Diana's notes from mtg w/ Cunnigham

[thereishope]

For those not on the email list, here are the notes Diana took from a recent meeting with Dr Cunningham...

 

NOTES From Meeting with Dr. Cunningham – Sept. 21

 

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.

[dee45]

Thanks for sharing that.

 

Deanna

[peglem]

Yes, thanks for sharing. So nice to get a simple, clear, easy to understand explanation. I don't feel like I have to run off to pubmed, pouring over abstracts till my eyes cross in order to get the full impact of what that means.

[nevergiveup]

Nice note from Diana, and great idea to visit the lab. Several things though I want to add after my child had IVIG and had the Cunningham tests. My child had IVIG mid may and had her Cam Kinase drawn on July 7 to validate her diagnosis. Dr Latimer wanted the Cam Kinase done and she said IVIG will not affect the results. In August when we got back the results it was 144, I was concerned and called Dr. C and asked why after IVIG are her results so High, she said. "IVIG does not get rid of Cam Kinase only PEX does that. ( Similar to what Dr. L said). She felt it may have lowered it slighly. And she emphasized MAY. We will be testing over time to see if my kid is on the mend. No one is quite sure why IVIG helps, may be BBB or B cells or some other mechinism. But your notes Vicki above say that the only way to reduce Cam Kinase is through IVIG or PEX. I know everyone is trying to understand the testing and the numbers and I wanted to tell you what I was told so that parents understand and are not disappointed after having tests again after IVIG. Dr C said TIME or PEX reduce Cam Kinase.

 

Let me know if Dr. C has new info in regards to this since mid August. Since the debate between PEX and IVIG efficacy is always discussed on this forum.

 

Thanks for sharing that.

 

Deanna

[pixiesmommy]

Thank you for sharing. Can someone PM me as to how to join the email list?

 

Thanks again,

Manda

[thereishope]

I'll post the info here so others will know if they are interested...

 

I just contacted pandas network (www.pandasnetwork.org) to give my story and that got the ball rolling.

 

 

Here is a slightly revised copy copy of the intro to that email....

 

I had a little time to meet with Dr. Cunningham at University of Oklahoma last week.  She is a very gracious, southern belle -- very kind and caring and clear that the usefulness of her research is to help the patient.  Period.

 

I met Kathy Alvarez who runs our tests (Adida was out of town) and they are thrilled that we have reached out to them because it makes their work at the microscope "come alive" and they understand better the worth of their research.  They asked about all the families very specifically, how everyone is improving.  I did my best to inform!!

 

Dr. Cunningham gently reminded us to email our stories to them for those of us who have not (me included).  Especially outlining the onset, what was occurring at the time of the blood draw.  Email Kathy Alvarez and she'll be graphing our symptoms and the results in the future.

 

I asked if she would like us to do the CaM Kinase test every 3 months or so for a year --- to give the study a clear picture of our progress.  She said that would be great but there simply is no funding yet so we would have to pay the $200 each time.  It is up to each family. 

 

Madeleine thanked each of us for entrusting her with our child's results.  She is trying very hard to advocate for us with Swedo, the NIH, Leckman, worldwide researchers. 

 

Attached is a memo about my visit.  I speak of things in very general, simple terms --- but you'll get the point.

 

I go back to work next week......so sorry if it takes me awhile to respond to emails.  More parents are getting involved with expanding the website, responding to website emails, etc. --- but it all takes volunteer time! in days with precious few free time hours.

 

 

 

 

 

 

 

Thank you for sharing. Can someone PM me as to how to join the email list?

 

Thanks again,

Manda

[thereishope]

Does anyone have a child that heals naturally w/o IVIG or PEX and have their Cam Kinase numbers while healed ? My son has healed naturally 3 times so far, however, I have not done blood draws on him since he is petrified of doctors now and I have to be protective of him regarding that. So, I do not know if his Cam Kinase numbers are. I know that may be beneficial to others to know if the numbers go down w/o intervention, but I just can't do that to him yet.

 

 

But your notes Vicki above say that the only way to reduce Cam Kinase is through IVIG or PEX.

