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Does Cunningham test apply to PITAND?


KaraM

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This is interesting. We just saw our son's PANDAS doctor yesterday. He had plasmapheresis last summer for a severe case of PANDAS. He got @ 65% better. We investigated further to see what - in addition to strep - might be undermining his recovery. We found that he had Lyme! In fact, it looks like he has had it for a couple of years undiagnosed. He also has a Bartonella rash and clinical symptoms of Babesia. His PANDAS doctor is calling this neuro-psychiatric Lyme. She said the kids that get this are the hardest to treat - but they are treatable. She also said that neuro-psychiatric Lyme has many of the same symptoms as PANDAS. In the context of this conversation, we discussed the Cunningham labs as our son's CAM K and antineuronal antibodies were all elevated back in Feb, 2010 when he was diagnosed with PANDAS. She said, Dr. Cunningham has stated that these labs do elevate with Lyme as well as with strep. Additionally, I believe that Dr. Cunningham presented on her research at one of the big Lyme conferences in the fall of 2010.

 

Here is what I took away from that conversation:

The Cunningham labs are immune markers which measure an autoimmune response that targets the brain and nervous system. As time goes on, Dr. Cunningham and others are building on her ground breaking research and finding that these labs are reliable markers of immune assault on specific neurotransmitters and neuroreceptors in the brain. I think it will be many, many years before any of us really appreciates the scope and applicability of this research. I hope that in the future other antineuronal antibodies can be studied. I do think Dr. Cunningham based her initial studies on the NIH findings and used their narrow study criterion because that is how research is done. In the broader clinical setting it is becoming clearer that the Cam K and four antineuronal antibodies, which comprise what we call "The Cunningham Labs," are valid and reliable markers for kids with a particular cluster of neuro-psychiatric symptoms. This is very helpful in proving that biological or medical factors are in fact generating these neuro-psychiatric symptoms as opposed to "bad parenting" or purely psychiatric causes. The treatment implications of this are very important. Today we call that cluster of neuro-psychiatric symptoms PANDAS / PITAND. In the future it may be renamed to something else.

 

I hesitate to make this last statement as discussion of a possible new name for PANDAS is understandably very upsetting to some folks. It is hard enough for a parent to make a determination that their child has this illness, harder still to find a good physician who is knowledgeable about it and willing treat it. The name PANDAS becomes a familiar shorthand for parents as they accrue information and engage in helpful discussion in order to understand what their kids need. Unfortunately, in the scientific community PANDAS is a trip wire that sets off controversy. There may be some very good medical reasons for eventually changing the name to reflect the growing understanding that not only strep but also other immune insults can trigger the cluster of neuro-psyhiatric symptoms that we now refer to as PANDAS.

I truly think that discussion of the cluster of neuro-psychiatric symptoms we call PANDAS should not be a black and white "either / or" discussion. It is playing out as something way more complicated for some kids. For myself, I grieve for my ds14. I also feel a particular sense of pain for parents who are trying to deal with this complex illness without the aid of a physician that is willing and able to treat it. That is one reason I post our son's clinical course whenever I can. I have great admiration particularly for the parents who are resourceful enough to use alternative supplements and any bit of internet information that they feel is safe while they struggle to find their way to treating physicians. I am sure that is why other parents post as well.

 

For our own situation I am not as concerned with what we call our son's illness as how we treat it. :) All my best to all the awesome parents on this forum!

Edited by RNmom
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You should be asking an educated PANDAS doctor these questions- not parents who have absolutely no medical training- and furthermore have children who are not yet in remission.

Some of us have neither of those luxuries. Additionally, the PANDAS dr's are all giving it their best guess, too - a better educated guess than most everyone else, but a guess nevertheless & some here have valuable experience based on the failures of the PANDAS experts.

 

I am very happy for you to have a child so long in remission, but there's a lot of suffering people here with kids whose cases are more complex than straight-forward PANDAS (if there is such a thing) & your words seem surprisingly antagonistic from this side of the screen. Why post here at all if that's your attitude? Life's difficult enough already...

I just wanted to raise my hand and say my daughter's case is straight-forward PANDAS, and adding a parenthetical such as this is not helpful.

 

I'm sorry your child is suffering right now, so I get your frustration.

 

Best of Luck.

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fr88 -

 

Welcome to the forum. I so appreciate information that comes from individuals with PANDAS or PITAND. Thank you, too, for all you've been through that has paved the way for us today. I hope you will share some of your experiences with us if you are comfortable doing so.

 

I don't know what the answer is regarding Cam Kinase and PITAND, and I think this is something they are still researching. That is why we send information about our children and any infections they have when we send blood in for the Cam Kinase test - so they can look for patterns and make sense of it.

