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"Let's Roll"----it's time to start digging, b/c pandas


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Okay.....I'm at my limit. My "I'm obsessed" post has made me realize that part of my obsession with all this is feeling paralyzed and doing nothing. I have not run dd to all sorts of doctors, because I don't want to freak her out. In addition, our very well respected PANDAS doctor has said that there is no need to test for certain things that are still just not sitting well with me. But what I have realized is that I need to take action, rule some things out some how, so I can stop wondering!!!! The problem is that my husband hears the pandas doc say not to worry about this or that, and then he says "Dr. so-and-so said we didn't need to worry about this-or-that."

 

So here's a list of things I mull over daily, not knowing IF or HOW to test for, but truly wondering what thoughts are about these things. I will start with the ones our pandas doc has said there is no need to test for:

 

1) YEAST. (pandas doc has said "pandas kids never have issues with yeast...it's weird" and also "that kind of testing is just quackery.")

 

2) C3D (pandas doc says "what would we do with that information then? nothing." I say, it would tell us the immune system is on overdrive due to a hidden infection.)

 

3) Co-infections/repeat Lyme. ("Not necessary to test co-infections." and "Lyme was negative because Igenex Western Blot said NEGATIVE" even though numerous bands showed up)

 

4) ALLERGIES/FOOD SENSITIVITIES ("no, not a player. Allergies are only a blip to the immune system compared to strep.")

 

5) VIRAL PANEL ("we wouldn't do anything with this information anyways. You don't give antivirals for pandas.")

 

6) Gut stuff (strep in gut?)

 

Let's say I do want to test for these things.....what are the most reputable tests?

 

1) I have heard OAT for yeast, or is this just another wishy-washy holistic doctor test? What about blood test for systemic yeast?

 

3) Lyme---Our pandas doc told us that Brian Fallon (THE big neuropsych. Lyme researcher whom she respects) has switched from IGenex to Stony Brook Labs. Anyone?

 

4) Allergies/food sensitivities....have heard so many disputing thoughts on these tests. My ped. will run the RAST blood test. What others are recommended?

 

6) Is this stuff really worth testing ? Gut stuff?

 

 

I want to know of those who have tested this stuff, has it been helpful? In regards to really helping with pandas treatment? The integrative route? I hear yeast can make tics worse, and can't for the life of me figure out physiologically how this would be possible.

 

We go to ped. tomorrow for follow up culture to see if dd cleared the strep. I wonder what of the above I might convince him to test. After that, not sure who to see. Wonder if there is one-stop shopping with a certain type of doctor? Or worth a phone consult with someone like Scott Smith? Does he test? I don't want to overdo the supplement route. I have seen it all get flushed down the toilet first hand personally.

 

Thanks for input.

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I have been down every last road you mention above. We used Scott Smith and Dan Rossignol for all of it and they will not "snub" any of it. While it did help pandas, we did end up with gut infections that made my boys unmanagable in the end. After a couple years the strep and the gut bugs were not doing a good job anymore at responding to their respective antibiotics...sigh. We went the route of classical homeopathy which addresses all of it with one remedy at a time and no need for testing.

 

I dont' know who your pandas doc is, but it sounds like his answers pertain to the "purely pandas" kid, meaning the kid who ONLY reacts to strep and nothing else. It's just my 2cents but I think those are few and far between. If you are not ready for the homeopathy route, I say go with Scott Smith or Dan Rossignol. They will do all the testing you want and then some, and they know what to do with the results.

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If your DD is already on abx, you could try the urine dot blot test from Igenex. A lot of false negatives, but it looks for the Lyme antigen in the urine so if you come up positive, that's pretty definitive. That worked for us.

 

If your doc will do some food allergy testing, go ahead with that. Also, will your ped sign for an Igenex or Stony Brook test if you pay for it, rather than trying to submit it to insurance? He may be more willing if he doesn't have to try to submit it.

 

I also followed your route to try to shield my son from all the MD visits -- boy is it tiring! And a lot of docs don't really get it. And after almost 4 years of trying to help my son, I'm not sure that he didn't catch on anyway. He's 10 now, and I still try to shield him, but it is getting increasingly harder. But he so doesn't want to acknowledge or address this, so I keep on trying.

