kimballot

Thank you, Mary. You are always such a kind and steady influence on us all! Enjoy your Holiday!

I am sitting here thinking how different my life is than last year at Thanksgiving, when I wondered if DS would even be able to leave the house to join the family for dinner. Certainly not fixed or cured, but so much better! The Holidays can be so difficult for families of children with PANS. I thought it might be good for us to think about some of good things that have happened to us, as individuals or as a community, over the past year. For starters, I am thankful that the PANS paper was published in April 2012 and that the IOCDF has it available on their website!

I am not sure what you are asking... I know that Doryx is long-acting doxycycline and is frequently used in lyme. Bactrim is frequently used in bartonella. Are they helpful in PANDAS? I know I've not seen reports of them used for strep among our kids. If your child has lyme and the lyme is triggering PANDAS (actually - triggering PANS), then YES they would be used for PANS. My son was on doxy & azith for over a year and was recently changed to bactrim & azyith due to signs of bartonella. He has problems with mycoplasma and lyme/bartonella. He is not positive for strep.

So very glad to hear this! Thanks for posting!! Best Wishes!

Hayles, I am so sorry you have to go through all this run-around and so many different doctor opinions. It sounds like there is SOMETHING going on with your son's blood... What does the doctor mean by "his white cell count is very low"? one type of white blood cell produces antibodies, which is what is measured in the titers you have talked about. Here are my questions: 1. What, exactly, is measured in the low white blood cell count?\ 2. Are his overall number of IgG and IgA antibodies low? 3. Are specific sublasses of IgG and IgA low? 4. How are his strep pneumonaie antibodies? I believe there are 14 different kids of s. pneumonaie titers they measure - is he at a protective level in all 14? (s. pneumonaie is not the same as the strep in strep throat -but it is a frequent cause of sinusitis) 5. What is his ASO and dnase B titers now and how do these compare to the last set of ttiers? 6. What are his epstein barr levels? 7. What are his mycoplasma levels and lyme disease (and coinfection) levels? 8. What are his c3d levels? (a measure of immune complexes, which can indicate autoimmunity). Given all of the above - really- your best bet is to get a referral to a good immunologist who can help to parse through your son's immune responses and measure even more things that my Non-MD brain does not know. I wish you much luck - keep us posted!

Thank you for posting this update. It sounds like you are being told many different things that really seem to be covering many bases - Your son did not really have scarlet fever, and his ASO titer is descending but was never completely elevated, he has tourette (though he really does not seem to meet the criteria for tourette), and some of what you are seeing is pos-infectious, but it is not PANDAS and he you do not know what the infection was... Do I have that correct? I've not been on the forum much of late, so I've not followed your story in detail. I apologize if what I am posting below is repetitious for you. You must be very confused, and I feel for you having to navigate this path yourself. I think the PANS article found here http://www.ocfoundation.org/uploadedfiles/MainContent/About_OCD/PANDAS%20to%20PANS%20-%20Final%20form%20for%20Pediatrics%20%20Therapeutics%202012.pdf would be helpful for your psychiatrist if she has not read it yet. It really emphasizes that PANS is not due solely to strep. Also, the IOCDF website, in general, is great if you've not been on there yet http://www.ocfoundation.org/PANDAS/ Regarding your son's titers - you mention that he had all the clinical symptoms for scarlet fever, but now they are telling you that his ASO was never elevated "enough" to be strep, but the numbers are descending. I am not sure what that means. First, I would get the actual numbers to keep in your file as they may present a pattern in the long run that another doctor could interpret. Second, if the numbers are descending then they must have been reacting to SOMETHING. It is not uncommon for children who are immune deficient to NOT produce enough antibodies to make the titers reach what would be considered "elevated" for other children. However, if they are elevated for YOUR child, then there is an infection. Also, you should be measuring Dnase B in addition to ASO -as DNASE B tends to rise and fall a bit later than ASO and can add to your pattern. You mention that you son is "always" sick. Have you had him seen by an immunologist and had him fully tested for immune deficiencies. Again - if he is immune deficient then the ASO titers may not be accurate. Best wishes to you as you blaze your trail!

Ok... I don't mean to be paranoid... but is the Facebook Page "Free E-------- W---" gone? I tried to look at it and it says it is not available.

THIS is what it is all about!

Thanks! That is so interesting. The cells that produce antibodies are made in the bone marrow, so this really makes sense! Thanks!