[Megs_Mom]

Hi Vicki - our daughter is now 8. Her first episode she healed naturally, although with 5 days of antibiotics in the middle for a ear infection. Total time, 4 weeks. Second episone at 6.5, again 5 days of antibiotics for ear infection at week 2, but total recovery time right at 12 weeks. 3rd time - started more mildly, but with major increase at week 8, then anti-biotics 8 weeks later, for PANDAS, now at about 98%. Total time 6 months.

 

Each time has been worse so far. Next time, we intend to aggressively go after Prendisone & Antibiotics. If that did not work very quickly, we would consider IVIG. We are doing immunological studies now to try to back up that decision. We have only done one Cunningham draw at this point, towards end of last episode. In future we will do multiple draws per episode.

 

We are, of course, hopeful that we will not need to do this again and intend to keep her on preventative antibiotics for some time (she is on 100 mg Azith, every other day).

 

Does anyone have a child that heals naturally w/o IVIG or PEX and have their Cam Kinase numbers while healed ? My son has healed naturally 3 times so far, however, I have not done blood draws on him since he is petrified of doctors now and I have to be protective of him regarding that. So, I do not know if his Cam Kinase numbers are. I know that may be beneficial to others to know if the numbers go down w/o intervention, but I just can't do that to him yet.

 

 

But your notes Vicki above say that the only way to reduce Cam Kinase is through IVIG or PEX.

[thereishope]

If it helps you feel better, my son's third episode was calmer than his second. So, your child may not continue to have worse episodes each time. His second was very scary. This last time was the longest recovery....5 months. He's now 95-98% himself. The only thing keeping me from that 100% is he tends to cry easier than one would expect when his brother makes him mad. He wears his heart on his sleeve. Something I don't remembr him doing pre-PANDAS.

 

I agree, if he ever gets sick again, I am going to beg for prednisone right away. If I don't get it, I will religiously give Ibruprofen for a couple weeks to try to inflamation as low as I can.

 

-1st episode it took about a month. He was approaching 100% when he got strep again.

-2nd episode it took 2 1/2 months. Went back to 100%. He got a streroid w/ this episode.

-3rd episode it took 5 months until I said he was himself & got OCD under control. No steroid.Today, he is 6 months since his last + strep. He is 95-98% better.

 

I see a pattern with our time lines. Almost an eerie coincidence. Also, note I think we are both the ones who saw need for interventions like ERP.

 

We should find out others timelines for who have healed naturally in the past.

 

 

 

 

Hi Vicki - our daughter is now 8. Her first episode she healed naturally, although with 5 days of antibiotics in the middle for a ear infection. Total time, 4 weeks. Second episone at 6.5, again 5 days of antibiotics for ear infection at week 2, but total recovery time right at 12 weeks. 3rd time - started more mildly, but with major increase at week 8, then anti-biotics 8 weeks later, for PANDAS, now at about 98%. Total time 6 months.

 

Each time has been worse so far. Next time, we intend to aggressively go after Prendisone & Antibiotics. If that did not work very quickly, we would consider IVIG. We are doing immunological studies now to try to back up that decision. We have only done one Cunningham draw at this point, towards end of last episode. In future we will do multiple draws per episode.

 

We are, of course, hopeful that we will not need to do this again and intend to keep her on preventative antibiotics for some time (she is on 100 mg Azith, every other day).

 

Does anyone have a child that heals naturally w/o IVIG or PEX and have their Cam Kinase numbers while healed ? My son has healed naturally 3 times so far, however, I have not done blood draws on him since he is petrified of doctors now and I have to be protective of him regarding that. So, I do not know if his Cam Kinase numbers are. I know that may be beneficial to others to know if the numbers go down w/o intervention, but I just can't do that to him yet.

 

 

But your notes Vicki above say that the only way to reduce Cam Kinase is through IVIG or PEX.

[dcmom]

Hi all,

 

This is what I am struggling with now. When you say they have "healed", what do we think that means?

 

My daughter's first episode took about 3 months to subside. Leaving her with only very, very minor ocd issues- which I feel would have gone away completely, had she had the time. She was really well for 2 months.