 

I can tell you that my son's camK was 156 (PANDAS range) with a long-standing sinus cyst and no clear evidence of strep (though there could have been strep in the sinus). I also imagine that, as you said, anything that causes inflammation can cause a breach in the blood-brain barrier allowing the strep antibodies to cross and attach to the basal ganglia cells and trigger cam kinase production. In that case, I think we would say that PITAND did cause a rise in Cam Kinase - though the antibodies were to strep.

 

Also - if Buster reads this and is willing to chime in, he may be able to explain how the antibody that they are measuring is not the same as what causes ASO titers to rise (I forgot the name of the antibody, but it is a letter / number combination) and how there may be other antibodies that cause a rise in cam K but we've not studied them yet...

:)

 

Again - welcome and I hope to continue hearing from you!

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I beleive the original question was do the cunningham test apply to PITAND. The answer is YES. I would argue they are more valuable to a PITAND kid than to a PANDA kid. The practical value is they can help you determine a path for treatment i.e. - do I take this kid to the immunologist (or pandas expert), or do I take them to the psychiatrist?

 

The cunningham tests don't tell you what the infection was that triggers a raised high Cam K or raised antineuronals. It doesn't tell you if there is still an active infection. It simply tells you if you have abnormal levels of these in you blood, and then you need to work backwards. Cunningham has now stated that TWO additional things BESIDES pandas caused by strep, and Sydenham Chorea can elevate Cam K. Those two things are Lyme and an active strep infection. By that I mean a child - a NORMAL child - will have a raised Cam K if they have active strep. She told me the average is 135. Not median, AVERAGE. I've asked for the range, median, and number of kids she tested for this group - but didn't get a response.

 

In addition to these two, I think there are others because Dr C mainly studys Cam K and the heart. The majority of her funding comes from the heart association. So, I THINK there are other things that raise Cam K, but haven't researched that too much.

 

The fact that just a strep throat (with no pandas symptoms present) is from the newest letter she sends back with results. I got this about 2 weeks ago. My son has done two sets of cunningham test. One prior to ivig, one post. Neither in exacerbation.

 

Additionally, this is a STUDY and she needs and wants all kinds of blood for it, to see what can raise CAM K / Neuronals. Without that, it isn't a valid study. If she is only testing kids with pure pandas/ strep, it has no value - because she would lack the data to say that other things DON'T raise the Cam K. And, she is finding that some DO.

 

So, if your child has a raised CAM K it can mean:

1) An active Strep infection

2) An active Lyme infection

3) A post-infection trigged disorder such as ( whatever we should be calling pandas).. and syndenham chorea

4) WHAT ELSE? Who knows. That is what she is trying to determine, in addition to proving point 3 (as well as seeing if certain antineuronals result in certain symptoms) I think there is at least some antecdotal data on pneumonia as well..does anyone have anything from Swedo/cunningham on this one?)

 

And the third point above is largely proved by the mouse study, not the cunningham tests. Where they take the anitbodies, but not the infection, and give it to a genetically predisposed mouse.

What it really means for most of our practical purposes is - it tells you what they probably don't have, that being "pure" tourettes or OCD. They probably have a messed up immune system and antibiotics and or IVIG will help them. If they don't have a raised Cm K or anitnueornals, IVIG probably won't help them, because they don't have strange antibodies that shouldn't be there in their blood in the first place...so regulating this isn't the path to pursue. Probably looking at traditional phych meds and CBT or ERP.

 

If I had listened to my doctors..my son would be on psych meds and ticcing his head off instead of in school having a great day. THANK GOD I listened to parents I found on the internet. Of course ultimately you make up your own mind as to how much the info can be validated by looking at the actual studys and asking your own doctors.

 

My child is PITAND - we don't have any history of strep (but that doesn't mean it didn't cause this all in the first place, because, you can't tell by titers). Swedo has stated that over time many kids begin to have exacerbations caused by other viruses.

 

As for the original question - Dr C was happy to have him in her study. AND he's been helped by both antibiotics and HUGELY by IVIG. AND we are going to also rule out lyme (or treat it) because he still have one annoying OCD thing I'd like to see gone, and we will consider another ivig once I'm certain there is no underlying infection. So, I LOVE the cunningham study, mostly because we DIDN"T have an obvious strep trigger (if your kid only reacts to strep why bother? you can obviously see strep=exacerbation). For me this test showed me proof that this is what my child had, and that getting antibiotics and IVIG was my best course of action.

 

DS who is PITAND would have a different LIFE without this test. I would have taken his care in a totally different direction without the information it gave me. And he is PITAND.

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Swedo (in her papers and in the video presentation at Mind conference) states that kids may start out with strep as a trigger and later other infections will cause exacerbationa s well.

