nitshel

Hello everyone, We are struggling with a flare since a month. DS has a congested nose which coincided perfectly with a flare in his tics. This is not the first time we have seen this pattern. Blood tests confirm very high IgE levels (despite IVIG). Has anyone experienced this before? Any tips?

Thanks dasu - does that mean 4 months to see even the faintest glimmer of progress? Three months in we have really no sign of any change - we really want to get him off the SSRIs that we had to use to tamp down on his latest flare that has continued unabated for months now....really we cant afford to wait for months more for something that might not occur I know several people on this forum have tried IVIG and it has not worked for them - how long after the infusion does one say "OK, time to try something else"?

Hello We had IVIG done for our DS 10 in mid-October. We are not seeing any difference in his tics - they still exist. He is better when he is well rested and they get bad when he is tired or excited. Overall, there does not seem to have been much of a change. We are coming up to 3 months. He had 2 mg IVIG. How long after IVIG did you see any difference in your child? We are wondering if we should start thinking about PEX and tonsilitis. Thank you,

Hi - we have a quick question. We've tried IVIG HD and have not seen improvement and we are thinking about Plasmapheresis. We've been told that a tonsillitis (and adenoid removal) is needed before Plasma could be considered - to ensure that there aren't any "bad bacteria" lurking in there that could influence post-plasmapherisis (since the body is essentially immuno-compromised for a month or so after the plasmapherisis treatment) How many people have had tonsils and adenoids removed before going down the plasmapherisis path? Is this necessary?

I think gut health is certainly important. We are also reading up on fecal transplant- despite the ick factor there does seem to be clear evidence for its efficacy. One recent book that talks about gut health (and poop transplant) is "10% human". As long as the poop donor has been screened for diseases , history and diet it is a relatively safe procedure - indeed there is a video on Youtube on DIY fecal transplant.

So we tried to get into Mass General - we saw on the website that Dr. Geller was taking new patients. But then we got a call from the hospital saying that they will only accept patients who are patients of Mass Gen or affiliated hospitals. We are in Northern VA.Any ideas on how we can get DS into the program? Please post or PM me. Thanks!

Has anyone tried this supplement? It had good reviews on Amazon - supposed to be a broad antimicrobial agent and anti inflammatory. It has also been mentioned in the nice Bartonella article recently posted on this forum

Thanks sf_mom - we will certainly check it out. Is this treatment covered by Insurance perchance?

I have asked a question related to what's happening with DS on another thread. Basically his CamKII was very high on the Cunningham Panel. So basically that means there is a cytokines cascade , antibodies have been triggered by something and the immune system is attacking the basal ganglia. As the point has been made there are so many moving pieces here - inflammation, underlying infection, autoimmunity, cytokines... It's hard to find what the "off switch" is - perhaps there are multiple switches ...

Agree jan251 - in DSs case looking back we see that his immune function was sub-optimal given the numerous ear infections he would get every year. What confuses the heck out of me is whether his immune system is too weak (and allows unchecked infection) or too aggressive (autoimmune issues). It can't be both ways - can it?

jan251 - I couldn't agree more. We are seeing marginal improvements in DS. Makes us wonder what we might be missing. I'm not so sure about parasites - we've thrown anti-virals, antibiotics, herbs at this and have had limited effect. This is why we are considering some kind of auto-immune issue - its the logical item we have not addressed head-on. We' ve just started back on Rifampin - DS had been on Buhner for the past few months and off Abx - until this flare. We are at a loss to explain where this came from - perhaps someone is a Step carrier and gave it to DS? Perhaps the Lyme/Bartonella re-awakened? Who knows...we;ve been fighting this nearly 4 years and it always seems the disease is one step ahead of us.....

Good news indeed. I hope that this does not take a decade to come to the general market.

Some questions for the group. Can someone explain how a child goes from High CamKII to PANS? DS has Lyme - diagnosed in 2013 - sudden onset of tics in 2012. Cunningham panel came back with CamKII of 147 - very high So here is my stab at what happened : Lyme triggered an immune response which went haywire - causing autoimmunity and high levels of antibodies against Basal ganglia which is showing up as high CamKII numbers. Is this theory / hypothesis correct? Am I missing something? Trying to build a mental model of what is going on...and what treatments help bring down the CamKII numbers....

Some questions for the group. Can someone explain how a child goes from High CamKII to PANS? DS has Lyme - diagnosed in 2013 - sudden onset of tics in 2012. Cunningham panel came back with CamKII of 147 - very high. So here is my stab at what happened Lyme triggered an immune response which went haywire - causing autoimmunity and high levels of antibodies against Basal ganglia which is showing up as high CamKII numbers. Is this theory correct? Am I missing something? Trying to build a mental model of what is going on...and what treatments help bring down the CamKII numbers....

For our DS - rabid fear of germs (although this is better than before), picking his nails, smelling any new thing encountered.

