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2009 Notes from Diana's Meeting with Cunningham


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I was looking up some info yesterday to put up for that fb Pepsi page. As you know, we are nominating Dr Cunningham's research. Anyway, I remembered this email update from Sept 2009. It was notes from a meeting Diana Pohlman (PANDAS Nework) had with Dr Cunningham. Since we have a lot of new members since that date, I thought I'd repost it for them to read.It had a lot of good info.

 

 

http://www.latitudes.org/forums/index.php?...ic=5349&hl=

 

 

NOTES From Meeting with Dr. Cunningham – Sept. 21, 2009

 

CaM KINASE and anti-neuronal antibodies – What do they Look Like?

Madeleine wanted me to see the way our CaM Kinase and anti-neuronal antibody tests are run. I was able to look under a microscope at donor brain neurons. The donor neurons are kept in a little vial of fluid in a refrigerator. They are shaped a bit like a pentagon and on each end is a little curved “cupped hand” or small tendril.

She explained that when the neurons are healthy and happy, they cluster together gently and “hold hands” in nice, orderly groups.

When a PANDAS child’s blood is placed with these healthy neurons in a container – they begin to move rapidly in a very random fashion – and the “cupped hands” literally assault each other. There is disarray and confusion.

This disarray and confusion of movement is then measured by very expensive machines that use some type of radioactive light rays to physically measure the activity.

She wanted us to understand the following: the CaM Kinase and anti-neuronal numbers are tangible physical movements. It is a display of the potential disarray occurring in our children’s brain mentally, physically and emotionally. It was dramatic to see the “microcosm” of this illness.

 

A FEW CHILDREN DON’T HAVE A LOT OF SYMPTOMS but have a HIGH CaM KINASE, etc? WHY?

She said that is why we are in the study. She thinks that like in ANY ILLNESS, some people develop other mechanisms in the body to arrest the syndrome. If a good study ever were to occur, they would do good measurements of children’s autoimmune systems, their CaM Kinase, etc, and the symptoms --- and probably figure out from there what is happening.

But she knows – strep causes CaM Kinase to rise. That treatment with antibiotics or, if needed, IVIG or PEX, makes that CaM Kinase number go down.

She also said they have not measured CaM Kinase in regularly occurring strep (no pandas symptoms) and that this is a good control and necessary to do.

 

PROGNOSIS FOR OUR CHILDREN

She said in her 30 years of experience with strep and CaM Kinase – where there is PANDAS or Sydenham Chorea – the process can be haulted. It might take a year or two to quiet down the immune system, but if a child does not get further strep infections, things will quiet.

Although the graph in her Journal of Immunology study indicates that some of the kids in the convalescent stage did NOT lower their CaM Kinase in a few children – she said, “Please do not read too much into that.” These kids did not get IVIG, were not on constant antibiotics, there were many controls not available to them-----This study’s purpose was to get the ball rolling for the study we’re in now—to prove that there is a correlation of symptoms and CaM Kinase that deserves further study.

She did not know of any correlation between PANDAS and any other adult onset illnesses. But it hasn’t been studied.

WHEN DOES A CHILD NEED IVIG or PEX or retreatment?

Madeleine said that the clinical picture is the most important thing because this bloodwork is new. She said not to be afraid if your child re-tests for Cam Kinase in a few months after treatment and the numbers are still high. She said rather look at your child. If a little OCD remains or mild tics – it is up to the parent and child and the disruption to family to decide if further treatment is warranted.

I pointed out that we are seeing that there is a range in PANDAS. Some have very acute pandas onset and others have milder pandas onset with rapid remissions. It is up to each parent to figure out what measures they’ll take to arrest the PANDAS symptoms. In any case, there is good evidence from doctors like Swedo and others that at puberty the syndrome will stop.

She did say that when the child is healing from the initial onset -- be sure family members are clear of strep because it is hard for the new IGG cells to do their job if they are around strep and it can re-ignite symptoms until good replication of IGG cells have occurred.

 

FUTURE STUDIES and EDUCATION OF DOCTORS

She has applied for a large grant at the NIH but won’t hear back for maybe even one year. She was surprised by my telling her that most of us have a hard time getting any help. Madeleine said she’ll do all that she can to get her paper “out there” and will talk at any University if invited – doing grand rounds at the hospitals to teach about PANDAS.

Her talk in June to an Autism Symposium regarding the current studies got a lot of interest from the Europeans. She is headed to Europe next week with Swedo and Leckman to discuss PANDAS. She feels very much that the tide is turning, but that it will take time. That our parent network to explain our stories is VERY IMPORTANT to help doctors build awareness of how to treat and identify PANDAS.

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As for family members, you can simply go to your own doctor and have all family members tested. This is not only for those doing IVIG. It's for all PANDAS families. Every time someone has strep, take everyone in. Do a rapid. Rapid comes back neg, do a culture. Some have also had blood work done on the whole family. It's also important that if anyone does have strep, to make sure they go for a follow up strep test 3 weeks after finishing antibiotics to make sure they have cleared.

 

Every time someone in my family has strep, we all go in for strep tests. It gets pricey for a family of 5 with bad insurance, but by doing this every time, we have learned that my 2 non-PANDAS kids do not get classic strep symptoms (same as my PANDAS son). We have also had 2 occassions (one with my PANDAS son, one with my husband) where the rapid came back negative and the culture came back +. Make sure you tell them to run a culture. Sometimes they will not do this if you don't ask, esp for an adult.

