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If the Cunningham test consists of 5 assays, four of which screen for specified anti neuronal responses, is it possible to have a general screening ANA test report as negative and still have a "highly likely" via Cunningham? I know there are 100s of autoantibodies not necessarily anti nuclear but am having trouble understanding the Cunningham tests - well immunology in general. This is just posted out of curiosity.

Quannie, I agree with you. My issue with reading "PANDAS was incorrectly diagnosed," is that it opens the door to those who do not believe in the disorder. The article should have elaborated on that point and indeed it should have noted that the umbrella is wide. That parent is blaming the PANDAS antibiotics (treatment) on the symptoms. Back to chicken and egg. Chances are the immune system was not correctly functioning to begin with, and therefore allowed the gut to get so out of whack in the first place.

True. The gut is the second (or is that first?) brain. I don't like reading about the misdiagnosis of PANDAS though - even when true-- it's slightly unsettling.

I can't give you any tips as it seems I'm in the same place. Your story will help many though; to reaffirm that we all go through these emotions at one time or another. My story is a long one as we've been managing this PANDAS (morphed to PANS) for a long time. We were flare free for well over a year until this past September when things came barreling back. It's a brutal phenomenon. Having some really good stretches almost makes it more painful when the symptoms return. So we live our own lives in a constant state of anxiety. I know the pain. I find myself losing my own ability to cope sometimes. I feel literally wounded all over again with each flare. I do know that over time, when you start to have more good days than bad, our own memories have a way of erasing the pain. During our "remission," I had almost forgotten how severe the episodes were. It happens slowly. You let your guard down a little. You find yourself watching a tv show! You may read a book that has nothing to do with health or the brain. It is a good feeling and you will get there. It just takes time. I think the best advice someone here gave me was to journal. It does help keep perspective and it helps us know that this life is a journey. With children in general - once you think you have them figured out -- it changes all over. This is true even with my non PANS son. I can manage things, and do my best but ultimately I can't control. But we'll be okay no matter what. Tonight we are coming off a pretty big flare. DS said his "brain was back." He's so excited. I'm so thrilled. But yet, here I am on this board. I want to keep him that way. I want a manual. Sadly, we'll have to create our own. I know exactly what you are going through.

DS12 eats his friends foods at school, every day. We are not GF but I go to great lengths to ensure a somewhat healthy balanced lunch meal. It's maddening to see that meal come home. So now, with my desire to try GF I wonder how in the world i can convince him to stop eating junk at school. I'm amazed at the array of junk available to him. I suppose with age, he will one day realize it's up to him. In the meantime it's so completely frustrating that he wants to undo all the potential good.

Thank you to everyone. I learn so much from each of you, every day. Am so thankful for this community!

Following this thread as I'd love to hear the answers to this question!

Curious regarding the PANDAS/PANS (Dr. T, Dr. B, Dr. L, Dr. K, Dr. Murphy, NIH...) experts and their feelings about Lyme/ co-infection involvement. Assuming most will screen, but since tests prove not reliable and since it's a clinical diagnosis - what do they say? Certainly linked, as theory for infectious insult to trigger rogue/dysfunctional antibody response in a susceptible/compromised immune system exist for both. But a divergent treatment path considering IVIG and steroids may not benefit the Lyme patient. What is the current treatment pathway then? Is there a branching point at which they say head down the lyme path vs. head down the more traditional (for lack of a better word) PANS path (assuming no clear trigger like strep or myco is identified and/or titers are stable).

Wow agnes26! Hope you get into see an AE specialist soon.

So has anyone done the clock test? DS (almost13), in the midst of a flare this week, drew spokes all over the clock face and numbers on the outside of his "circle." His numbers were unevenly spaced on the right hand side. He also was incorrect when asked to draw "ten after eleven." He's in seventh grade honors classes...

Well said!

I do believe this experience makes our children highly sensitive and compassionate toward others. What a gift it is and I'm so encouraged that your son continues to thrive. So much so, that he can now help others. Amazing! Incredible that he now describes his experience as " brain on fire." Given all the discussion just yesterday on this board about AE, truly amazing. Who needs medical mumbo jumbo. When a child says his brain is on fire.... we've got our answer. Hoping your friend finds healing soon.

