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Back from Oklahoma and visiting Dr. Cunningham


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Hi Everyone!

 

I am back safely! :D I had a wonderful trip. I can't tell you how grateful I am to have been given the opportunity to visit Dr. Cunningham......it wouldn't have happened without all of you guys! THANKS! An extra THANK YOU to Vickie! ;)

 

Dr. Cunningham is so kind, generous, and caring. She is so grateful for what we parents have done. She and her staff are wonderful and very dedicated to their work...they really care. I felt so at ease with all of them...I can't really explain it, but, it just felt right, they are an awesome group. There is no doubt in my mind that we did a great thing for PANDAS by winning this grant. I also firmly believe that Dr. Cunningham and her staff are KEY to unlocking the PANDAS mystery. The work they do is amazing. They work VERY hard everyday......they are swamped and doing what they can every day. The PANDAS samples are rolling in more and more each day. Last Friday they had 17 samples arrive. It takes about two days to run one sample, then, many calculations need to be made. They have one person running Cam Kinase, Kathy Alvarez, and Adita runs the ANA titers. They are both long processes. They could sure use more help. If you sent samples in and are waiting for results, please be patient.....they are doing everything they can and will get the results to you....it may be a wait, just, again, be patient. There is so much I could say, but, in a nutshell, there are no definitive answers.... YET! I believe there will be answers soon. One of the biggest things Dr. Cunningham is doing with the funds is hiring a research immunologist from Canada who is going to join the staff to study PANDAS. He has already been interviewed and has accepted the position...this is possible because of our funding!!! Dr. Cunningham is substantially funded to study the heart, but, not PANDAS, so, she has to dedicate much of her time to heart study. Hiring this immunologist will be a great help in the PANDAS research. Funds will also be used to purchase supplies. This is what we need....an immunologist to unlock the PANDAS mystery.

 

I can answer some of the questions we have all asked. (many of which we already knew)

 

1. Strep titers are in NO way diagnostic of PANDAS. Dr. Cunningham says she "took care of that" at the OC conference. For a PANDAS diagnosis (meaning in relation to strep)... a positive culture OR high strep titers are needed for the diagnosis...however, the child may be tested to late to show either, or, may not mount enough of a response to show strep at all. It really is complicated.

 

2. Just because strep is not cultured from the throat does not mean that the strep is not elsewhere. Could be in the gut, sinuses....it could be vaginal or perianal. So, negative throat culture does not mean no strep.

 

3. Strep is not the only cause of the neuropsychiatric symptoms. Many other viruses/bacterias can result in the same type of syndrome...but, it is still the same type of autoimmune dysfunction/problem. You won't find strep anywhere in this case.....this would be the PITANDS syndrome. This can also produce high Cam Kinase.....particularly Lyme...it produces high Cam K results. In a viral cause of symptoms, antibiotics will not help...but, steriods can be given to bring the episode under control if the episode is bad enough. Strep induced (bacteria induced) episodes should resolve/diminish with antibiotics.

 

4. If a child is not treated, over time it is possible that the brain can get so used to the new way of functioning that the problem becomes chronic as the brain retrains itself to the new way of dysfunctional functioning. In this case, it seems no virus or bacteria need be present. But, it is still the result of PITANDS/PANDAS syndrome.

 

5. IVIG can't be considered a cure. There have been no studies long term on these kids to proclaim cure, and, the data does not support it. IVIG can be extremely helpful, but, we can't say cure as of yet. A study will soon take place where higher doses of IVIG are going to be tried. Dr. Cunningham will get samples of the childs blood before and after this new IVIG study to see what changes take place. She feels IVIG should be reserved for the more extreme cases....the milder ones can be managed with antibiotics and steroids. It seems the IVIG temporarily dilutes the problematic antibodies.....we don't know yet if it "reboots" the immune system, we just don't know. Same goes for PEX...extremely helpful in severe case...but, can't say cure yet.

 

6. If your child is doing well and being managed with antibiotics and/or steroids, it is quite possible that over time, the immune system will "right itself" as they get older. This is the hope. This is what she stated regarding my boys. She did say that I would have to deal with it most likely until they were around 20.

 

7.They are currently focusing on the D1 and D2 receptors. They are NOT certain as of yet, but, high Lysos seem to be correlated with tics,and,sometimes once they get high, they can stay there for quite a while.....the Anti-D1 and D2 seem correlated more so with OCD and behaviors. Again, this is NOT for certain yet. They are working on it. If your child has "normal" lysos at 320, it really is double the normal mean and most likely there will be problems. However, "normal" children can have an anti-lyso number of 320.

 

8. She will soon be attending a conference on Lyme. However, if your child has PANDAS, it DOES NOT mean he/she has Lyme or that Lyme caused the problems. But, some children do/can have both conditions.