I would like to help in any way I can. My son was in a locked psych ward on two occasions. We admitted him voluntarily as we could not keep him safe at home. The personnel did not have the background to treat him and were not interested in admitting that this was a post-infectious incident. However, to their credit, they also did NOT stop his antibiotics nor did they introduce any neuropsych drugs. They did have CPS investigate our family, which was heartwrenching, but the CPS worker was very good and left with a good education on PANDAS and the case was dropped as "unfounded". I realize that my situation could have easily turned into what the Wrays are facing now. I commend anyone who is going public and facing media regarding their PANDAS stories. However, I want to say that if we are going to see real change we need to EDUCATE health professionals and CHANGE our healthcare system. I would like to see a concerted effort to develop some sort of continuing education module for health care providers on PANS. It would need to be 100% evidence-based, which means that many people would feel "left out" because the specifics of their child were not addressed. However, if we can develop an evidence-based protocol for PANS evaluation and treatment (it could be based on the PANS 2012 article), then we have something to work off of. The module could be put into a "stock" power point presentation with specific talking points and could be delivered by residents and fellows from some of our PANDAS-friendly University affiliated clinics (eg; Yale, Columbia, Rothman center in florida)at medical conferences. The residents/ fellows would bulk up their resumes and teaching experience, and the information would get out. It could also be offered to medical schools throughout the country and could easily be videotaped and offered via distance learning as part of the infectious disease or immune system component of medical school. Once physicians are educated about PANS then protocols can be established - followed by guidelines and "best practice". All of these things are what physicians follow. The first thing we need to do is come together as a community, though, and recognize that we will never all agree on what needs to be in such a protocol. It would be a work in progress. The second thing we need to do is STOP any competition among PANDAS support groups. It seems that all groups are coming together to support Elizabeth. Surely all support groups could come together to promote PANDAS education and policy change. There is plenty of work for all. One of the greatest moments of my life (and I am not kidding) is when we won the Pepsi Refresh award. We all came together for that purpose and WE WON. We can do it again!

Arial - so sorry you are on this roller coaster. I am just wondering if your son's vomiting was DEFINITELY anxiety or if there might be a virus in the house.. ?

I received Beth's email and saw an earlier post on her facebook page... but I am wondering if anyone knows any specifics about this family. From the facebooks posts it looks like anorexia is an issue. Are details posted/ published anywhere. We were in a similar boat and had CPS involvement at the height DS exacerbation. I would love to help in any way I can, but I don't want to be a bull in a china shop... any links would be helpful. Thanks!

With all of those infections... how is her immune system? Could you get a dx of Common Variable Immune Deficiency? Be sure to have all subclasses of antibodies checked as well as s. pneumoniae titers - not just total IgG levels. If she is CVID or other immune deficient, and has had that many infections then she should be covered for IVIG via UHC. Also - document loss of function such as missed days of school or work. You have the best neurologists on your case! Sounds like more than PANDAS for sure... keep digging!! Best wishes!

From what I have read, it seems that it is quite possible that the autoimmune response of PANS can continue even after the infection has subsided. The inflammation is the main initial culprit, from what I understand, as it allows the antibodies to cross the blood brain barrier and mistake basal ganglia cells for strep. If the antibodies mistake the basal ganglia for strep (or some other infectious agent) then it is possible that they will continue to reproduce auto antibodies and the inflammatory process will continue - even after the initial infection is gone. The body thinks there is still an infection. I know this is an overly simplistic view of things, but it is my way of making sense of it. If symptoms continue even after all major infections are gone, then I think you need to: 1. Check for infection in family and friends as the child can produce antibodies in response to the threat of infection (others have mentioned this_ 2. Be sure to check for difficult-to-find infections, such as lyme. 3. Do whatever you can to reduce inflammation, including diets, some antibiotics, and other supplements. 4. Ask the doctor about a course of steroids (if there is no infection), as steroids can stop the autoimmune process. 5. Consider IVIG if all else fails and the child continues to have a severe autoimmune response. Just my thoughts on this... Best wishes!