Along with identifiable antibodies (though fully aware there are 100s more that are not yet identifiable), do patients with AE additionally have a positive ANA? They mentioned anti-tpo as associated but I didn't hear ANA? maybe I missed it. Just reading and learning here... DS had identified anti-adrenal antibodies noted on last bloodwork but no one yet seems to know what that means... Many thanks to all who have responded here. Your stories are very helpful. Wishing everyone a successful journey, regardless of the diagnostic name :-)

Very interesting. How do providers/researchers of AE "feel" about PANDAS/PANS. Do they acknowledge the similarities in theory, symptomatology and treatment? As I know many of us have said time and time again, PANDAS/PANS is merely the tip of some iceberg or a small part of some huge umbrella. Underlying immune system dysfunction/ susceptibility seems to be at the heart of so many neuro-psychiatric theories. Differences with triggers perhaps - infectious agents (i.e. bacteria, virus, parasite....), and offending antibodies but the process of "some rogue antibodies attacking the brain" is exactly the same.

Well the video certainly brought tears to my eyes. Many thanks for sharing it with me. We do live near Duke. Do patients flare? That is the one major difference I note.

No question that AE and PANDAS/PANS are related. Am glad to see more research in this area. Curious if anyone with PANDAS/PANS dx ended up with AE diagnosis and if so what were the criteria. Blood markers? Were they able to see changes on MRI? Do AE sufferers flare?

Thanks sfmom, you are so helpful! The odor is a very strong pungent (have to cover my own nose) smell. It has a semi-sweet quality but not in a good way. Hard to describe. He doesn't have it all the time - again I only notice it once a month prior to the onset of these other strange symptoms. I didn't think much of it until I looked in our journal. When I've smelled it, i have thought "yeast?" We've known yeast to be a problem in general for him. He's been prone to anal itching (and has had confirmed anal strep twice and fungal issues twice). He has itchy scalp pretty much always and a chronic itchy red spot under one arm. This is all why I was thinking fungal for his nose too and why I planned to ask his ENT about that possibility for his nose issues. His ENT continues to put him off and on different antibiotics (also why yeast is a problem despite probiotic). He does seem to respond well for a while, but it's certainly not eradicating anything. Because of all above, and the flushed red cheeks and the sense that something was about to tip for him, we did give him a dose of Diflucan. He got a severe stomach ache. The next day he was fully tipped into the intrusive thoughts, anxiety and OCD flare. The flare that I felt was going to happen anyway. Coincidentally or not, it's just one month after the last time we had the OCD flare... And his nose still looks awful. And then the headache...eye pain... So lyme perhaps, yeast yes somewhere in there, autoimmune system taxed definitely... Just really hard to tweeze it all apart and tell what is what. Our current providers are not willing to pursue BLO/further lyme testing. I guess I have to wait until LLMD appt.

Thanks to all! Quannie DS also gets headache and eye pain. But he also has chronic sinus infections and swollen nasal turbinates. We think this is all part of the puzzle but its hard to know what to do next. Thanks sf_mom. I appreciate the information. He was tested for confections which were all negative. There does seem to be a cycle though. We've never before seen this in all his years of dealing with PANDAS -- it was more classic then. Now there does seem to be a 4 week cycle. But he is also getting a sinus infection every month as well. Perhaps it's all related. We are on a long waiting list to see an LLMD. There are not many providers in our area. This question is a weird one. I feel like I am crazy noticing these things but there also seems to be a REALLY STRONG BODY ODOR a few days prior to onset of PANDAS type symptoms (brain fog, intrusive racing thoughts, OCD) (he also gets headache and eye pain but as said he is getting these sinus infections once a month as well).

MMC - I have tried to PM you but it says you can't get messages? Could you PM me? We are in NC also, Raleigh area and I'd like to talk to you about providers et cetera?

Thanks Quannie. Yes, DS by nature is hot! And by nature he is prone to a normal level of anxiety and his cheeks will definitely flush. This however is different. He can just be sitting around and get bright fiery red hot cheeks. These hot cheeks precede (by as much as 48 hours) the behavioral OCD flare which for him now is a ridiculous level of anxiety, rumination, confessional and reassurance seeking, worry about world peace and the joblessness rate... He's 12! When he was younger he was more classic PANDAS. Just right OCD was our main trouble with motoric hyperactivity. Flares about twice a year with strep or virus. I never noticed the cheeks though he certainly did get red ears from time to time.

