Looking for similarities in our kids

[putting together the piece]

Hello All,

I have been going round and round with a few questions and I hope your input can help figure it out.

1. It seems to me that my DS has always caught everything that was going around ever since I can remember. Are you kids as susceptible to infections as well?

2. I just finished reading 2 books which our new doc. highly recommended. I believe my DS may have a few sensitivities (food and otherwise)that just maybe compromising his immune system. Has anyone else thought about this possibility? Is so how is it going?

3. I keep reading about all the IVIG treatments (with prophylaxis antibiotics) that work but they seem so temporary (some more so than others). Could it be that there is something beneath the PANDAS that keeps our kids so vulnerable? Or is it simply a reinfection?

4. I guess like everyone else I want to figure out where the core of the issue is.

5. Please give me your thoughts.

Thanks

[MomWithOCDSon]

Some of us have talked through this before in the past (keeping in mind I've been in and out of this forum for about 3 years now), so here are my impressions based on that participation and our personal experience with my DS.

 

Some kids with PANDAS/PANS appear to have discernable immune deficiencies, while others (like my DS) appear to be hyper-immune. Those with deficiencies seem to fall both physically and mentally in the face of microbes and/or viruses, while those who are hyper-immune tend to react less with respect to physical responses but respond behaviorally, none-the-less. Many of the hyper-immune are also plagued by allergies, since that is, in and of itself, a hyper-immune response.

 

We did not do IVIG, and I concur with your impression that, for some, it was "the bomb" that sent PANDAS packing, sometimes seemingly permanently, and other times, at least for an extended period, while, for others, it has been a less completely effective response. A couple of years ago, I posed a topic question with a poll, thinking that maybe IVIG was more effective for the immune-deficient than it was the hyper-immune, but the anecdotal response to that poll failed to bear that out.

 

In listening to Dr. Kenneth Bock speak at an Autism One conference a couple of years ago, I was struck with the possibility that my DS's immune system may have been "compromised" even while in the womb, or potentially "pre-conception" by the state of my own body and its system. I don't say that as a martyr; it's just that contending with PANDAS tends to make one introspective. Once we decided to get pregnant and throughout my pregnancy, I was a model mommy-to-be -- no alcohol, no first- or second-hand smoke, limited fish (mercury), no meds, etc. But our knowledge of what's "good" and what's "bad" for our bodies and our environment continues to evolve, and I no doubt participated in something that was "less than good," even if it was beyond my understanding at the time. Plus, I had an updated German measles vaccine about 6 months prior to getting pregnant; my OBGYN told me to wait 3 months, and we waited 6, but still, what if that vaccine contributed to my baby's environment being less than ideal? On top of which, I was a hyper-immune child myself . . . I never had classic, physically-painful strep throat until I was an adult, though my sister had it constantly when we were growing up. So, genetically too, I may have given my kiddo more than his fair share of immunological challenges.

 

Finally, I think, though I realize it opens up a whole 'nother Pandora's Box of research, reaction and reality, that, in the end, much of what may lie beneath our kids' health, their responses (or lack thereof) to various interventions, is likely to be about the mysterious Methylation Cycle and where and when something goes awry with the cycle and sets our kids (or us, for that matter) a bit akimbo. I am far from expert on the topic, but every time someone with more brains on the topic (like LLM) posts a fresh paper, article or metaphor on this topic, I have an "aha moment" about my son or myself. And I have begun to think that, if it's possible to fully understand and intervene and "correct" that process first, then it may be possible that we'll be able to land upon a clear treatment protocol that will be a more effective response across the board, rather than having all these "exceptions to the rule," and only the rare "rule" for whom a given treatment protocol is a lasting, 100% effective response.

 

Just my thoughts . . . .

[pr40]

1. there seem to be two kinds of kids with PANDAS. one with allergies and/or frequent infections. second kind to which our two kids belong does not get sick that often. in place of an illness, they get behavioral issues, anxiety, tics, and so on.

2.yes, PANDAS often comes with sensitivities, allergies, and issues like Celiac. One of our kids has the latter.

3. you are right. There is no cure for PANDAS. Some kids seem to get well enough from our IVIG. others require more. yet others require whole different life style as well.

4.right, but no, it's too complex for the existing science and too controversial. in a decade? there was some movement on strep in Israel where a scientist finally proved that rats can get OCD from strep. Hurray!

Edited February 18, 2013 by pr40

[Ozimum]

I agree with Nancy. And I've come to the conclusion that it's likely that no one thing set off this train wreck. Rather it's probably a combination of genetics, and epigenetics, and various assaults on the immune system which set up a perfect storm - it can include everything from vaccinations, antibiotic use by me and in infancy, a diet rich in carbohydrate and sugar, exposure to infection, to toxic load - you name it, it's probably in there.

For us going to a Biomed dr (used to be called DAN! drs) has helped enormously to help to put the pieces back together to heal the gut, sort out vitamin deficiencies, etc. And it's been paying off big time for DS19.

Edited February 18, 2013 by Ozimum

[putting together the piece]

Thanks for the responses. I really appreciate the explanation about hyper-immune kids because while my DS does get everything under the sun his symptoms are far more behavioral and emotional than physical. I have been kind of thinking that there may be some universal issues which if addressed would certainly help our PANDAS/PANS kids. For instance gut health. Our entire world has become much more poisoned than it used to be, perhaps our kids are more sensitive even if it isn't glaringly obvious. I recently took both my kids off of all gluten and all dairy and restricted processed sugars. Guess what, both kids the milkoholic PANS child and the picky bipolar (I only want sugar or crap eater) are not only complying they are (dare I say it?) happier. I think they both have milk sensitivities and it has compromised the gut. If the gut heals then the neuroendocrine system should start to reset which should help reset and strengthen the immune system.

But it's like peeling an onion. This is just the start. I also suspect that there are many of our kids with chronic infections. Bacterial like Lyme, mycoplasma, Bartonella, parasites, viruses, etc., all causing more immune dysfunction which of course causes more inflammation. Inflammation which could be addressed by immune modulators but won't be cured by those modulators unless the underlying infections are addressed.

I think the subject of methylation really needs to be looked at in depth. Because genetic markers or not it makes sense that there is some type of disruption here. Look at our symptomology.

These are my thoughts. Feel free to agree or disagree I believe that it will be a parent driven effort which will show us the way to address this best. Research is great but I don't have time to wait till everyone stops arguing about the things we as parents already know.