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All I can tell you is that Dr. C advised me to wait on the draw because my boys were not in acute episode. She said if the kids are not experiencing definate increase of symptoms, the results will likely be negative and would serve as a baseline only. So, I wouldn't rule in or out PANDAS based on the fact you said their symptoms were mild at time of draw....but, it will be useful in the event of an excerbation.

 

Kelly

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PANS/PANDAS is not unlike many (if not most) other autoimmune diseases in that it is believed to be triggered by an infection. MS, RA, Lupus, even NMDAr encephalitis - if you read about them, almost

Hi, y'all:   I know that some other folks on here have elected to participate in Dr. Madeleine Cunningham's (leading researcher from OUHSC) blood test research study. Dr. Cunningham has co-publishe

Good idea Chemar, done.

Thanks, I was worried about this since she didn't tell me about that, but she called tonight and totally cleared up my confusion. I was not adding 100 to the percentage to look at the chart. At any rate, both my girls now are official and do have PANDAS. I feel a mixture of relief and worry. At least now I have a direction to go in and I have some people who will try to help.

 

Susan

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I too just requested the blood test from Dr. Cunnigham. The kit came while we were on vacation and I think I will wait for a major outbreak before having the blood drawn. Right now we have symptoms but not major symptoms. I don't recall reading on this board about the cost. Is the $200 cost new or has everyone had to pay this to help with the shipping and handling of the sample?

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I too just requested the blood test from Dr. Cunnigham. The kit came while we were on vacation and I think I will wait for a major outbreak before having the blood drawn. Right now we have symptoms but not major symptoms. I don't recall reading on this board about the cost. Is the $200 cost new or has everyone had to pay this to help with the shipping and handling of the sample?

I was also wondering about this (and where I'm going to come up w/ $200.00). It was phrased as a request for a donation, but I wonder if they'll still send results w/o the donation. Its also the 1st time I've ever heard of paying to be in a study.

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Familyof4 and peglem,

 

Yes, the $200 is to cover the cost of the shipping. Everyone else who asked for the study was charged the same. Sorry no one else mentioned this on the posts.

 

Linda

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I too just requested the blood test from Dr. Cunnigham. The kit came while we were on vacation and I think I will wait for a major outbreak before having the blood drawn. Right now we have symptoms but not major symptoms. I don't recall reading on this board about the cost. Is the $200 cost new or has everyone had to pay this to help with the shipping and handling of the sample?

I was also wondering about this (and where I'm going to come up w/ $200.00). It was phrased as a request for a donation, but I wonder if they'll still send results w/o the donation. Its also the 1st time I've ever heard of paying to be in a study.

 

I've encountered unrelated studies where they make you pay to have the exams, labs, etc. If they are considering it a donation, ask for a reciept and claim it as a donation on taxes.

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We got our titers back today from Cunningham. She nicely broke down things for us and included articles.

 

His anti- lysoganglioside was normal but the anti d-1 were high, and the anti d-2 were slightly elevated and the anti-tubulin were slightly elevated and the cam kinase 11 was at the lower end of PANDAS range and the positive serum control was positive in the mid PANDAS range. So I guess now we have the confirmation we have been wanting!

 

For your information we were not charged at all for the shipping they included a return sticker in the box.

 

I guess now we show this to Dr. Latimer at next months appointment and see what she wants to do with it. Dr's in OH would not treat this even if it is positive because they don't want to admit it exists and only will treat with psychiatry. Has anyone used these scores to get help from local Dr's? What treatments did they recommend?

 

Michele

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After this week's appointment, we decided $200 is worth the test from Dr. C, and so I've e-mailed her to see if she can include us. However, I may need to wait for the best results. DD's symptoms tend to manifest mostly at school, and well... since it's summer break, I may wait until her school starts up in mid-August. When Dr. C writes back I'll probably give her that heads up and make sure she's OK with that.

 

What lab did everyone take their children to? I'm wondering if it would just be the local "LabCorp"? Also, has anyone received test results that weren't indicitive of PANDAS? I think I'm mostly worried about getting results that say DD is just fine. It's bittersweet... I don't want anything to be wrong with DD, but knowing would really help us at this juncture.

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We used Labcorp but we had a script for the psychiatrist for labs so I just asked them to do the Cunningham blood draw at the same time. I showed her the paperwork from Cunningham.

 

After this week's appointment, we decided $200 is worth the test from Dr. C, and so I've e-mailed her to see if she can include us. However, I may need to wait for the best results. DD's symptoms tend to manifest mostly at school, and well... since it's summer break, I may wait until her school starts up in mid-August. When Dr. C writes back I'll probably give her that heads up and make sure she's OK with that.

 

What lab did everyone take their children to? I'm wondering if it would just be the local "LabCorp"? Also, has anyone received test results that weren't indicitive of PANDAS? I think I'm mostly worried about getting results that say DD is just fine. It's bittersweet... I don't want anything to be wrong with DD, but knowing would really help us at this juncture.

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After this week's appointment, we decided $200 is worth the test from Dr. C, and so I've e-mailed her to see if she can include us. However, I may need to wait for the best results. DD's symptoms tend to manifest mostly at school, and well... since it's summer break, I may wait until her school starts up in mid-August. When Dr. C writes back I'll probably give her that heads up and make sure she's OK with that.

 

What lab did everyone take their children to? I'm wondering if it would just be the local "LabCorp"? Also, has anyone received test results that weren't indicitive of PANDAS? I think I'm mostly worried about getting results that say DD is just fine. It's bittersweet... I don't want anything to be wrong with DD, but knowing would really help us at this juncture.