 

9. The NBC shoot. Well, like I thought, I really had no say on how is was run or what I could choose to say. It was all run by Pepsi and the camera man had a sheet of set questions he was to ask. I had zero prep on the questions. He just turned the camera on and started asking questions while filming. The questions related to the Pepsi Project...why I started it...the impact we wanted, etc. I did my best. All the staff and the camera man say I did really well. I hope so. The camera man asked me to go back to the feelings I had when this all started and to try to explain how I felt. I started crying...just going back there. He filmed about 10-15 minutes of me answering questions, but, it will be a 30 second clip. He also filmed the staff working and some footage of Dr. C speaking with me. Again, it will be a 30 second clip and will only include what Pepsi wants it to include. I have no idea on air time, etc. I will keep you informed on that. I could only show up for 3 seconds or so...he said the clip will be quick. I am sure they will pick the strongest points. If the footage is good, it can really make an impact. I am hopeful.

 

10. They are looking at the drug Haloperidol at being a possible effective treatment for PANDAS. This is also part of the research with the grant money. Seems Haloperidol can block D1 and D2 receptors, effectively diminishing PANDAS symptoms. However, if given in the wrong doseage, given for too long, or if the body can't clear it effectively, it can have the opposite effect, making things worse. They have shown this reaction in mice.

 

 

I am sure I am missing several points. I will post as they come to me. Bottom line, again, we just really don't know the PANDAS answers yet....but we are getting there. More research is needed. The 50K will help, but, it is not enough!! She needs more staff...more money to study PANDAS. I want to raise more money for her....I truely believe, from what I saw, heard, and experienced, she and her staff can unlock the mystery. I am thinking of collecting donations. I already have $200 donated, sent to me, but, set aside for her. I don't know if you guys would trust me enough to send donations to me, and, over a 6 month period or so, I would collect them, put them in a special PANDAS fund in the bank, and then present her with the additional funding in one lump check. I believe lump sums are bettter than donations rolling in haphazardly. There are 1200 plus members of the fan page....if we all donated what we could...no set amount...we could raise a subatantial amount of money. They need it...they need help and more funds. I don't want to see this research fizzle out because of lack of funding. What do you all say???

 

Oh, I will be posting pictures on the Pepsi Refresh Project PANDAS page.

Edited by P.Mom
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My son experienced #4 on the list. The PANDAS OCD morphed into "regular" OCD. He just had so many exacerbations back to back that the OCD became part of him. I knew something was going on when he stopped following the shedding pattern I saw in exacerbation #1 and #2. With those, the OCD went away without intervention besides antibiotics. With #3, all other PANDAS symptoms went away but the OCD. It wasn't until we stopped waiting for it to go away on its own and started strongly tackling the OCD head on did he overcome it that time. I am so happy to say he has been OCD free now for almost a year! But I can totally see how an adult with OCD may have had it all started with a PANDAS exacerbation in childhood.

Edited by Vickie
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So point #4 - Lyme produces high Cam Kinase levels? Did she say, does Lyme also effect the d1/d2, lyso's, tubulins etc?? Asking for purely selfish reasons. We had 167 CamKinase but all normal antis. Dr Cunningham said they didn't know why the 2 didn't match at the time. Thanks so much for sharing your visit.

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IowaDawn...Money is not flowing into OU at this time. She still has yet to apply for the grant in November. (for the IVIG study)

 

WornoutMom....She didn't mention much of anything else regarding Lyme...no mention of it in relation to the other titers. When you said you had normal anti's......what were the numbers. Some of the normals aren't so normal. My younger son had Cam K of 162 with "normal" ANA's....but, after speaking with her...his "normals" weren't so normal.

 

Lynn....the reporter apologized over and over for making me cry...but, he said he did it for a reason...just like you said....he said emotion gets the attention. I don't know if they will show any of the clip of me crying....but, we shall see.....it is extremely difficult to talk between tears. :( Also, he has a child with austitic qualities...possibly leaning toward Aspergers...so, he was very interested in our story.

Oh how things work out......

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Thanks, PMom! Really looking forward to those news clips . . . don't be shy! Let us know when they're scheduled to hit (assuming Pepsi tells you!)!

 

Vickie, I can relate immediately with #4 also. I've been wondering all along if that might not be the case, so I guess this news from Cunningham is somewhat validating, though a little sad, too. While I'm committed to taking all the steps required for helping my DS manage the stubborn remains of the OCD, I had hoped that maybe, just maybe, despite having dealt with this stuff for probably close to 10 years in ignorance of the infectious end of things, we might be able to get him back to no-OCD one day.

