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PANDAS PRELIM RESULTS...QUESTIONS


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Well, we got the CAM II results from Dr. Cunningham's office today and I was wondering what this means.

My twins had the following CAM II results:

Twin A - 156

Twin B - 149

 

From her attached letter it appears both are in the mid-PANDAS range. Did I read this correct?

 

The reason I asked is because we are in an exacerbated tic phase with our boys. They were doing so well after two rounds of antibiotics, which ended a month ago...now the tics are back in both boys (Vocal - throat clearing, clicking, and snorting, etc. - Motor includes: blinking, rolling left ankle, neck twitch, squatting tic, finger sniffing, etc.)

 

Does this mean we should start the antibiotics again?

 

Any help would be greatly helpful...

Jen

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If it were me, I would rule out all infections espeicially lyme, bartonella, mycoplasma, babesia. Many of us have discovered a multitude of infections at the root of our childs PITANDS.

 

 

 

 

Well, we got the CAM II results from Dr. Cunningham's office today and I was wondering what this means.

My twins had the following CAM II results:

Twin A - 156

Twin B - 149

 

From her attached letter it appears both are in the mid-PANDAS range. Did I read this correct?

 

The reason I asked is because we are in an exacerbated tic phase with our boys. They were doing so well after two rounds of antibiotics, which ended a month ago...now the tics are back in both boys (Vocal - throat clearing, clicking, and snorting, etc. - Motor includes: blinking, rolling left ankle, neck twitch, squatting tic, finger sniffing, etc.)

 

Does this mean we should start the antibiotics again?

 

Any help would be greatly helpful...

Jen

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Dr Cunningham would consider those results to be in the pandas range. What a lot of us are finding is that many infections could elevate the cam k. I think it would be good to see a doctor who understands tick borne disease to rule out Lyme and co-infections. Lyme literate doctors typically use specialty labs like igenex for

testing because standard tests run by quest or labcorp do not test for all Lyme significant bands. I assume you are from the northeast given your screen name so Lyme could be a problem. if mycoplasma is an issue, a good Lyme doctor should check for that too. You could contact ILADS.org for a doctor referral hopefully near you.

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In the meantime, I'd say yes, yes, yes to going back on ABX to keep the tics under control. Fo rmy dd 6.5, this is her primarly symptom and w/o ABX the tics get more and more complex with time off ABX. IF they improved, put them back on.

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Thanks for all the comments...

 

I called their ped on Friday and she is reviewing the results and the article from Cunningham's office. Hopefully, she will start the boys back on Azith on Monday. It really takes their tics away...I will keep you posted on their progress.

 

Thanks again,

Jen

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Jen,

 

What part of Vermont are you in? What a coincidence. We were in Rutland until 6 months ago. And we have twins, both boys. 4 1/2. One twin has been diagnosed with Pandas after strep exacerbated symtpoms set in, motor tic and other behavioral problems. We just found out he also was infected with Lyme while in VT. And had it since he was at least 3. Like all the moms here, would strongly urge you to see a Pandas specialist as well as Lyme specialist. As we've all discovered, the more time we lose in proper treatment, the more difficult the symptoms are to get rid of. I think all of us can't stress that enough.

 

darlene

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Yes...go back on abx, since they worked, and don't get off them anytime soon. Even if it's a co-infection, abx is usually at the heart of the treatment. Have your pediatrician contact one of the PANDAS specialists (Dr. K, Dr.L, Dr. B.) for suggested protocol. Some doctors are treating this like Rheum. Fever, and the protocol for ARF is giving abx until early adulthood (late teens/early 20's.) Personally, I agree (even though I hate the thought of being on abx that long.) My boys have been on them now for several years (along with other treatment.)

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I was just wondering if you knew how long it takes to get the Cunningham test back now. I know they were running behind for a while, because of the tests coming in. I heard she was getting another assistant and that should help catch up but I hadn't heard if that happened. She is and awesome person. She works her tail off trying to help these kids and families, and trying to figure out this horrible disease.

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We just found out he also was infected with Lyme while in VT. And had it since he was at least 3. \.

 

 

adkmom -- what are you basing that on? was that when symptoms began? and i love VT too -- i went to UVM!

 

He tested positive on 31? so had it for over a year and those years we were living in VT. Unless, he got it in upstate NY when he was even younger.

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Thanks for all the new posts...Yes, we used to live in VT (Burlington) and yes, it was beautiful. We have since moved and currently live in Maryland about 20min from Dr. Latimer. We have set up an appointment with Dr. L now that we have had more testing on the boys. We have considered PANDAS for over a year and have been doing trial and error treatments with ABX. We have seen a clear pattern of reduction of symptoms everytime they are on an ABX, especially AZith. Our ped is reviewing the information and is going to call me today to discuss our next steps for the boys.

 

Now about our other results...no we haven't received anything else from Kathy/Dr. Cunningham. The rest of the results were on Dr. C's desk and we will hopefully have them by tomorrow.

 

Thanks again,

Jen

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Update...

Ok I got the boys anti-neuronal antibodies back.

 

Twin A - had normal values on Anti-Lysoganglioside and Anti-Dopamine 2, he had end of the normal range on Anti-Tubulin and his Anti-Dopamine 1 was 2x the highest normal value.

 

Twin B - had the high end of every normal range except Anti-Dopamine 2 which was in the middle of normal.

 

What does this mean in conjunction with their CamK values?

Thanks,

Jen

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