Alex
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From my experience with my son's Cunningham's labs, I'd say these results are of significance. I don't have his results in front of me so am going from memory. My son had the Cunningham panel 3 times. First two times Can K II was around 170 and two of the anti-neuronal antibodies were above normal. Flash forward 3 years and Cam K II was 105 with all anti-neuronals in normal range but one on the high end of normal.
At the time of the first two tests my son was severe PANDAS. By the third test he was greatly but not completely better. So even slightly elevated Cam K II of 105 was of significance.
Has your child been treated for PANDAS, or if not is he/she improved from their worst? Maybe CAM K II would have been higher at an earlier date. I'm sure Dr. T will have some great insights into these results and other things. He's great. Good luck
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Looks like the most frequent guess of the reader replies is Porphyria.
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Could it be PANDAS? Here is the link
http://well.blogs.nytimes.com/2014/04/03/think-like-a-doctor-running-in-circles/
Since Dr. Jory Goodman is the diagnosing Psychiatrist in the article, I think ithere is a good chance. Dr. Goodman blogs on Psychology Today about adult PANDAS and has even submitted medical journal articles on the subject.
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Hi Eileen and Laura and thanks! Yes, nice to have some good news. And thanks to both for all your wonderful insights over the years. I don't post much but am still on the forum fairly regularly.
Kristi, I just wanted to follow up a little. I have spoken with Diana Pohlman fairly frequently since my son's onset. Diana is the woman behind the PANDAS Network website. She would call and check in with us every once in a while because from her perspective, our son was one of the tougher cases. So hopefully it won't take so long for your son to make some decent progress.
I think it is great that your immunologist ran the Cunningham labs. Hopefully there has been some real true progress in belief in PANDAS in the medical community. At the conference I mentioned, one of the speakers was Dr. Jolan Walter, the head of pediatric immunology at Mass General, one of the most prestigious hospitals in the world. She treats PANDAS with IVIG and in her presentation put up a slide that showed the improvement in YBOCS scores in her PANDAS patients after IVIG. If you could get your immunologist to correspond with her it would probably go a long ways toward convincing your immunologist to treat aggressively and how to go about it.
I'm sure you are learning a lot quickly about PANDAS/PANS so this may not be of much value, but there are other known triggers for PANS including mycoplasma pneumonia worth testing for.
Good luck,
Alex
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Hi Kristi,
To answer your question, yes, we ran the Cunningham panel on my son last summer. His results came back as unlikely. This was the third time we had the tests run for him. The first two times were back when it was still a research study. The first time was in the fall of 2009 about two months after he had Plasma exchange, had been on antibiotics for 4 months and had just completed a two week prednisone taper. I don't have the results with me because we are traveling for the holidays but I know that all four anti-neuronal antibodies were above normal with Tubulin the highest, and Cam Kinase II of 174. Would have been in the 'Highly Likely' range If they were doing that back then. Also, I'd bet that his results would have been similar to your son's if he'd had them done prior to PEX/steroids. Fall of 2010 we ran them again after another year on antibiotics and several IVIG treatments. Results were a little better, but not much. Antibody levels had come down a little and Cam Kinase II at 169.
Fast forward to June, 2013. Our son's PANDAS now much improved, but still flaring with illness. In the almost 3 years since the last test, he had been on antibiotics pretty much continuously and had his tonsils removed 2 summers prior. He had also had a couple more IVIG's, but none since his tonsils came out. The Cunningham results now showed all 4 anti-neuronals in the normal range(Tubulin on the high end of normal) and Cam Kinase II of 106, and with an 'Unlikey PANDAS' result. Great, great news and pretty much matching our perception, although I didn't think he was as improved as the test indicated. Also, my son's Strep titres have come down slowly over the years, sort of correlating with his improvements.
I wish I could say he was completely PANDAS free but he does still get some symptoms when he is ill. Head colds cause him to become withdrawn and very easily angered, and rarely he gets an uptick in OCD and separation anxiety, but night and day from his initial onset and from the first and second times he had Cunningham panel.
My son is immune deficient and qualifies for IVIG for that reason, but he hasn't had one in over three years because we have been thinking of it as a PANDAS treatment. But whenever he would flare and we would set things in motion for him to get IVIG things would settle down before the infusion date and we would cancel. Problem is he gets a lot of colds and stomach bugs so doesn't get a chance between flares to really hit his stride. As a result, we may begin some regular IVIG's for a while.
