Love to hear about the IOCDF conference

[LaurenK]

Anyone??!!! Is this new, the cognitive piece???

[JAG10]

I wasn't there, but I read the thumb-hammer analogy written. The brain is simply amazing. Think about stroke victims who have lesions in their brains, cut, gone. But those signals can be re-routed and re-learned. Does your brain work the exact same way it did prior? No, but if you regain the skill via another neuro route, that's what matters, right? And our kids have youth on their side too.

I'm an SLP. When I work on a child's articulation I'm changing a firmly developed neuro pathway. They've been making that sound that way hundreds of times a day for many years. Am I changing that original pathway or re-routing a new one? I don't know for sure, but the result is what matters.

Idk, "brain damage" sounds extremely scary and loaded whereas changing a habit sounds like something everybody does at some point in time. Thats where therapy comes in after you get the assault to stop. I'm sure technically, she's right because she's Swedo. I just don't think the result of what she is referring to is as catastrophic as brain damage sounds.

I could be wrong, but my girl has been sick a long time and that's not what I've experienced. Has she had to be retaught somethings? Yes, maybe that is brain damage, but that term implies no re-learning or regaining of skill and I don't think that's the case.

[LaurenK]

But cognitive damage? Isn't that when you just sort of act "slower?" Maybe im misunderstanding?

[dcmom]

I agree with JAG. I have seen no "permanent" effects from pandas- only learned behaviors that need to be "unlearned".

 

I have seen cognitive (and academic) issues that were temporary, during pandas struggles, but which recede COMPLETELY with treatment (and time).

 

Left untreated, I think it may be hard to decipher whether there is any physical "damage" or if there is damage only due to the length of time and how ingrained behaviors are, and from missed development during illness.

[MomWithOCDSon]

But cognitive damage? Isn't that when you just sort of act "slower?" Maybe im misunderstanding?

I think maybe you're making an interpretation that was not intended. I was there, and I think JAG's take-away from the hammer/thumb analogy is more along the lines of what Swedo meant. At no time did she actually say "cognitive damage" or mention "acting slower."

 

But she is stressing early diagnosis and intervention because, in theory, "dysfunction" could become "damage" if injury becomes repetitious (hammer/thumb analogy again). But by "damage," I take it to mean she is concerned that the anxiety and other behaviors we see in our kids that are the result of PANDAS could become longer lasting with repeated injury, and in that way span the gap from a temporary "dysfunction" brought on by the illness to a more persistent "damage" that might perhaps prevent a "return to baseline" by the standard autoimmune interventions.

 

I completely agree with JAG, though. There are so many examples of people who sustain even very dramatic brain injury and are able to defy common expectations and relearn lost skills or learn new compensatory ones. So, even worst case scenario . . . potentially like my DS who suffered from PANDAS for more than 6 years before we got medical intervention . . . I completely expect a healthy, productive, happy future. But he does need therapy and coaching to overcome the "residual OCD" that has not been so readily set aside for him as it has been for some younger kids for whom the disorder was more immediately identified and treated.

 

Maybe strep hit his brain one too many times . . . . . .

[smartyjones]

i've posted it on here before. . . but i suggest anyone who is concerned about this brain injury/change//concern issue may benefit from reading "My Stroke of Insight" by Jill Bolte, http://mystrokeofinsight.com/.

 

amazing story of a neuroscientist who experienced a stroke herself. a lot of it is her experience of changing from a "left brain dominated" person to a "right brainer" when those left areas were damaged. it's an adult's story and not immediately pertinent to the issues we experience and discuss but i think very valuable concepts to ponder.

 

i had heard it recommended as a read to anyone who has a neuro issue or cares for somone with neurological issues. really interesting things to think about.

[thereishope]

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Edited September 29, 2019 by Vickie

[LaurenK]

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Edited August 3, 2012 by LaurenK

[thereishope]

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Edited September 29, 2019 by Vickie

[MomWithOCDSon]

@Lauren K...Dr. Swedo made apoint of saying the PANDAS differs from some other autoimmune disorder in that the child’s “tolerance” for strep is not gone. This is good. Immune tolerance prevents damage. PANDAS is different than some other autoimmune diseases, like Rheumatoid Arthritis, in which the tissue surrounding the joints become eroded. Such a phenomenon does not happen with PANDAS.

 

 

This leads me to infer that they do not believe it causes permanent brain damage.

 

Great information, Vickie, thanks! I didn't get a chance to hear that said, but it is encouraging.

[LaurenK]

thanks so much for clarifing

[EAMom]

@Lauren K...Dr. Swedo made apoint of saying the PANDAS differs from some other autoimmune disorder in that the child’s “tolerance” for strep is not gone. This is good. Immune tolerance prevents damage. PANDAS is different than some other autoimmune diseases, like Rheumatoid Arthritis, in which the tissue surrounding the joints become eroded. Such a phenomenon does not happen with PANDAS.

 

 

This leads me to infer that they do not believe it causes permanent brain damage.

 

Hi Vickie...

did she say (mean?) tolerance for "self" (not strep?)

 

in other autoimmune diseases (like RA, lupus) isn't it tolerance for "self" that is gone?

[thereishope]

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Edited September 29, 2019 by Vickie

[minimaxwell]

Just wanted to chime in about a recent appt. with Dr Tim Buie (GI) from MGH Boston. He sees PANDAS kids and is VERY active in the world of Autism. He put my DD on a high dose of PEPSID not for any gi issues but for PANDAS. He wants her taking 40 mg BlD(twice a day), she is 100 lbs. He gave me an RX but turns out is what cheaper to buy it off the shelf at the drug store.

[EAMom]

Nancy,

So grateful to you for sharing your notes and knowledge!

My girls have been doing well behaviorally. DD12 is now 14 weeks past her last IVIG. This histamine conversation caught my eye. Both girls and myself- we are covered in bug bites again. I don't think it's just Mosquitos either; some result in wide, flat reactions while others are more focal and intense. We are not out at dusk yet we are covered. My older girl who had the OCD with scratching then picking has been very responsible and diligent about taking care of each bite early so they don't get to a point where they scab. Sorry, kinda gross info.

Alright, so bug bites are a histaminic response and all 3 of us respond to a much greater degree than normal. Does anybody know where this whole H1/H2 receptor conversation fits in with focal, cutaneous reactions? As far as I can tell, we do not suffer from systemic allergies; maybe a little when the pollen count is really high, like over 10 but that is really nothing compared to so many sufferers. I just really think the way we respond to insect bites is weird. And dousing them in deet everyday for months is not an option. Any ideas if this fits in anywhere??? Anyone?

Can't wait to read more info on the conference as well. Any news about Dr. Cunningham's lab?

Jill

 

fyi for future mosquito bites, put scotch tape on them (and leave it there) as soon as you notice them (don't wait until they are big). It really helps with the itching and keeps them from getting big