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I wouldn't be able to do the whole family here, if we asked the gp he'd have us all in white jackets :wacko: We are due to see Ped very soon, and going to ask him about us all being tested.

We do have a carrier in the house. Our son has a allergy nose issue which we fight with steroids/abx etc, but he's due to have some radical treatment in the hope of stopping allergies and infections.

 

I have asked the GP before and I got the "strep's everywhere" comment - but he thinks PANDAS are a group of bears!

 

Jules

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I wonder how much it would cost to buy a box of rapid strep tests and have them shipped overseas to have an hand. I know some on here who bought them I think on sites like Amazon. Granted, it doesn't do a culture, but I suppose a rapid is better than nothing.

 

 

I wouldn't be able to do the whole family here, if we asked the gp he'd have us all in white jackets :wacko: We are due to see Ped very soon, and going to ask him about us all being tested.

We do have a carrier in the house. Our son has a allergy nose issue which we fight with steroids/abx etc, but he's due to have some radical treatment in the hope of stopping allergies and infections.

 

I have asked the GP before and I got the "strep's everywhere" comment - but he thinks PANDAS are a group of bears!

 

Jules

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Are they like the Ph strips - or would I have to send them for a culture.

 

I'm a bit ocd now - I check everyones temperature, when I see a couple of days low fever thats on the up I get them to the Drs. I see a pattern with the children now - sneezes, then a runny nose, followed by a fever.

 

I just wondered if any other parent has a pandas child with a long running fever. Before all this started dd would be 36.6 and now she runs at 37.5 when not showing strep/tics. Its like even when she appears well, she is still showing signs of low fever. Has anybody else come across this?

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You don't send the strips anywhere. You do it all at home. I think EAMom and Buster have them. I know there are others too, but their names elude me right now.

 

About temperatures, yes, there are other PANDAS children who run fevers w/o explanation. My son went through a time of a raised tempertaure (not quite a fever) w/o reason.

 

I think some have said when the child feels feverish it may be a sign of yeast overgrowth?It wasn't the case with my son, but maybe it's like that with some kids. Is that a possibility?

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Thanks Vickie

 

Yes we do have a very bad yeast issue.....nightmare to keep on top of.

 

I'll have a hunt in the morning and see if I can get some here. They sound a better way for us to check rather than dragging the children to Drs.

 

Thankyou for all the help

 

Jules

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I wonder how much it would cost to buy a box of rapid strep tests and have them shipped overseas to have an hand. I know some on here who bought them I think on sites like Amazon. Granted, it doesn't do a culture, but I suppose a rapid is better than nothing.

 

 

I wouldn't be able to do the whole family here, if we asked the gp he'd have us all in white jackets :wacko: We are due to see Ped very soon, and going to ask him about us all being tested.

We do have a carrier in the house. Our son has a allergy nose issue which we fight with steroids/abx etc, but he's due to have some radical treatment in the hope of stopping allergies and infections.

 

I have asked the GP before and I got the "strep's everywhere" comment - but he thinks PANDAS are a group of bears!

 

Jules

If you do buy any, I suggest the OSOM rapid strep A test by Genzyme. That is the brand my pediatrician and family doc use. I had 2 sample boxes of 5 each from a rep (they bring us OBGYN stuff). But I did look online and a box of 25 tests is $50-$70 or a box of 50 for about $90-$100. The instructions and Qtip things are in the test. It really is not hard to figure out. Most all of you have seen it done on your kids so many times!!

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Thankyou reactive and Vickie for all the information. I've tried all my usual sources and they're not available here. I will be contacting DAN Dr and Ped to see if they can help me with a supply, or do my normal import from the US route if they are unable to assist. However dds Ped is fast tracking sons treatment - he sees a link. :)

 

As for the swabbing.........that will be left to me also, great hubby, but he runs from anything like this, he says his hands are too big!!!! :(

 

On the plus side I came across urine test strips for oxative stress. When dd has a strep throat/infection her ph strips go awol. Ordered the new test strips (AHH more money leaving the pot!)

 

Take care

Jules

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there is good evidence from doctors like Swedo and others that at puberty the syndrome will stop.

 

 

 

Ok - i am feeling a very strong reaction to this statement. Can someone tell me which study this evidence came from? I am wondering if this was in the kiddos who received IVIG or PEX from NIHM? Reading this kind of statement years ago is what made me feel like we would be ok with our son's flare ups with illness if we just treated the strep with antibiotics and held out until puberty. It's this kind of statement that made me not really correlate my 12 year old's sever exacerbation with PANDAS - after all, all the strep tests were negative and he was in puberty, and PANDAS is supposed to remit with puberty not get more intense, so this couldn't possibly be PANDAS anymore. Truly, it wasn't until I read Beth Maloney's book this fall that I realized maybe PANDAS doesn't just "stop" with puberty. And now I read of all these teens on this forum who are experiencing exacerbation. So I guess I am wondering why Swedo and others believe this? If it is follow up from those NIHM kids, I think it would be wise to revise the statement that the syndrome will stop at puberty if properly treated with....with a caveat of warning perhaps for those percentage of kids for whom it doesn't.

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I am afraid that I agree with you- wornoutmom.

 

I think all parents should be encouraged to fight pandas as quickly and aggressively as possible. I don't believe there is any solid evidence, nor has much follow up been done on the effects of puberty. Frankly- someone gave me the " we think they grow out of it at puberty" thing when my dd had her first onset at age 5.

 

Thank you, but no thank you- I do not want to wish my kids' childhoods away!!!

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