jjl

Thank you Susan and Dawn. We live in Maryland and I am hearing that Dr Beals is good. I will try to get an appt with him. One question I have is that if you treat Lyme, since they use so many different abx, are you essentially treating PANDAS anyway??? John L

All, Just a newbie here asking for some help. I have been on the PANDAS board also because I am trying to determine whether our 10 yr old son has PANDAS issues or Lyme issues. Our son has moderate to severe autism. The symptoms seem very similar to both PANDAS and Lyme Disease. Over the last few years, he has had a few exacerbations of: frequent urination, ocd, spitting, agitation, hard time going to sleep, ODD. It got real bad in Fall 2008 and none of the treatments for suspected illnesses (allergies, acid reflux, GI inflammation, etc.) worked. We had to get him scoped since his spitting was so bad. The GI doc found swelling in his arytenoids (airway valves). We still can't explain that, but prednisone and flonase (oral spray) knocked it down. Spitting went away, but symptoms flared a few months later and another round of prednisone barely helped. The symptoms came back in Fall 09 and he was out of school all year. Then things got a little better and he started school this year and he just got antoher big exacerbation a few weeks ago (all symptoms above and all worse this time). He is out of school once again. The strep tests that we took recently are all negative (throat culture as well as ASO and DNASE). And they were negative in yrs past also when we checked. But, since they can be negative with PANDAS, we are currently on Zithromax until we see a PANDAS doc in late Dec. Some of the folks on the PANDAS board have talked about LD. So, I dug out our IGeneX Lyme Panel from 2008. At the time, we were told by our docs that he did not have lyme and I can see why because most of the results were negative and the one positive result was next to a negative result from different group, so that was contradictory. So, we forgot about LD. But, now with everyone being smarter in these areas, I thought I would post the 2008 results below. - IFA titers (B Burgdorferi G/M/A), 1:40 (Indeterminate) - Lyme IgM Western Blot (all bands negative) - Lyme IgG Western Blot -- CDC/NYS Western Blot (negative) -- IGeneX (showed positive since 2 **bands were positive). Band results: **31kDa IND, **39 kDa+, **41 kDa +++, 58 kDa + (all other bands negative) - Lyme Multiplex PCR (B Burgdorferi - serum & whole blood had same results) -- Genomic (negative) -- Plasmid (negative I appreciate your thoughts on the Lyme test results and your thoughts on what we should do. We live in Maryland. How do you proceed when you don't know which illness you are chasing. The autism complicates things because as you know there are more issues involved, like my son not being able to tell me what hurts. I should also say that we have another son that is 9 and he also has autism and likely has an infection of some type based on his symoptoms. Thanks for any advice, John L

Thanks for checking Vicki. I looked this up and it is not what our son has. It is odd though that he has symptoms that are typical to PANDAS such as frequent urination, ocd, and spitting, but the swelling of the arytenoids was a real surprise. The fact that the spitting has come back 2 years after it went away and the fact that it is present during the other symptoms of exacerbation, make it look a whole lot like PANDAS. Our primary concern is whether or not he may have swelling in his throat again. Like I said, it really makes me wonder if anyone else on here that sees spitting, may also have swelling in the throat, but just are not aware of it. I guess if abx eliminate the spitting, then it may not matter, but it also might be a clue to something. JJL

Amen! My earlier post on this thread was about how I hate the label (or diagnosis as some say) of autism. It reads as a purely psycological diagnosis. This label points to nothing medical. If more docs and parents would follow what you say about what is causing the symptoms, then people would find underlying causes. For expl, our older son has many symptoms that indicate autism, but they overlap with PANDAS like many. PANDAS is easier to address purely from the standpoint that the name implies a place to address, the immune system. I always try to ask the question why for every symptom and if you follow the trail long enough, you will get to things like the immune system or mito or metals, etc. Two years ago when our son's exacerbations started and the strep tests were negative, I was told by many it could not be PANDAS, so we wasted two years of on and off exacerbations. And of course we treated for numerous things to relieve symptoms, none of which worked. The main reason I love this forum is that people cared enough to ask the right questions and put out the truth. And now many children with autism will have a chance to address a core issue. JJL