 

 

Okay.....I'm at my limit. My "I'm obsessed" post has made me realize that part of my obsession with all this is feeling paralyzed and doing nothing. I have not run dd to all sorts of doctors, because I don't want to freak her out. In addition, our very well respected PANDAS doctor has said that there is no need to test for certain things that are still just not sitting well with me. But what I have realized is that I need to take action, rule some things out some how, so I can stop wondering!!!! The problem is that my husband hears the pandas doc say not to worry about this or that, and then he says "Dr. so-and-so said we didn't need to worry about this-or-that."

 

So here's a list of things I mull over daily, not knowing IF or HOW to test for, but truly wondering what thoughts are about these things. I will start with the ones our pandas doc has said there is no need to test for:

 

1) YEAST. (pandas doc has said "pandas kids never have issues with yeast...it's weird" and also "that kind of testing is just quackery.")

 

2) C3D (pandas doc says "what would we do with that information then? nothing." I say, it would tell us the immune system is on overdrive due to a hidden infection.)

 

3) Co-infections/repeat Lyme. ("Not necessary to test co-infections." and "Lyme was negative because Igenex Western Blot said NEGATIVE" even though numerous bands showed up)

 

4) ALLERGIES/FOOD SENSITIVITIES ("no, not a player. Allergies are only a blip to the immune system compared to strep.")

 

5) VIRAL PANEL ("we wouldn't do anything with this information anyways. You don't give antivirals for pandas.")

 

6) Gut stuff (strep in gut?)

 

Let's say I do want to test for these things.....what are the most reputable tests?

 

1) I have heard OAT for yeast, or is this just another wishy-washy holistic doctor test? What about blood test for systemic yeast?

 

3) Lyme---Our pandas doc told us that Brian Fallon (THE big neuropsych. Lyme researcher whom she respects) has switched from IGenex to Stony Brook Labs. Anyone?

 

4) Allergies/food sensitivities....have heard so many disputing thoughts on these tests. My ped. will run the RAST blood test. What others are recommended?

 

6) Is this stuff really worth testing ? Gut stuff?

 

 

I want to know of those who have tested this stuff, has it been helpful? In regards to really helping with pandas treatment? The integrative route? I hear yeast can make tics worse, and can't for the life of me figure out physiologically how this would be possible.

 

We go to ped. tomorrow for follow up culture to see if dd cleared the strep. I wonder what of the above I might convince him to test. After that, not sure who to see. Wonder if there is one-stop shopping with a certain type of doctor? Or worth a phone consult with someone like Scott Smith? Does he test? I don't want to overdo the supplement route. I have seen it all get flushed down the toilet first hand personally.

 

Thanks for input.

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If you are asking for .02 cents, here is mine.

 

I would do the Igenex testing. You mentioned to me your labcorp had a positive band 23- so did my dd's. We then went on to do an Igenex, because that positive 23 is VERY indicative, and we were positive for lyme, and then we went to an LLMD. I didn't go to an LLMD until we had done our own testing. You can have any Dr. sign off on the Igenex test- Igenex will send you the kit, you have it signed (can be a fax signature) get the blood drawn, call for fed-ex pick up.

I think it will rattle in your brain until you rule it out.

If you want to test for yeast and gut bacteria, you can do an OAT test from Great Plains Labratory- if you order it from mymedlab.com, you do not need a Dr. signature on it (although it will cost more) They will send you the kit, it is a simple urine collection, again just call for a fed ex pick up.

My .02 cents!

 

P.S.

My dd6 was on Azithromycin while testing for the Lyme.

Edited by S & S
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1) Lyme is a clinical dx, and there is not extremely accurate test. If you suspect Lyme, I would suggest you see an LLMD.

 

2) Gut is a HUGE issue. The first PANDAS specialist we went to, told us it was all in my DS's stomach. That was years after he had stomach surgery at age 6. Then, one of the members of this forum...I don't remember who...suggested that I test my kids for H-Pylori, C-diff, and Giardia.

 

Guess what...DS18 had c-diff. We were seeing a gastro who never tested for any of the above, even though he knew DS18 was on abx for years, had years of stomach issues, and had already lost 15 unexplained lbs (and was feeling sick every time he tried to eat.) It took 3 rounds of abx to clear it. I am now checking monthly.

 

I don't care how purely PANDAS the child is...the gut must be checked regularly, because of the abx alone.

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