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Cunningham Panel...are results ever "unlikely"?


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Hi everyone...

 

Just curious on this one. We just got our results back for DS 11, and it came back "highly likely"....in fact the arrow couldn't have been any higher on the red integrative result slider. Crazy high numbers in all but the LYSO-GM1 which was exactly at 320 which was highest value in the normal range. Dopamine D1 was 8,000, Dopamine D2 was 32,000, Tubulin 4,000 and CaM Kinase 210. I don't know what any of those even mean...Google here I come!

 

Anyway, I was just wondering if anyone has ever gotten anything less than a "likely" or "highly likely".... Any "unlikely" recipients out there? Anyone care to nutshell the explanation behind each titer? I'm sure it is in the 21 report that we also received...!

 

We had amazing results from our steroid burst, but slowly, and ever so slightly, symptoms/behaviors are returning.... Waiting to see if IVIG will be next.

 

Thanks for the help!

 

Kristi (on a) MissionMama

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Hi Kristi,

 

To answer your question, yes, we ran the Cunningham panel on my son last summer. His results came back as unlikely. This was the third time we had the tests run for him. The first two times were back when it was still a research study. The first time was in the fall of 2009 about two months after he had Plasma exchange, had been on antibiotics for 4 months and had just completed a two week prednisone taper. I don't have the results with me because we are traveling for the holidays but I know that all four anti-neuronal antibodies were above normal with Tubulin the highest, and Cam Kinase II of 174. Would have been in the 'Highly Likely' range If they were doing that back then. Also, I'd bet that his results would have been similar to your son's if he'd had them done prior to PEX/steroids. Fall of 2010 we ran them again after another year on antibiotics and several IVIG treatments. Results were a little better, but not much. Antibody levels had come down a little and Cam Kinase II at 169.

 

Fast forward to June, 2013. Our son's PANDAS now much improved, but still flaring with illness. In the almost 3 years since the last test, he had been on antibiotics pretty much continuously and had his tonsils removed 2 summers prior. He had also had a couple more IVIG's, but none since his tonsils came out. The Cunningham results now showed all 4 anti-neuronals in the normal range(Tubulin on the high end of normal) and Cam Kinase II of 106, and with an 'Unlikey PANDAS' result. Great, great news and pretty much matching our perception, although I didn't think he was as improved as the test indicated. Also, my son's Strep titres have come down slowly over the years, sort of correlating with his improvements.

 

I wish I could say he was completely PANDAS free but he does still get some symptoms when he is ill. Head colds cause him to become withdrawn and very easily angered, and rarely he gets an uptick in OCD and separation anxiety, but night and day from his initial onset and from the first and second times he had Cunningham panel.

 

My son is immune deficient and qualifies for IVIG for that reason, but he hasn't had one in over three years because we have been thinking of it as a PANDAS treatment. But whenever he would flare and we would set things in motion for him to get IVIG things would settle down before the infusion date and we would cancel. Problem is he gets a lot of colds and stomach bugs so doesn't get a chance between flares to really hit his stride. As a result, we may begin some regular IVIG's for a while.

 

We can't be sure exactly why he is better. Maybe just time. Maybe getting the tonsils out. Maybe slow healing from the damage caused by the initial onset. Maybe IVIG's. He still has a tough time when he flares, as does the rest of the family due to his anger, but overall good news and still getting better. He won the 8th grade spelling bee recently and says his math class is way too easy after struggling with math for years. He has a great sense of humor and is excited about his future.

 

p.s. At the recent North East PANDAS conference, I asked Sue Swedo if they have followed the first 50 cases that she wrote the paper about. She said they have kept track of them and that they are doing great. I wanted her to elaborate but she was swamped with other parents.

 

Alex

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Yea Alex!! :) :) So happy to hear that your son has come so far! You are proof that we all take different paths up, over, through, under or around the mountain, but with perseverance, we all get there. Wishing you a very joy-filled and healthy new year!

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Hi Alex, Thank you so much for the thoughtful and thorough response. I was starting to wonder if there was "anyone out there"!!

 

There were many great morsels of information in your response, and that gives me hope. Unlike many that are here on the forums, this is a new beast to us. DS, just turned 11, first exacerbation hit us like a ton of bricks on 10/25...in hindsight, however, I am sure we had experienced micro episodes in years prior. The very acute onset of debilitating OCD was new to us, however. My first thought was that he had actually gotten exposed to, or somehow ingested, something toxic! It was that scary. He missed over a month of school...just had returned for a few half days prior to the holiday break!!