I agree with what others have written. Dr. Leckman is a wonderful researcher. He tends to be more in the "middle" when it comes to PANS - not afraid to say that PANS exists (he is one of the authors of the PANS paper http://intramural.nimh.nih.gov/pdn/PANDAS-to-PANS2012.pdf ), or that PANDAS exists or that we need to know more ( http://www.njcts.org/docs/ImmunobiologyofTDandPANDAS.pdf )... but also not afraid to be a part of research studies that do not back up all of our "theories" ( http://www.ncbi.nlm.nih.gov/pubmed/21241948 ). Research, however, is not the same as clinical practice. One needs to apply strict rules to research studies to make them "pure" .... but real-life kids are not so pure... and the criteria change with the times and political waves. We cannot let that stop us from getting the best help for our children. I think most parents of children with TS would agree that OCD is a part of TS - even if it is NOT infection-related. I pulled this from the pinned threads at the top of the forum http://www.latitudes.org/forums/index.php?showtopic=6153 I know that list really helped me to understand how many of my DS's behaviors were OCD when he was younger. I am not a wimpy Mom - I had many years of working with kids under my belt and a well-functioning older daughter when I had to deal with my son's "quirks", insistence, separation anxiety, and irrational fears from a young age. Not understanding that it was OCD was a huge problem as I thought I needed to be more firm - which only set up a power struggle and discord in the home. Eventually I just started giving in or even anticipating his rituals without realizing it to keep the house calm. The fact is that I needed to address my son's immune system AND his behaviors and I was not doing a very good job of either. My son is now 15 and he is finally receiving the immune treatments he needs. The ramifications of 14 years chaos and poor medical care have taken its toll though. My husband and I recently separated. My daughter has missed years of having a functional family, and my son is 15 years old and very bright and social, but is just now developing school and work behaviors that he should have developed 5 or more years ago. My suggestion to you is to get a second opinion about the medical piece, AND to learn as much as you can about parenting a child with ADHD/OCD/ODD. It sounds like you need a two-pronged approach.

JAG - I am ROLLING with laughter. I think you need to write this up and submit it to your local paper as an opinion letter. The CHAPLAIN!?! A full TRAUMA team!?!

My son's IVIG was started when there was inflammation but no blockage as he had undergone surgery a few months prior, and ENT had done scope to check for blockage. Sounds like ENT is on the right track to check for blocakge. I am not familiar with balloon sinusplasy, but would say that anything to reduce trauma to the sinuses when cleaning them out would be worth it! My son's mucocele was a result of the sinus surgery (apparently you only see mucoceles in kids who have had sinus surgery). Are you doing a nettipot or nasal rinse? we have found that this really helps to keep things clean and flowing. We used to use the regular nettipot, but switched to the nasal cleanse irrigation bottle with the pre-mixed packets (http://www.amazon.com/s/?ie=UTF8&keywords=nasal+rinse+bottle&tag=googhydr-20&index=aps&hvadid=7933135185&hvpos=1t3&hvexid=&hvnetw=g&hvrand=21139720811196338185&hvpone=&hvptwo=&hvqmt=b&ref=pd_sl_3hqh33ypyx_B ). I used distillled water for this as there have been reports of infection from tap water (I know that is rare- but why risk it?) Truthfully, my son has only done this 1-2 times over the past year as his sinuses are really not inflamed anymore. Also - ask Dr. B about checking trough levels. My son was having a tough time when we did 1.5g/kg every 8 weeks. We checked trough levels just before the 8 week IVIG and antibody levels were even lower than before we began IVIG. Dr.B upped the IVIG to 2g/kg and I increased the frequency to closer to be closer to 6 weeks. Both of these really helped with symptom relief between IVIG. I would NOT recommend this regimen for anyone who does not need it. I recognize that this is ALOT of IVIG going into my son... but he really is a complex case.

DS15 started on antibiotics at 4 months of age for difficulty breathing / sinus infection (they only have one tiny sinus at that age!)... Could not take him off or even taper down to prophylactic ABX without infection re-occurring. Had adenoidectomy at 18 months of age, pneumovax at 2 years, pneumovax at 4 years, allergy shots starting at 4 years, major sinus surgery at 5 years, tonsilectomy and surgical sinus irrigation at 7 years (we discovered he was harboring bacteria in his tonsils), and THEN he was able to come off high dose ABX for the first time in his life without the sinus problems coming back immediately. PANS neuropsych symptoms started around 18 months and re occured whenever he cam off high dose ABX until tonsils were removed. After tonsillectomy he continued to have chronic sinusitis (inflammation / discomfort), but only needed ABX 1-2 times per year. PANS symptoms were at a low level of ADHD, with mild OCD and occasional tics, but he was able to function in school, sports, and activities. PANS symptom flares with ANY illness. At age 12 his PANS symptoms (especially ADHD symptoms) began ramping up. This continued through age 13 with local docs saying it was depression. We finally consulted with Dr. T and went to Dr. B at age 14 and Dr. B found a huge mucocele (cyst) in DS ethmoid sinus. It had been there for 1-2 years and had eroded the bone between his sinus and eye. No one else thought to look because DS had a life-long history of sinus discomfort and the headaches were attributed to depression. Dr. B did major work up and we found he had CVID and few S.Pneumonaie antibodies. Cyst was removed - but next Fall sinusitis returned along with PANS symptoms. We Finally started IVIG 1 1/2 years ago and we follow the CVID schedule and do it every 6 weeks. It was a major decision to go the IVIG route, but we had no choice. DS had major PANDAS exacerbation following first IVIG, and recovered slowly. DS has not had a sinus infection nor any sinus irritation lasting more than 3 days since we started IVIG. He is on ABX and that seems to hold him. PANS symptoms are absolutely the lowest they have been ever. We see a mild return as it gets close to IVIG time, but it is manageable and he can wait it out until IVIG. His brain is not being assaulted on a regular basis. He is starting to take control of his life. Sorry for the long post - it is a long story. I feel for all the Moms out there with kids with chronic sinusitis. It seems like such a simple thing, but it is SO debilitating!

