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Back from Oklahoma and visiting Dr. Cunningham


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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?

I would think its never too late. The brain "learns" by building neural pathways. The more those pathways are used, the more automatic they become- that's why skills get better with practice. But, since everyone continues learning throughout life- that means neural pathways can be continually built and strengthened with practice throughout life. If the OCD behaviors have become very strong (through years of "practice") it just means it will be harder to undo that learning-not impossible.

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One question. I've always heard the mention of vaginal/perianal strep. As far as I've read, that's group B strep. I thought that GABHs (Group A Beta Hemolytic Strep) was responsible for P.A.N.D.A.S., not group B anything? Am I mistaken?

GABHS can infect the vagina.

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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.

 

 

Thanks for the information. How wonderful to be able to meet Dr. Cunningham and all her staff. I wonder how many kids with high Cam K have diagnosed Lyme? My son has High Cam K,anti lyso and Anti D1. Its amazing how he fits right in with research. everyday I still doubt I have made the right decision to teat PANDAS because there is no concrete eviddence. He is getting better, but still it is frustarting that there is no sound research to back up the reason behind him getting better.

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PhillyPA....no, she did not mention a time frame to become chronic....I don't think there is one, and, it doesn't always happen. I think, regarding your situation, there is every reason to be hopeful and expect recovery for your child.

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PhillyPA....no, she did not mention a time frame to become chronic....I don't think there is one, and, it doesn't always happen. I think, regarding your situation, there is every reason to be hopeful and expect recovery for your child.

 

If you consider Dr. T's theory of toll-like receptors becoming overloaded after infections "pile up" on the pathways, it may not be a period of time per se , but how many viral and bacterial illnesses the child has been exposed to. For my dd10, she went "chronic" March, 2007 (after 4-5 years of PANDAS) and after myco-p "piled-on" her system. She went untreated (for PANDAS) for about 8 years, yet has responded really well to IVIG to break the "chronic" state and she is informally judged to be 75-80%.

As far as cure, I didn't specifically as Dr. K about that word, but what he said to do in our case is watch dd very closely, that OCD is her "sore throat" for strep and should be treated aggressively as should all other infections in the household. If we treat any episodes of OCD symptoms with high dose abx for 14 days, we should be able to prevent the chronic autoimmune process from being set into motion again. This does not sound like "cure" as we have bantered about, but it is treatable, manageable, hopeful, and successful for my girl ............and I'll take it everyday of the week and twice on Sundays!!!

 

That being said, that's what SHE needed. She was THAT bad and couldn't get better by less drastic measures. But coming from a place that was so sad and hopeless to now; we just all feel like we've been kissed by angels!

 

Kelly, as far as donating.... if it is done through registered non-profit organizations, donations can be eligible for employer company matching gifts. We should maximize any parents who have that as an option through their jobs.

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Just so everyone knows....regarding IVIG. Dr. C really did not say much about it. I tried to get her to tell me if I should do IVIG for my boys, you all probably know how I have been going back and forth on it.....she would only say that it was up to me! She wouldn't say no, and, she wouldn't say yes. And, she never said that it did not work. She felt IVIG was warranted in the more severe/chronic cases. She stated she was conservative in her approach...and to try antibiotics first, then steroids. If you can manage your child with these, then great, why take the risks of IVIG if not needed. If you can't bring your child out of the episode and/or things are bad, then, more aggresive measures need to be done. (IVIG/PEX) All the PANDAS docs respect one another.......Dr. C, Latimer, and Dr. T are just more conservative when it comes to IVIG....Dr.K is not....and that is okay....it is up to the parent to decide what to do based on how they feel their child is managing.

But, Dr. C would also not put IVIG and cure together at this point. We just don't know yet.

So, the IVIG questions remain.

 

Also, I know some discussion has been made in regard to impetigo and PANDAS. Some have said impetigo can't cause a PANDAS flair because it does not raise ASO. Well, I am going to be bold and say that particular belief is definitely false. She showed me a slide of the "faces" of strep.....strep throat, impetigo, cellulitis, etc. I piped in and said my PANDAS child had a definite flair with impetigo last year....she smiled and said "of course."

Edited by P.Mom
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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?

I would think its never too late. The brain "learns" by building neural pathways. The more those pathways are used, the more automatic they become- that's why skills get better with practice. But, since everyone continues learning throughout life- that means neural pathways can be continually built and strengthened with practice throughout life. If the OCD behaviors have become very strong (through years of "practice") it just means it will be harder to undo that learning-not impossible.

 

I completely agree with this. Our daughter's PITAND went Chronic when she was untreated at age 6 - we still hope for a way to break that. But in the meantime, we do everything that we can to fight on both a medical front and on a "OCD tools" front. Despite some challenges, she is a happy kid now. We are just seeing her grandparents (first time since last year) and they are astonished by the changes.

 

At the OC Conference in DC, I was talking with a therapist that recently treated an 80 year old woman who had OCD most of her life. She was able to break down her rituals, and lead a normal life for the first time. I am a firm believer in there being hope for everyone. Dealing with the medical and the psychological roads can be challenging, but for us, was the best way to get the final 5% or so back.

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Okay, thought of something else. She told me that what is basically happening in PANDAS (which we basically already know) is that illness/infection is opening the blood brain barrier and allowing the offending antibodies to do their dirty work. She also stated that stress can open the blood brain barrier allowing the same thing to happen. That is why our kids flair when under stress, are nervous or excited.....opens blood brain barrier.

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Okay, thought of something else. She told me that what is basically happening in PANDAS (which we basically already know) is that illness/infection is opening the blood brain barrier and allowing the offending antibodies to do their dirty work. She also stated that stress can open the blood brain barrier allowing the same thing to happen. That is why our kids flair when under stress, are nervous or excited.....opens blood brain barrier.

Our dd did!!

I thought she was doing good befor we got IVIG

and I tried to put her into her own bed with me sleeping with her

OH that was a mistake,she cried for 2 days she was mad at me and mad at

herself for being mad at me.

that is when we knew that we had to go see Dr.k

because the abx's just was not doing the job of getting

her back.

Tracie

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Okay, thought of something else. She told me that what is basically happening in PANDAS (which we basically already know) is that illness/infection is opening the blood brain barrier and allowing the offending antibodies to do their dirty work. She also stated that stress can open the blood brain barrier allowing the same thing to happen. That is why our kids flair when under stress, are nervous or excited.....opens blood brain barrier.

This worries me. For the kids who still have a lot of residual OCD- working on that is STRESSFUL! So, you can't do it w/o opening the BBB? So, that means you have to make sure those naughty little antibodies are kept at bay.

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