We can't be sure exactly why he is better. Maybe just time. Maybe getting the tonsils out. Maybe slow healing from the damage caused by the initial onset. Maybe IVIG's. He still has a tough time when he flares, as does the rest of the family due to his anger, but overall good news and still getting better. He won the 8th grade spelling bee recently and says his math class is way too easy after struggling with math for years. He has a great sense of humor and is excited about his future.
p.s. At the recent North East PANDAS conference, I asked Sue Swedo if they have followed the first 50 cases that she wrote the paper about. She said they have kept track of them and that they are doing great. I wanted her to elaborate but she was swamped with other parents.
Alex
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Hi Shields,
I've posted the links below on here before. They are by a psychiatrist who treats adult PANDAS. There are two articles from the 'Psychology Today' website and a proposed medical Journal article. He is a big believer in Tonsillectomy. The reader comments to the articles are also interesting. Good luck.
Alex
http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain
http://beverlyhillsshrink.blogspot.com/2012/03/adult-pandas-bare-facts.html
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Another thing to consider would be Tonsillectomy/Adenoidectomy. Below are a few links to articles by a psychiatrist who treats adult PANS with T & A surgery.
http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain
http://www.psychologytoday.com/blog/attention-please/201203/pandas-patients-parents-and-physicians-0
Best of luck, Alex
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Wombat, glad to hear about your appointment. The same psychiatrist who wrote the articles about tonsillectomy submitted a paper to a medical journal concerning adult PANDAS. Apparently the paper was rejected by the journal, so I am not sure how good it is. However, he posted it on his website and it specifically addresses his experiences treating adults with PANDAS. Definitely worth a read and maybe something to take to your appointment. The link is below. Good luck, Alex
http://beverlyhillsshrink.blogspot.com/2012/03/adult-pandas-bare-facts.html
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Here are links to a couple of articles by a psychiatrist that claims good success treating adult PANDAS with tonsillectomy. The reader comments to the articles are interesting as well.
http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain
Good luck, Alex
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My son seems to have benefited from tonsillectomy. Since having them removed 11 months ago, he has improved significantly. He still flares with illness, but when he is healthy, he gets to a much better state then he ever got to prior to surgery. Also, his strep titers declined in the months following the surgery by 25%. That may not sound like that much, but they had remained rock steady through 2 1/2 years of agressive PANDAS treatments, PEX, mulitple IVIG's and constant antibioitics of various types. I graphed all his strep titer tests over the last three years and the drop after tonsillectomy is pronounced, and coincided with his improvements. He hasn't had his titers checked in a few months so we are hoping they continue to fall.
But it is defintiely no cure for PANDAS. As we have seen with my son, he still has the faulty immune response to illness and may always have it. Maybe we just removed a source of chonic immune response.
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For my son, loose teeth coincided with PANDAS flares seemingly every single time. For his last few baby teeth, we had the dentist pull them as soon as they were the slightest bit loose. I'm not sure he was completely onboard with the connection between loose teeth and neurological symptoms, but he agreed to do it, and that is all we cared about.
Prior to getting the tooth pulled, we would give an extra dose of antibiotics and there didn't seem to be any negative consequences.
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Jill,
So incredibly happy to read your post! A great reminder to us all that this disorder isn't a life sentience for our children. By not giving up and continuing to fight for your daughter, you have given her a great gift, the chance to lead the life she was meant to have. In doing so, I'm sure you have paved the way for many others as well. I still check in on the forum often and always appreciate your informed and compassionate posts, although this one is certainly my favorite. Kudos to you, and your daughter! Alex
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In Sept 2011, our PANDAS ds had his worst flare in 2+ years, since starting the "Saving Sammy" dose of augmentin XR. He felt miserable, went into our family doc (not terribly "PANDAS friendly") who looked at his throat and said "wow, it looks red and infected." D'oh! We couldn't imagine he could get a GAS infection on the aug XR, but something hit him. Family doc gave us a 5-day zithromax Z pack, which made a big difference... until it ran out.
So now ds (thanks to our main "PANDAS-friendly" LLMD) is on 500 mg of aug XR twice a day and 250 mg of zithromax daily. The combo seems to be working well, and he's regained the ground he lost last fall. Was it really strep? Can't say for sure... but it scared the heck out of us!
Hi Worried Dad,
I could be wrong, but I'm pretty sure Augmentin XR only comes in 1000mg tablets. If it is a 500 mg tablet, then I don't think it is extended release.