 

Then, post T&A she had another episode. This lasted about 2 months. She then, again, came almost all of the way back- for a few weeks. Only, to be exposed to strep at school (while on abx) and have a minor episode from which we are now recovering.

 

So, for many of us that have recurrent episodes, when they are healed- is it maybe that the blood brain barrier is healed- but the bad antibodies are still there- waiting for the next opportunity to cause an episode. Is it possible for those antibodies to go away over time with antibiotics?

 

(We are working on an appt for pex- so this is where my head is...)

 

Eileen

[thereishope]

My defintion of healed is my son doesn't have odd behaviors anymore. Behaviors that did not exist prior to Sept 26, 2008. I don't know what the status of his brain is or anything. I just know what I see and what I feel. I have a feeling that even once the inflamation goes down on the basal ganglia, there has been damage done and that needs to heal. I mean, think about it as though the basal ganglia has been bruised.

 

My son also had a strep after his t and a surgery. Do you think that when they have their surgery, hidden strep is exposed and it then multiplies? But what would confuse me about that is he was 100% back to being himself on the surgery date.

 

I don't know anything medical in regards to the antibodies, but I thought that once the infection was cleared, "normal" immune systems stop producing those antibodies and in time, the number of them reduce becasue they are not needed. That's also why steroids might be good when given rather immediate after infection. It will hinder the immune system and stop the immune system from producing more antibodies.

 

When my son is doing better, I say he is in remission. Personally, and some may disagree with me on this one, I don't think it can be cured. Cured is a strong word. If you are cured, you don't have a need to prevent strep infections.

 

 

 

Hi all,

 

This is what I am struggling with now. When you say they have "healed", what do we think that means?

 

My daughter's first episode took about 3 months to subside. Leaving her with only very, very minor ocd issues- which I feel would have gone away completely, had she had the time. She was really well for 2 months.

 

Then, post T&A she had another episode. This lasted about 2 months. She then, again, came almost all of the way back- for a few weeks. Only, to be exposed to strep at school (while on abx) and have a minor episode from which we are now recovering.

 

So, for many of us that have recurrent episodes, when they are healed- is it maybe that the blood brain barrier is healed- but the bad antibodies are still there- waiting for the next opportunity to cause an episode. Is it possible for those antibodies to go away over time with antibiotics?

 

(We are working on an appt for pex- so this is where my head is...)

 

Eileen

[KeithandElizabeth]

I do remember reading in a thread that several people who are no longer using this forum healed their children naturally using Dr. Amy Yastol's (spelling?) healing regime. I think she is renowned for her natural healing methods with Autism and Neurological Disorders. I believe you can read about her if you google Dr. Amy's Healing. I have heard that she is expensive.

 

Elizabeth

[smartyjones]

are the ones of you that are replying to this thread cases who are included in pandasnetwork original 20 or compiled 70 cases? i've not actually spoken with anyone from this forum or pandasnetwork except in these posts.

 

obviously, we're all at differing stages of the illness and working with different healing methods. i don't really have a handle on how many cases are on this forum. does anyone know?

 

please correct me if I'm wrong - it seems there was a wave and a group started by Diana - pandasnetwork states symptoms began 2007-2008. is there now a second wave beginning 2008-09? (I'm thinking in terms of school year b/c that's how my mind works now and my son began sypmtoms Sept/Oct 2008.)

 

or are most of you included in the pandasnetwork cases?

 

~Kathy

[dcmom]

My daughter had her first strep/pandas episode this past January (2009). I have been in contact with Diana (through this forum originally), periodically, she has been a wonderful source of strength. I believe my daughter's story is included on the pandas network website. I think Diana tries to keep an informal log of all current pandas kids that she makes contact with- I think she has over 90 cases. If you have not been in contact with her, it would be helpful to email a brief summary of your child's story, especially including onset and treatments to her through the pandas network website. I would also ask her to be included on her email list.

[P_Mom]

Many of us on this forum are involved/included on the Pandasnetwork one way or the other....myself included.

 

We are one of the original 20.