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When to do the Cunningham Panel?


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My 3.5 year old was doing great for about 30 days on Augmentin. Then he got a cold and after it had subsided, many of his symptoms came back including horrible tics - gasping, sniffing, grunting, stomping his feet, hitting his hand against things including his teeth, jumping. He had rages, crying outbursts over the smallest things, bad language returned, calling us names, peeing his pants, wet the bed, and I think that is it. It's been a few days and things are definitely starting to get better. His mood is much improved and tics are a bit better but definitely there. We are supposed to be getting the Cunningham Panel in the mail this week. Should we do it even if he is still getting better, or wait until the next relapse (probably his next cold). I just want to be sure our results are accurate. Thank you!

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There are different schools of thought on this. I personally opted to do this when my child was at "baseline". While it may go up when they are exacerbating, I was using the panel to see if he was producing auto-antibodies most, or all of the time. And, now that I've done this test 3 times, doing it at baseline first, gave me a "baseline" for comparison throughout the years.

 

My reasoning was that if most of the time they are not producing these antibodies, than I probably would not get IVIG, and I was using the test results to see if immune therapy was warranted.

 

Of course, I worried that since he was doing so well when we had the first blood draw, that it would not show any autoantibodies. That was not the case.

 

You may ask Moleculera if they have any hard evidence comparing sera reported to be taken in exacerbation vs non-exacerbation (but not convalecent sera - not after treating with IVIG - thats totally different) if there is a difference and how much.

 

Good luck with your decision.

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176 3 years ago

132(this was 3 mos post IVIG, and he was really well)

215 - 3 months ago.

 

He had more varied symptoms at 176 than he does now. But his one really annoying OCD thing is more entrenched than ever. We've just figured out how to work out lives around it.

 

He had raised lyso ganglioside and D1, the first time - and tics ( supposed linked to lyso, and possibly Tubulin being high)

 

Now the only high anti- neuronal is D1 - but it is on the exact cut off for normal.

 

So even though he only has high cam K, he has other anti neuronal that aren't tested for making that cam K so high. That's the theory anyway. Cam K II is a "general activity" against neuronal tissue. This isnt exactly correct, but its easiest way to think of it. Where the other 4 are for specific types of neuronal antibodies.

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Hi! Thanks so much! Do you know what the "normal" cut off number for the CamK is? Is your son doing better now than he was 3 years ago even though his numbers now are higher? My son was doing much better yesterday, today he is doing great. They mailed our Cunningham Panel today but I think we'll wait till the next flare...although fingers crossed there will never be another one ( =

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My sons was high and he was tested after he'd started abx and was doing much better. His was 144 and his tubulin was very high and D1 high. The cutoff at that time was 130 but the ranges have changed since the new lab opened up, so comparing is a little more difficult.

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