 

I guess I'll continue to hope that this could still occur eventually, but I will be ecstatic at "sub-clinical"! :P

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Mom, my son was treated with antibiotics quickly with each exacerbation and he STILL had residual OCD. I think that since he was 5 and since he was treated quickly is why he was able to overcome the residual OCD in a matter of months when we finally tackled it. It was my gut that told me that he was past his PANDAS exacerbation. With your son, he has had it longer, it probably will be harder to overcome it. But make sure you feel you have done everything medically you can for your son.It isn't until the PANDAS is completely tackled can he fully overcome the OCD. The PANDAS reaction is forcing him to have the OCD and not letting him be open to fully overcoming it. I have a feeling one day you will reach that "no OCD day". It's a puzzle. it takes a while, but you'll figure it out.

Edited by Vickie
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My son experienced #4 on the list. The PANDAS OCD morphed into "regular" OCD. He just had so many exacerbations back to back that the OCD became part of him. I knew something was going on when he stopped following the shedding pattern I saw in exacerbation #1 and #2. With those, the OCD went away without intervention besides antibiotics. With #3, all other PANDAS symptoms went away but the OCD. It wasn't until we stopped waiting for it to go away on its own and started strongly tackling the OCD head on did he overcome it that time. I am so happy to say he has been OCD free now for almost a year! But I can totally see how an adult with OCD may have had it all started with a PANDAS exacerbation in childhood.

 

Vickie,

 

We were told this about our son from our pediatrician, neurologist and behavior therapists...that OCD basically becomes a learned behavior and can be difficult to break even after all other symptoms go away. It's the main reason we aren't 100% back (between flare ups when he's exposed that is...but those usually only last 3-4 days). My understanding of it is, the younger the child, the more likely the OCD is to remain since the brain is making new connections at such a rapid rate. Since our guy is only 2, it's really one of our biggest concerns. We're doing behavior therapy and focusing hard on the OCD, but I have to admit, we're still so shell shocked from our initial exacerbation that we tend to give in ton his rituals a lot to make life flow better. I've realized working with the therapists, that in our case, since he's so young, it'll almost be like training a dog - you're really training the master more than the animal :lol:

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Thank you so much for this report and I can't seem to ever say enough thanks for your work in getting this grant. You are truly a blessing to our kids.

I think donations would be great but also we as parents can only give so much. I'd still love to see local fundraisers as well where we could then send the money on to you and therefore pass it on to Dr. Cunningham.

 

Do you think that you could set up a Paypal account or something of that sort so that people outside of our board could feel more secure donating? I would trust you but those who are not on this board may have an issue. I know there has been discussion of an ebook and I'm eager to participate but I wonder about other opportunities...basket raffles, pasta dinners, walks-local opportunities aka "ways to hit other people up for money besides just us PANDAS parents" lol

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Luckily, I think it is our kids young ages that also makes it a little easier to retrain their brains back to "normal" thinking. Continue to give him Omega 3's too. That helps with the brain. I don't think I will ever stop giving my son them. When we were helping him overcome the residual OCD, we choose what we would would work on and still gave in to other OCD rituals until it was that ritual's turn to be tackled. Just make sure if it's a tendency you are trying to tackle, that one you don't give in. That will empower that nasty OCD.

 

 

My son experienced #4 on the list. The PANDAS OCD morphed into "regular" OCD. He just had so many exacerbations back to back that the OCD became part of him. I knew something was going on when he stopped following the shedding pattern I saw in exacerbation #1 and #2. With those, the OCD went away without intervention besides antibiotics. With #3, all other PANDAS symptoms went away but the OCD. It wasn't until we stopped waiting for it to go away on its own and started strongly tackling the OCD head on did he overcome it that time. I am so happy to say he has been OCD free now for almost a year! But I can totally see how an adult with OCD may have had it all started with a PANDAS exacerbation in childhood.

 

Vickie,

 

We were told this about our son from our pediatrician, neurologist and behavior therapists...that OCD basically becomes a learned behavior and can be difficult to break even after all other symptoms go away. It's the main reason we aren't 100% back (between flare ups when he's exposed that is...but those usually only last 3-4 days). My understanding of it is, the younger the child, the more likely the OCD is to remain since the brain is making new connections at such a rapid rate. Since our guy is only 2, it's really one of our biggest concerns. We're doing behavior therapy and focusing hard on the OCD, but I have to admit, we're still so shell shocked from our initial exacerbation that we tend to give in ton his rituals a lot to make life flow better. I've realized working with the therapists, that in our case, since he's so young, it'll almost be like training a dog - you're really training the master more than the animal :lol:

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In regards to #4, did Cunningham say how long it takes for PANDAS to become chronic? My son is 8 and he has had PANDAS since he has been 5. He started treatment about 2.5 years into PANDAS. Is that to much time? Is it to late for him to get better?

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