 

Did DR C say that antineuronals aren't raised by other infections or viruses? Please let know if she has published something on this. I try to read every bit of info she puts out, and can't wait for the lab to publish something new. I'd like to read about that - that would be new information for me.

 

Anyone out there have Lyme or PITAND and high anti-neuronals?

 

I mean no offense either. I just want anyone dealing with PITAND to know that the Cunninhams tests provide very useful information to them. Its because we DIDN"t have titers of positive cultures that I decided to get it done in the first place. I think we can agree, if you child has neuro-pych symptoms, high Cam K/anti neuornals, and they DON'T have an active strep or Lyme infection, they can probably be helped with pandas protocal - antibiotics / IVIG.

 

I agree - check with your doctors before trying things. I'm very conservative. I don't feel that a blood test is trying anything however. Its testing, to see if you might be a candidate to try something.

 

OK -I think we've beaten this one up!!

 

Best -

norcal

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I have to say that I am still a bit confused about all this. So what I'm hearing from fr88 is that the anti-neuronals are ONLY elevated from strep antibodies? and that the Cam K really is totally (possibly) unrelated to strep? It sounds like the antineuronal antibodies, then, are really the only indicator on Cunningham's test that it is "PANDAS"---strep-related, and that Cam K means what? Maybe auto-immune, maybe not? Sorry for all the questions---just really, really want to understand this. My daughter had no strep titers---may have a year or so ago, but wasn't taking her in for sick visits at that point, as my first three were on so many antibiotics they developed allergies to them....so, she is PITAND. Anyhow, her CamK was 168, and anti D 1 was 4000. I still don't hear definitive based on those things that it means pandas/pitand and not tourettes/ocd.

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I did a little serching on the topic and found a letter from Cunningham posted on saving sammy face book page that says "A child may not have high anti-neuronal antibody titers

and still have a high CaM score" I'm assuming she is referring to a pandas child.

 

As for Tourettes or Pandas it isn't definative (since her tests are only offically studies) and Nothing says you can't have both either.

 

BUT, based upon Cunningham's original paper -(which has some significant problems, one being small sample groups), she found no correlation between well defined cases of Tourettes or Traditional OCD and raised Cam K (or antineuronals).

 

So, its more probable that your child has pandas (or an active lyme or strep infection) than those.

 

..AND yes they are now starting to find other things that will cause a high Cam K (like Lyme, or uncomplicated active strep infection in non-pandas kids) So you might consider also checking for Lyme, or other things (like mycoplasma) that can cause these symptoms as well as raised Cam K.

 

I have never seen anything that says that other infections don't raise anti-neuronals. (maybe fr88 has something?) but I have heard from their lab that Cam K is the important number. BUT I've also heard that at least one pandas Doc (Dr L) is more interested in the antineuornals.(at least someone said she was about a year ago)

 

There are hundreds of anti neuronals, and the lab is only testing for four likely ones. I think I heard Cunninghams say that on the OCD conference DVD made of her presentation, and she said they kinda got lucky in their selection process of which anti-neuronals to test for.

 

here is an excerpt from a letter from Cunninghams that is posted on the Saving Sammy facebook page:http://www.facebook.com/topic.php?uid=104887432702&topic=16040

Hope that helps. Good luck with your treatment. I'd get a pandas doctor t look for infections, check immune function, and treat with antibiotics and or ivig if the doc confirms pandas. Sounds like it to me! But, like fr88 says - you need a doctor. One that knows pandas well. Several specialist are posted in the thread pinned at the top of the board. Best -

________________________________

Thank you for your incredibly supportive letter

below. We are not certain but think that there

will be patterns of behavior that go along with

...particular antibodies. This is part of our study.

 

Some children have anti-neuronal

antibodies and generally not all of them but some do

have high everything including the CAM kinase levels

and they generally have tics and OCD together. The CAM

kinase level may reflect either type but was very associated

with choreiform movements as in the nature medicine paper

that I will attach and probably have sent you before.

CAM score of 140 is definitely positive but in the lower range

and her anti-neuronal antibodies may contribute as we do see

in other children. We are trying to compile the data to eventually

publish what we have found from the parental network of children.

Your description below is very important for us to know how to place

your children as far as diagnosis and symptoms. Thank you for

sending this information.

 

For the anti-neuronal antibodies, the thing to look at is the normal

mean because this is where most normal children fall. Some without

symptoms can have high levels but we set up the range to let you know

what it is but for example the titer of 320 is very high for anti-lysoganglioside.

Some children are higher but many who have symptoms are at this level

but a few normal children may have that 320 titer but not so many. That is why

the normal mean is 160. This should be on your paperwork.

 

As for your son, the CAM kinase score at 189 appears to be associated with behaviors

or movements either one. A child may not have high anti-neuronal antibody titers

and still have a high CaM score.

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