better. There may be weeks or months of an exacerbation. Once here, it was here. Once gone, gone! Periods of ZERO symptoms. Today, 2 years into antibiotics, 10 months into IVIG, and 2 months into functional medicine, we are GREAT! Same for DS who was diagnosed within a year. It has been a long, long journey and we may not be at the end....yet. But, staying where we were 2 years ago would have been awful! I am SO VERY GRATEFUL for my OCD Mom friends that we met at the OCF Conference 3 years ago......they have saved us.....by encouraging us to keep turning over stones. We may be broke, wrinkled, gray, BUT we have each other and we are gaining our health back. God is good......So, I way, rule it out!!

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I could actually pinpoint the day, the hour, and even the minute the severe symptoms started. It was unmistakeable. She was 10, in the middle of a restaurant, and starting "shaking", completely unable to stop. We immediately went to the ER. They gave her 3 shots of Atavan, which made no difference, and said they had absolutely no idea what to do.

 

But, in retrospect, there were all sorts of things that happened before that. Now, I know that these are consistent with Pandas, but at the time I didn't.

 

I think each presentation is different, but as a parent, you know when there is something severely wrong with your child.

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  • 2 weeks later...

JAG10---sorry to hijack this, but wanted to hear more about what dr. k told you about "missing the sudden onset." I thought he was a firm believer in IVIG for pandas, even chronic cases??? We have been chronic, likely due to no sick visits for 2 years, and then the biggie with the onset of tics suddenly. I didn't see the germaphobia/ocd as "sudden onset" because i had no flipping idea about pandas. just thought it was a phase of ocd.

 

 

My problem with the "sudden onset" parameter has always been that it is so problematic for the under 5 y.o. children. This spectrum of illness needs to be looked at without taking ANYTHING for granted. The lower age limit is set at 3...why? because you can't get strep younger than 3? How certain are scientists about that? What about all the chronic ear infections in toddlers, they can't communicate what is going on with them! Then you add in the "normal" periods of terrible Two's and Three's.... it's a mess to figure out. My 2 y.o. nephew had strep for months. My SIL only kept taking him back to get "re-swabbed" because of my girls. He no longer had strep symptoms, but was still positive. It took 4 different courses of abx for him to get rid of strep and then they finally pulled his tonsils. He's 3 1/2 now and has never had a solid bowel movement his entire life. Her pediatrician keeps telling my SIL she's not worried about that?!?!?! What is wrong with these doctors!!!!!

 

My dd12 had a dramatic worsening in 3/2007, but that is when her condition went chronic. I was definitely concerned before that, so I guess I missed the sudden onset, that's what Dr. K told me. My dd had sky-high anti-DNAse B titers and elevated ASO. At first I thought that definitely meant strep, not sure of that either. Lots of speculation that DNAse B can rise due to other infections.....Again, how do you get to the bottom of all this when you can't take for granted that "common medical knowledge" even about lab results is actually accurate???

 

Why is the medical community so worried about parents chasing the wrong path with abx and blood tests, but not so worried about chasing the wrong path with years to find just the right psych med? It's Pandora's box that they don't want to open. Shame on them! Shame on them all.

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JAG10---sorry to hijack this, but wanted to hear more about what dr. k told you about "missing the sudden onset." I thought he was a firm believer in IVIG for pandas, even chronic cases??? We have been chronic, likely due to no sick visits for 2 years, and then the biggie with the onset of tics suddenly. I didn't see the germaphobia/ocd as "sudden onset" because i had no flipping idea about pandas. just thought it was a phase of ocd.

 

 

My problem with the "sudden onset" parameter has always been that it is so problematic for the under 5 y.o. children. This spectrum of illness needs to be looked at without taking ANYTHING for granted. The lower age limit is set at 3...why? because you can't get strep younger than 3? How certain are scientists about that? What about all the chronic ear infections in toddlers, they can't communicate what is going on with them! Then you add in the "normal" periods of terrible Two's and Three's.... it's a mess to figure out. My 2 y.o. nephew had strep for months. My SIL only kept taking him back to get "re-swabbed" because of my girls. He no longer had strep symptoms, but was still positive. It took 4 different courses of abx for him to get rid of strep and then they finally pulled his tonsils. He's 3 1/2 now and has never had a solid bowel movement his entire life. Her pediatrician keeps telling my SIL she's not worried about that?!?!?! What is wrong with these doctors!!!!!

 

My dd12 had a dramatic worsening in 3/2007, but that is when her condition went chronic. I was definitely concerned before that, so I guess I missed the sudden onset, that's what Dr. K told me. My dd had sky-high anti-DNAse B titers and elevated ASO. At first I thought that definitely meant strep, not sure of that either. Lots of speculation that DNAse B can rise due to other infections.....Again, how do you get to the bottom of all this when you can't take for granted that "common medical knowledge" even about lab results is actually accurate???

 

Why is the medical community so worried about parents chasing the wrong path with abx and blood tests, but not so worried about chasing the wrong path with years to find just the right psych med? It's Pandora's box that they don't want to open. Shame on them! Shame on them all.

 

 

Yes, even chronic cases. I haven't been on his site in awhile, but he used to have a paragraph about the necessity of treatment prior to puberty; that treatment was just as effective caught early or chronic prior to puberty. I'm not even sure he subscribes to that anymore as he has taken many post puberty patients since then as well as young adults.

 

I think it's effective, but I don't think it's a cure...which used to be a big debate on here. It seems to me like chronic kids are more likely to relapse. Some people who have caught this early have had great success minimizing relapse. My girls are apparently asymptomatic to A LOT, so I'm intrigued by this alternate fever response theory. My girls don't get them; acute strep, myco-p...nothing. Me? I've been on my back for 4 days with a fever (and I got a flu shot) so I have no idea what's going on. No "sick" symptoms is one of my greatest challenges to managing this beast. Without blood tests, I have no idea what's going on, and of course you need two to tell what's really going on....it is a tough road. But I really think this year is worse than others, every 5 years seems to be brutal for my family. Last time I went to doc sick was 2007 and that's when my dd12's WHAM spiral occurred. You mention no "sick visits..." I remember the nurses looking at me saying WoW, you haven't been here since last well check?!? That was because we saw someone private for all the psych stuff and there wasn't a sniffle. sigh

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Just wanted to post an update. I was not able to test with Igenex before we flew out to Chicago. Dr. K and his staff were lovely. I had tons and tons of ?'s for him. What I have come to realize is that each of these PANDAS specialists have their own theories,and they are not always in agreement.

When I reviewed my dd17 previous Lyme results everything was absent and negative. Not 1 positive band. I may redo Lyme in a few months.

 

IMHO if you have a child with severe OCD and nothing seems to help,the blood work is interesting i.e. either high strep OR myco OR interesting IGG subtypes--please pursue PANDAS. Sudden onset or not.

 

My dd17 tolerated lVlG well,worst being headaches. We have begun to see small shifts. Actually slept OUT of our room several nights. This has not happened in I can't remember when. We are also seeing some horrible "flipping of the pages". the worst was last night. Her Trich came back fast and furious during a huge panic attack. She reported this panic attack as the worst ever. she ended up pulling some hair out. this has not happened in well over a year. I was hoping this was behind us. She is so upset about it. I keep telling her this is her brain healing. Unfortunatly it happened when she was on a date :( she now no doubt will have anxiety about it happening again.

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Why is the medical community so worried about parents chasing the wrong path with abx and blood tests, but not so worried about chasing the wrong path with years to find just the right psych med? It's Pandora's box that they don't want to open. Shame on them! Shame on them all.

 

Agree completely.

 

Me three. Could not have said it better.

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