We have looked at co-infections and the abx protocols (and Buhner) have been with those in mind but it seems like we've hit some kind of wall. Perhaps the infection is hiding in places the meds/herbs cannot get to. To be fair the Buhner protocol takes a year or more to complete and we've only been on the journey for a few months. But the latest flare makes it seem like the underlying problem hasn't budged. I'm torn about PEX- it does not involve any foreign fluids being introduced into the body but I think to myself, if one removed all antibodies of all kinds from the blood (which is what I believe PEX does), won't we be making the patient vulnerable to disease? And what's to stop the misguided immune system from creating new misguided antibodies? So from that perspective is PEX just a poor bandaid for a problem whose root cause lies in an awry immune system and/or a chronic infection?

Thanks mommybee- certainly food for thought. We have tried all of the options you outlined- pulsed abx, supplements, anti inflammatory, diet control and after 3 years we've hit a wall - plus recurring flares that come suddenly and disrupt DS school and social well being. We also see indications of immune issues - allergies, low lymphocytes count. Hard to tell if the Lyme caused the immune system to derail or if the immune system was weak to begin with and Lyme got a foothold... From what I've seen on this forum (anecdotal evidence) the consensus seems to be that most folks seem to find IVIG worth the risk. I know that PEX does not involve foreign blood but it is far more invasive and expensive. Appreciate everyone weighing in - this is not a trivial decision by any means - and a thoughtful, informed decision is super valuable

Hello- just reposting. We are trying to get with Dr. L - but given her schedule - do you know of any other neurologist in the East Coast? Happy to travel, if needed. We are trying to get to an IVIG prescription - think its time! Anyone have any good suggestions. Thank you for your help.

Yes we did check the house for mold - even had all the air ducts cleaned. The house isn't very old and the school building seems pretty good too. This is actually the first time DS has had an allergy in the summer - usually it's the Spring. Sf_mom - I assume insurance is covering the regular IVIG infusions? We are trying to find a PANDA doc to give us a way to cover the cost - not quite sure how we will pull it off. DS blood tests show his CD57 is way low ( haven't tested for C4a) - so that's another data point in my mind that points to a wonky immune system...

@emst- we thought about Helminths but didn't decide on it one way or another - still trying to get over the "ick" factor 😀 Have others tried it?

Our LLMD wants us to try Immutol - she says many of her patients have had good results with it. We also need to find several ways of tamping down inflammation- we just began trying Enhansa and Nordic fish oil. This summer has been crazy with ragweed allergies bringing out the tics in DS

Our DS has Lyme (Advanced Labs 2013). After abx and now on Buhner we are considering IVIG. My question- does one do IVIG only when some IG levels are low - or can we consider IVIG to reboot the immune system even if the IG levels are within range? We know his immune system is likely wonky due to alone- constant allergies, ever present inflammation- but surprisingly the IG levels seem to be in range...thoughts ?

Hello All, Wanted to ask a question that has been bugging me for a while. Our DS has been on abx for over a year and 3 months with only a little resolution in vocal tics. We had a diagnosis of Lyme through Advanced Labs nearly 2 years ago. As part of his regular blood tests I've noticed that his absolute lymph count is always beyond range (normal range is 1.3 - 3.7) Every report has a higher than normal absolute Lymphs count (save one - and even that is near the top of the range). A report or two with this sort of reading might be dismissed but this is a pattern over nearly 2 years! Can anyone help meunderstand what does this mean - that there is an underlying chronic infection/inflammation - thats, there is "something there" despite over a year of multiple rotated high-does abx? Or could it be a hyper-stimulated immune response (i.e. there is nothing there now - but there once was - but the immune system has not got the message to "stand down"? Anyone else seen this with their situation? Thanks very much!

Hello All, We are looking for a good immunologist who can test for - and tell us, if our DS has autoimmunity. The few allergists and rheumatologists we have visited pooh-pooh the whole PANS/PANDAS concept and either just do a cursory IGA /IGG test or dont do anything at all. Our son came back positive for Lyme based on Advanced Labs culture and has been on Abx for over a year - sadly not much improvement despite multiple Abx combos. We just started Buhner prootocol a couple of weeks ago - lets see how that plays out. My theory is that there is little / no Lyme (or co-infection) left - but the immune system is in overdrive and needs to be curtailed. However, before we start him on steroids (which had an adverse effect a year and half ago (before we discovered Lyme)) I'd like to check for auto-immunity. Does anyone know of a good immunologist who is PANS/PANDAS aware and can help? We live in the DC Metro area but are open to traveling to meet a good doc. Thanks in advance!

Hi Ambersmommy - can you write a little more about what Lyme treatment worked for you? (I also PM'd you). Also did you try IVIG LD or HD? And lastly what helped the Insurance Co. pay for the treatment - did a neuro write the prescription? Thanks - and so happy to hear the news about your child - gives all of us hope....!!!