 

We don't have elevated strep titers (streptozyme, Anti-DNase, Anti-Streptolysin O) but did have messed up CBC values that were of some "concern" or at least proved that DS was fighting hard on something.... abnormal reactive lymphocytes, and low ANC levels...oh, and more that I can't recall.... the immuno at Seattle Children's Hospital had us get the Cunningham Panel....and we are waiting to get his input on what to do from here. I mentioned that we had amazing results from the 5 day steroid burst...it was more than we expected, we had forgotten that our son was "in there"...so it was encouraging. We can see that the results are already fading, and we are just wondering what/how the doc will treat him next. I don't think he is really a disbeliever on PANS/PANDAS, but he is somewhat guarded to even use the term. It was tricky to share with our feedback from the phone consult we had with Dr. K. but with the help of our very supportive pediatrician I think it was well received. Again, we should hear what will come next first part next week....fingers crossed for us.

 

The reason I inquired about anyone getting an unlikely on the Cunningham Panel was just out of curiosity, but your post gave me so much more than I had hoped for, so thank you. I especially like to hear how other kids are doing....like I said, we are new to this whole journey, but at times it has seemed so dark and I allow myself to think of how traumatic life could end up being, permanently speaking, if we don't get help for our son. The week before this all happened, DS was the star in his school play, very social, happy, and really the best academic year of his life so far. I am so happy to hear that your son now in 8th grade is thriving...even if yet pieces of the puzzle still to be put in place, it sounds so wonderful. You must be so proud. One thing that continually stands out to me is that every parent that is fighting for their child(ren) here on this forum is so tenacious, thorough, and highly educated on all of this. What an amazing group.

 

I thank you for your response - I have read it many times. Total side note...my son's name is Alex(ander), but goes by his initials, AJ.

 

Kristi (on a) MissionMama

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Hi Eileen and Laura and thanks! Yes, nice to have some good news. And thanks to both for all your wonderful insights over the years. I don't post much but am still on the forum fairly regularly.

 

Kristi, I just wanted to follow up a little. I have spoken with Diana Pohlman fairly frequently since my son's onset. Diana is the woman behind the PANDAS Network website. She would call and check in with us every once in a while because from her perspective, our son was one of the tougher cases. So hopefully it won't take so long for your son to make some decent progress.

 

I think it is great that your immunologist ran the Cunningham labs. Hopefully there has been some real true progress in belief in PANDAS in the medical community. At the conference I mentioned, one of the speakers was Dr. Jolan Walter, the head of pediatric immunology at Mass General, one of the most prestigious hospitals in the world. She treats PANDAS with IVIG and in her presentation put up a slide that showed the improvement in YBOCS scores in her PANDAS patients after IVIG. If you could get your immunologist to correspond with her it would probably go a long ways toward convincing your immunologist to treat aggressively and how to go about it.

 

I'm sure you are learning a lot quickly about PANDAS/PANS so this may not be of much value, but there are other known triggers for PANS including mycoplasma pneumonia worth testing for.

 

Good luck,

Alex

Edited by alex
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Kristi,

I too am in (well, near) Seattle and spent a week at SCH when my DS 13 was hit like a ton of bricks, back in '11. We had 2 docs mention PANDAS in their notes which I didn't hear a whisper of until I requested all medical records a few months later. We were actually told to try accupuncture (we did), a Naturapath and that 'it will all just go away' which it hasn't of course. The chief of Derm has been our best advocate there actually but he's pretty lost re/PANDAS so we have worked with Dr.'s from out of state and Dr. K in Redmond. We are just back from Georgetown where DS had PEX 3 weeks ago...I was wondering if you mind if I PM you?

I am so sorry your son, and your family are going through all of this, it's a journey we would sure like to have avoided (x10,000)!

Erin (DsMom)

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Kristi,

I too am in (well, near) Seattle and spent a week at SCH when my DS 13 was hit like a ton of bricks, back in '11. We had 2 docs mention PANDAS in their notes which I didn't hear a whisper of until I requested all medical records a few months later. We were actually told to try accupuncture (we did), see a Naturapath and that 'it will all just go away' ...which of course it hasn't. The chief of Derm has been our best advocate there actually but he's pretty lost re/PANDAS so we have worked with Dr.'s from out of state and Dr. K in Redmond. We are just back from Georgetown where DS had PEX 3 weeks ago...I was wondering if you mind if I PM you?

I am so sorry your son, and your family are going through all of this, it's a journey we would sure would have liked to have avoided (and that's the understatement of the century)!

Erin (DsMom)

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