Joybop, what I didn't mention is that we too changed school after that first grade experience. We went toa very small and very new private school. The curriculum and teaching style was to be very structured, very teacher led. I initially worried about what might happen if DS fell off the cliff again but we found that the smaller structured environment helped greatly. DS was able to establish himself academically in this setting and he was placed in signif. higher level classes. He did very well. I think even when he's not in a flare he is more sensitive to his surroundings. So minimizing all the hub bub of a big crazy school really helped in a general sense. I was able to develop one on one personal relationships with the staff. So when DS did flare, they could see the change and not beat him down. They knew his baseline. They knew a flare. That being said, we worked to still hold him accountable and I learned that he could hold it together even though he was compromised. DS would require warnings but was able to redirect in this school setting. We typically had a major flare in Dec/Jan and then another in the spring. Thank you for the bipolar link. In my opinion most mental illness, especially those types that cycle or start dramatically (schizophrenia) have roots in autoimmune insult. I do know that most traditional drugs have a paradoxical reaction for us. Zoloft, prozac-- really made him hyperactive and even suicidal. The only things that have ever helped are anti-inflammatory approaches like tumeric, NSAIDS, and antibiotics (azith, augmentin and suprax). So we press on. I will say though that one thing I wish I had done when DS was your age, was to get plugged in with an understanding and gifted pediatric therapist. I wish we had been able to establish that relationship early on. Because even if the OCD/anxiety switched on and off due to autoimmune issues - he still needed to learn how to deal with these issues. I read and read and read and we did a bit of therapy here and there but nothing could help because he was not able to grasp concepts of therapy when in the grips of a flare. We were never able to find that person that could offer therapeutic support. And in between flares, we didn't really want to talk about it. I pulled wool over my eyes and in retrospect that was a mistake. Because as an adolescent it's much much harder to convince them to talk to someone -- when this syndrome (or whatever this is!!) comes barreling back.

sf_mom, thank you so much! I have suspected fungal issues actually and planned to talk to ENT about this. Have not heard of the anti fungal nasal spray. DS has been sick every month since September! Please tell me more about viruses. DS had titers for Coxsackie A and B. IGM for A were negative. Titers were high for IgG but I thought that just indicated prior infection. IgM for CoxsackieB was for whatever reason not checked. He's had parvo- hence the thyroiditis. IgM was negative this time, IgG was 6.1 (high). I don't know enough about chronic parvo but DS does have intermittent joint pain. Does the IgM show positive if its chronic? HHV-6 IgG was 8.24 (high) but IgM was negative. What type of MD would manage use the titers to guide treatment?

DS has intermittent flushing, hot red cheeks that seem to precede an OCD flare. In 2011 he had one band 23 IgM (lyme specific) and one band 41 IgG via Western Blot. In 2013 no bands identified. We will still pursue lyme but... hypothetically help me think of other causes. He is an adolescent. Hormonal? He is hypothyroid but well controlled. After a very bad battle with parvo he had thyroiditis. He has chronic sinus infections (on antibiotics) and allergy to dust mites. All other allergy testing was negative. Any ideas? Have you heard of an auto -immune flush? His ANA was negative and though Dr. T found anti-adrenal antibodies (not high but right outside reference range), DS's endocrinologist said "I would worry about that."

Interesting conversation here. My DS12 has been around this block a few times. OCD started at age 5. It was an on/off switch. At the time no one suspected PANDAS. He also would have periods of "SEVERE ADHD." I remember in first grade meeting with his teacher in the fall. She said so many wonderful comments about his attentiveness and how on task and bright he was.... Fast forward SEVERAL months (january I believe) and they called to tell me he was racing around the cafeteria and had eaten the bird seed meant for a science project. They said, although they are not supposed to, "he needs testing for ADHD now!." Yes, the "hyper" is so much more and it's very on and off. After several months I met with the teacher again and she thought I had put him on medication because he was so calm and focused. Nope, no meds. He had just switched off. We've been down the traditional path and down the PANDAS path. DS was symptom free for well over a year (meaning no dramatic flares)in sixth grade. Now in seventh grade, we are back in the thick of things times 5 months. We are starting over. I had not seen that hyperactive piece in a long while but it came back even at this age. DS is now either hyperactive (at school he doesn't get in too much trouble but his focus is reduced and his teachers say he is much more chatty and "fast" than his usual), mad or obsessionally pessimistic. To us he seems to cycle through these phases now rather than turn them off or on - which is why we began heavy duty journaling. It's perplexing but probably because DS is an adolescent on top of everything else. He has chronic sinus infections, severe allergies to dust mites. Looking into MTHFR and healing...He has a host of physical issues now too - flushing red cheeks and joint pain. He does have confirmed autoimmune issues. We are checking lyme... I will say that when he is hyperactive and just all around strange I see him running to the kitchen and eating every carb in sight. So yeast is definitely a consideration to look at. Quannie, not to highjack the thread but I find it interesting about your nephew as I've considered a bipolar type issue in my now adolescent son. He was classic PANDAS from age 7-10. On and off no question. But things look different now. Is it possible your nephew does indeed suffer from auto immune inflammation?

Yes, I am curious about this as well. For a while I thought fish oil increased DS touching/tapping compulsion which may or may not be a tic of some sort. Yet, I felt he benefited from the anti-inflammatory properties. He's been on again and off again because I've never quite found the right supplement. You think its the ALA (alpha linolenic acid) that causes this specifically? Have you been able to find a supplement without it?