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There was an adult woman who posted on here last week about the dissapearance of her OCD after tonsillectomy. Here is the link.
http://www.latitudes.org/forums/index.php?showtopic=16392
I'm suprised it didn't get more attention then it did.
Here is a link to two articles by a psychiatrist who treats PANDAS, including adult PANDAS, with tonsillecomy/adenoidectomy. Some interesting reader comments to the second link as well.
http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain
The psychiatrist recently did a couple of video blogs on PANDAS as well. Here is a link to the most recent.
I think there is enough evidence to at least explore the tonsillectomy approach for any adult with OCD, especially if there is a history of strep.
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I heard Dr. T was going to be on TV tonight so I googled his name and found this news story from a few minutes ago. Not sure what show he is going to be on, but it looks like he could be making an announcement.
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We have Tricare Standard and it has been great. They have covered everything for PANDAS we have done, and we've done it all. Not sure if the HMO type of Tricare will be as easy.
Just heard again from one of the big PANDAS docs that those having the most success in the NIMH IVIG study are those who previously had tonsils/adenoids out.
The articles posted below I still think are very interesting and compelling. Reader comments and doctor replies to the first article very interesting as well. Also heard though the grapevine that Both Dr. Leckman and Dr. Cunningham believe in T & A for strep triggered PANDAS, although haven't heard it first hand.
If you do decide to go that route, make sure strong antibiotics leading up to, during and after surgery to prevent a flare. Dr. T I know has a specefic antibiotic protocol he likes to use for T& A.
Maybe the main point is if you have strep triggered PANDAS and you are getting constant exposure from your own tonsils, or frequent exposure, as from a family member who is a carrier, how could you ever expect to get better?
http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain
This last link is to a study on children with frequent strep throat and high ASO titers who were given T & A. After one year, 90% had ASO's fall to the normal range with a drastic reduction in strep throat frequency. Link is just to abstract. I've got the study if anyone is interested,
http://www.springerlink.com/content/h379182709163650/
Happy holidays and Merry Christmas to all. Alex
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My son is 3 months post T & A and so far we have been very pleased with his progress. It hasn't been a straight path of improvement though, including a pretty big setback when we cut his antibiotics in half. Back on full strength he made a quick turnaround and is doing really well. Maybe the same will hold true for your son.
Are you tracking his ASO and Anti DNase-B since surgery? We plan to do it every month for a year. So far the levels are down but not dramatically.
Our thoughts and best wishes with your son. Alex
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So happy for the improvement your son is seeing.
Interestingly, I read your post just after completing a phone consult with one of the big PANDAS docs, one of the ones whose last name is abreviated to one letter on here. And this doctor said that, through the grapevine, he/she has heard that those having the most success at the NIMH IVIG study are those that previously had their tonsils removed. Heresay, but interesting none the less.
Best of luck on continued improvement for your son and the same for your daughter. Alex
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Does Ian still have his tonsils and adenoids. If so, it might be worth considering having them removed. Here are a couple of interesting articles that are worth reading. The reader comments to the first article are also interesting. Good luck. Alex
http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain
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Dr. Jory Goodman in Beverly Hills.
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Hi Tami,
Our local ENT did a T&A on my son recently based on PANDAS symptoms and persistently elevated strep antibody levels. The links below are the stuff I brought to the appointment where we discussed the T & A as an option. I didn't want to sell him on the idea so much as discuss it as a possible option after PEX, multiple IVIG's and continual antibiotics hadn't worked for PANDAS and hadn't brought the antibody levels down.
The first set of links are some papers from Pubmed where tonsillectomy was used for PANDAS successfully. The springerlink page is a paper where tonsillectomy was successful at bringing ASO titres down in almost 90% of patients by the one year mark after surgery. The link is just to the abstract. I paid for the paper and brought to the appointment. The last two links are a couple of articles on the 'Psychology Today' website by a psychiatrist who treats PANDAS with T & A surgery. He claims that the international approach to PANDAS is T & A surgery. The reader comments for the first article are very interesting as well. He also makes it clear that he doesn’t believe you have to have elevated ASO/ anti-dnase b for T & A to be warranted. We corresponded with him and he got right back to us. I imagine he could put you in touch with one of the ENT's he uses if it would be of help. I think he is too confident that T & A is the solution to PANDAS but I think there is enough evidence to support it being part of the solution in certain cases. We don't regret it so far. PM me if you have any other questions.