 

 

Hi Lacy,

My daughter's blood test actually did indicate the presence of antibodies--prior to testing Dr Cunningham had noted it probably there may not be dramatic results as she was doing very well, on antibiotics and had been recently given a steroid burst. We did not expect to see anything, but it did show presence of antibodies and will serve as a baseline in case of another exacerbation. I explained the situation to our pediatrician and they were willing to do the blood draw in the office.

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After this week's appointment, we decided $200 is worth the test from Dr. C, and so I've e-mailed her to see if she can include us. However, I may need to wait for the best results. DD's symptoms tend to manifest mostly at school, and well... since it's summer break, I may wait until her school starts up in mid-August. When Dr. C writes back I'll probably give her that heads up and make sure she's OK with that.

 

What lab did everyone take their children to? I'm wondering if it would just be the local "LabCorp"? Also, has anyone received test results that weren't indicitive of PANDAS? I think I'm mostly worried about getting results that say DD is just fine. It's bittersweet... I don't want anything to be wrong with DD, but knowing would really help us at this juncture.

 

Hi Lacy. We went to Carillion Labs, the lab that does the tests for our local hospital. They charged me a fee to spin off the serum but it was not any trouble to bring in the box from Dr. C. I worried the whole time we waited for the results that it would come back normal and then where would I be! But they came back positive and now we are getting some treatment. It's a start. Good luck to you!

 

Susan

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After this week's appointment, we decided $200 is worth the test from Dr. C, and so I've e-mailed her to see if she can include us. However, I may need to wait for the best results. DD's symptoms tend to manifest mostly at school, and well... since it's summer break, I may wait until her school starts up in mid-August. When Dr. C writes back I'll probably give her that heads up and make sure she's OK with that.

 

What lab did everyone take their children to? I'm wondering if it would just be the local "LabCorp"? Also, has anyone received test results that weren't indicitive of PANDAS? I think I'm mostly worried about getting results that say DD is just fine. It's bittersweet... I don't want anything to be wrong with DD, but knowing would really help us at this juncture.

 

 

Hi Lacy,

My daughter's blood test did not indicate anything--but before testing Dr Cunningham had noted it probably would not as she was doing very well, on antibiotics and had been recently given a steroid burst. We did not expect to see anything, but it will serve as a baseline in case of another exacerbation. I explained the situation to our pediatrician and they were willing to do the blood draw in the office.

I don't know whether my daughter's test will come back positive or not, but either way its good info to have. If it rules out an autoimmune problem, then we'll know to look for something else. My daughter has been severely impaired for a long time, and we've been trying to figure out things out for a long time, so, i'll be glad to know regardless of which way it goes.

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We had our dd's blood drawn at LPCH (Stanford Univ.) where our immunologist is. He already knew of Dr. Cunningham (who has a very good reputation) so that helped.

 

I would think your any ped (or other doc) could okay the blood draw (through whatever lab they use) if you show them the paperwork from Dr. Cunningham.

 

Our dd wasn't really in a big exacerbation (esp. compared to Spring 08) when we got our values. It was April, so she was in school. She had some low grade stuff (handwriting issues, off on mild vocal tics, anxiety, increased symptoms when exposed to strep) for all the school year (since Oct.). We did cut her Azith. to 125mg/day (from 250mg/day) for the week b-4 the blood draw. We also cut out the Ibuprofen. Her anti-neural anti-bodies all still came back high and her CaM kinase II was at the upper end of the PANDAS range. I don't know if my dd is always in an exacerbation and the Azith. is just keeping the bbb closed, or cutting down the inflammation...or how much her values fluctuate. I would have been curious to see what her values had been a year ago b-4 we discovered the Azith.

 

Interestingly, we had her ASO titer drawn at about the same time as the Cunningham labs...ASO was pretty much undectable...17 or something like that. So much for ASO as a "test for PANDAS".

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We just recieved our results today and Carter's CAM Kinase II % was 201% which s very high and in the SC range. It was 101% above the basal level. It then says 233% plus control (it is confusing). I am not sure if I am looking at the 201 or the 233% as his result? She marked it on the graft at 201 in the red SC range. His anti-lysoganglioside was very high, his anti-D1 and anti-D2 were slightly elevated and his anti tubulin was elevated. SAomeone wrote out a nice description of the different levels and what they mean but I can't seem to find it.

It all makes since though and makes me relieved but also a little sick to my stomach that his levels are so high. I also can't believe I went in and told a nueologist he had SC and hesaid, "no he did not and laughed". We were planning to go for plasma exchange on July 6th but Dr. Latimer has had a family emergency and we may need to post-pone. The intensivist said we could still do the PEX but we need Dr. Latimer to tell us when stop. Does anyone know with PEX what level of antibody they get it down to before they say it is considered "cured"?

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I think Carter's result is 201%. You'll have to ask Dr. C. what that 233% is. hmmm. we have something on our results that says "Positive serum control 176%" ...I wonder if the positive serum control varies with each batch of tests or if she's using a different control for you since she's considering Carter to be SC vs PANDAS?? Or if the 176 and 233% numbers have nothing to do with each other.

 

 

The good news is that if you look at page 3 (figure 2a) of the Journal of Neuroimmunology paper some of the kids with the highest CaM kinase ll levels (P16, P14, P10) had huge drops in levels post treatment. I don't know which patients got PEX vs. IVIG. Something to ask Dr. Cunningham...

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