This article has been around for several years and it seems that they've updated it in June of this year... but if it is so current why is the Swedo PANS paper NOT cited here? (http://www.ocfoundation.org/uploadedfiles/MainContent/About_OCD/PANDAS%20to%20PANS%20-%20Final%20form%20for%20Pediatrics%20%20Therapeutics%202012.pdf). To their credit, though, they also do not cite the CANS paper. Pichichero is from the Univ. of Rochester medical center - the center where Kurlan worked when conducting the longitudinal study that set PANDAS back about a decade. It seems that Pichichero is a bit more objective than Kurlan, but still tends to sit on the side of administering very strict criteria to any definition of PANDAS.

My son had a very bad exacerbation after his first IVIG. However, he was 14 at the time and has had PANS and chronic infection since he was a toddler. I really cannot say for sure what helped, but we did do lots of charcoal to help with detox, lots of water with lemon. Some folks on the forum use bentoniet clay. You can search for either in this forum and get threads on how folks use it. Also we saw a lyme doc who changed his antibiotics so that they were abx that also treated lyme. He also did not test positive to lyme no matter how many ways we tested him, but we knew he had some type of underlying infection. Fatigue was an issue for him, however, so he is different from your child in that way. The lyme abx seemed to help (doxycyline and azithromycin). Best wishes.

I am so sorry you are going through this. Are you thinking that the stomach flu is going around your house (in addition to the ear infection issue)? My son has "small" flares - with small illnesses or exposure to other's illnesses. We can usually ride it out with a couple of days of ibuprofen to reduce inflammation until it passes. Regarding the yellow teeth with augmentin - my son had that when he "lived" on augmentin as a child, but it was really just a surface discoloration. It cleaned up when he went to the dentist and he did not have any long-term staining. I know tetracycline can cause long-term staining in developing teeth, that is why they usually avoid that in little kids.

Don't forget ibuprofen - if she is able to take it.

Don't forget to change the toothbrush, use paper towels instead of cloth towels in the bathroom, and paper cups if you need to next to the sink. I know others have some strep-reducing tips that they might add in. I am so sorry for you. I hate it when I feel like my house is a germ factory. We had the same problem with mycoplasma last year. It just did not want to leave!

Does your son have a history of chronic infection that trigger PANS exacerbations? If he has a strong history of infection then it is unlikely that he will stay healthy without IVIG and you may want to get going with IVIG. If he does not have a history of chronic infection, then you may want to hold off and keep him on antibiotics. If the Doc says he is going to need to come off augmentin by halloween - what will he put him on after that? If he is going to change meds, perhaps you could make the change this summer so that IF he flares with the change at least he is not in school at the time My DS15 is also CVID but has chronic sinusitis that we could not clear prior to IVIG. My DS DID have a huge flare with the first IVIG and I would not want anyone to go through that unnecessarily. However, since we started IVIG a year ago, he has had NO sinus infections and it has allowed his brain to take a break from PANDAS attacks - which is letting us clean up his OCD and behaviors a bit, since he had repeated exacerbations for many years. My son's Post IVIG flare came about at the end of 8th grade and continued until December of 9th grade. He has started to catch up in school since January, but it has really taken a toll on him educationally. I am glad that it was his Freshman year and not his sophomore or junior year. I am hoping he can pull it together next year and then may have a shot at the post-high school path that we know he is capable of. So - that is one more think you should consider as you make this decision. It is a huge decision and I feel for you. In the end, I agree with others that you need to follow your gut.

This is from the "pinned threads" at the top of the PANDAS page. I know I did not realize that my son's unusual behaviors were actually OCD until I read this and the pattern became clear. http://www.latitudes.org/forums/index.php?showtopic=6153