Alex
http://www.ncbi.nlm.nih.gov/pubmed/21466900
http://www.ncbi.nlm.nih.gov/pubmed/20207613
http://www.ncbi.nlm.nih.gov/pubmed/18817720
http://www.ncbi.nlm.nih.gov/pubmed/12880661
http://www.springerlink.com/content/h379182709163650/
http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain
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Hi Melanie,
My son had PEX at Georgetown though the same process as DCMOM's kids. He had a great initial response but by 3 weeks he was starting to slip and by 5 weeks he was back in a pretty severe exacerbation. I know that DCMOM's kids had previously had their tonsils removed at same point prior to PEX. If your son has elevated strep titers, this might be something to consider prior to PEX.
PowWow and Oivay, do your kids still have their tonsils?
For my son, his ASO was 200, and Anti Dnase B was 480, in his blood work done at Georgetown prior to PEX. At the conclusion of the PEX his ASO was 20(anti-dnase b not tested),so the PEX had effectively replaced his plasma. By the 5 week mark when he was back in an exacerbation, his ASO was back up to 200 and anti dnase b was back to 480. So something made it go back up, either an ongoing infection of some sort (tonsils maybe), an exposure to strep from somewhere else, or maybe autoimmune.
If we had it to do over again, we would have had the tonsils out before we went down the PEX road. His tonsils are now out and so far things are going fairly well. Also, after PEX I think we should have worked much harder to prevent strep exposure or infection of any kind. He was only on a very low dose of antibiotics post PEX, I think 2 doses of azithromycin per week, and his post PEX flare coincided with a tooth infection.
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JAG10 -- it seems the researchers have enough contact with patients over the past 20 years that have passed puberty that they should have some information on weather it will remit , and what chances of that happening are!
There was a 10 year follow up study with pandas patients that was sppossed to published last year - and never got completed (or published). Some of that data must be somewhere.
That to me would be the best question, how are the kids from the original studies doing today, and what, if anything, correlates to the best long term outcome?
Another PANDAS parent told me that her son's psychiatrist, who corresponds frequently with Dr. Leckman out of Yale, said the Leckman says that the best long term outcomes were in those who had tonsil/adenoidectomies. Complete hearsay at this point, but I'd love to ask him if that was true.
I'd also like to ask Swedo if for those kids with elevated ASO/ ANti-Dnase B, if the lessening or disappearance of symptoms correlated with the lowering of the strep titers.
I'd like to ask Dr. Cunningham if there is a timeline for a commercially available version of the labs she was doing for her PANDAS study. I'd also like to ask her how significant a role she believes that lyme disease and co-infections plays in PANDAS. There is so much focus on this forum on lyme, just wondering if the experts are on board with that.
Wish I could be there.
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Hi Lisa,
Keep pursuing all avenues and you'll get an answer. Does your son have elevated ASO and Anti-DNaseB? If so it might be a good idea to focus on that as well. I don't want to say that the lyme focus is false or wrong, but I think sometimes we get too far away from the strep focus, since, as far as they know, this is primarily a syndrome caused by antibodies to strep.
This article has been posted before. http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain . It is by a psychiatrist who believes in tonsillectomy for PANDAS and claims that the international literature supports this approach. At the bottom of the article you can access the reader replies, which the psychiatrist responds to most of. They are pretty interesting.
I know that tonsillectomy isn't necessarily the answer but I think for any of us, keeping the focus on eliminating all sources of strep, be they in the child's body, tonsils or nasal cysts, etc, or external, as in living with a carrier, should be on the list, if not at the top, of priorities.
Alex
PANDAS in Adults
in PANS / PANDAS (Lyme included)
Posted
Hi,
There is a psychiatrist who treats adult PANDAS who posts on the Psychology Today website. He has a few articles on the subject. I'll post links below. Very interesting and heart wrenching comments from PANDAS suffererers and parents as well. He also submitted a journal article on adult PANDAS. Link to that below too.
Good luck!
Alex
https://www.psychologytoday.com/blog/attention-please/201107/evil-pandas-part-ii-adult-affliction-treatment
https://www.psychologytoday.com/blog/attention-please/201203/pandas-patients-parents-and-physicians
https://www.psychologytoday.com/blog/attention-please/201501/adult-pandas-seek-and-ye-shall-find
https://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain
https://www.psychologytoday.com/blog/attention-please/201203/pandas-patients-parents-and-physicians