Vicki, Yes, more than one doctor weighed in on the spitting, especially after the scoping (Mar 09) showed the arytenoid swelling. The swelling went down after a month of prednisone and topical steroid. The consensus seemed to point to an allergic reaction, but that was never pinned down and now it is back 2 yrs later. So, unless it is an outdoor allergy that skipped one season (spitting started Fall 08), I don't see it being an allergy. My personal theory (not a doc) since nothing else has panned out, is that it could be spitting (and maybe swelling again) related to his recent exacerbation. In 08/09, we looked at and treated for GERD, allergies, inflammation, and a few other things. Only steroids help get rid of the spitting whech says the swelling went down. So, I am wondering if a PANDAS type exacerbation could trigger an immune response in his throat and cause the spitting symptoms. It is possible that the swelling was not related to the spitting, but it is also possible that the swelling and spitting are related. It makes me wonder if all the spitting reported with PANDAS is simply ocd or if there is more to it. As far as the bicep rash, it is chicken skin looking rash and nothing has helped it. It is not red or swollen, just a light bumpy rash. I will make sure to point it out to Dr L. As far as thew supps and foods for that matter, we scrubbed every ingredient over several months and nothing came up. If it were food though, I would think he would have had constant spitting over the last two years and it was gone from Summer 2009 until just now. That is what makes me think of PANDAS. The spitting in the Fall of 08 was tied to an exacerbation and the spitting just restarted with an exacerbation now. The question that I am really thinking hard about is can PANDAS cause an immune response in one particular are of the body like the throat which can then cause symptoms like spitting. This may seem rare, but I doubt there are very many PANDAS folsk that just happen to have a scoping during an exacerbation to see what may be swollen. The other interesting point is that our son had been on Colazal, anti-inflammatory, for years from his first scoping in 03 (LNH) and the 09 scoping showed much improvement in all areas, but the doctor was very surprised by the arytenoid swelling. It's a real puzzle. John L John L I think it is possible that tics can be triggered by a local irritant, like inflammation. Yes, I believe that can be possible, but I am stuck pondering about the "cause" of the inflammation in the throat, specifically the arytenoids or airway valves. Something caused the swelling before or during the exacerbation 2 yrs ago and at least the spitting is back now, 2 yrs later. I wonder if a PANDAS onset triggered by some virus can cause inflammation in a very localized area? Here's a crazy thought, what if a subset of the PANDAS kids actually do have inflammation in the throat and that is causing the spitting during an exacerbation? I know it appears true for our older son and I would not call it a tic or ocd, but rather his response to swelling in his throat. This is very unique because we just happen to get the scoping that showed marked inflammation. I hope to hear Dr L's opinion on this unique situation. Thank you for the response. John L

Great question. Our two sons were dx with autism at 2.5 yrs. The symptoms do overlap and it makes you wonder. I hate the term autism because it is not a treatable term unless you believe the psychiatrists. If you believe symptoms are similar, then the term PANDAS is easier to understand because it gives you an illness to focus on instead of a generic term. Our boys have also done well on abx and of course over the yrs noone has ever been able to explain the symptoms other than the standard "that's just autism". And we have never seen any treatments (autism or otherwise) that were successful at addressing these symptoms. GERD for spitting...NOT, over active bladder meds for frequent urination...NOT, possible seizures, chiari, high testosterone, etc. to explain these symptoms...NOT. So, now here we all are on this forum, with very similar symptoms, and amazingly there are kids without autism that are getting better with PANDAS treatments. Is it possible that our kids with autism will get better with PANDAS treatments? What will happen with all the labels. I guess time will tell. Sorry for the rant, but it is bitter sweet to think an illness like PANDAS that has a label tied to a medical problem could resolve what many people in the autism community call symptoms of autism. We are fortunate that this forum is here and I would love to find out how all the autism kids are doing on PANDAS treatments. John L

Vicki, Yes, more than one doctor weighed in on the spitting, especially after the scoping (Mar 09) showed the arytenoid swelling. The swelling went down after a month of prednisone and topical steroid. The consensus seemed to point to an allergic reaction, but that was never pinned down and now it is back 2 yrs later. So, unless it is an outdoor allergy that skipped one season (spitting started Fall 08), I don't see it being an allergy. My personal theory (not a doc) since nothing else has panned out, is that it could be spitting (and maybe swelling again) related to his recent exacerbation. In 08/09, we looked at and treated for GERD, allergies, inflammation, and a few other things. Only steroids help get rid of the spitting whech says the swelling went down. So, I am wondering if a PANDAS type exacerbation could trigger an immune response in his throat and cause the spitting symptoms. It is possible that the swelling was not related to the spitting, but it is also possible that the swelling and spitting are related. It makes me wonder if all the spitting reported with PANDAS is simply ocd or if there is more to it. As far as the bicep rash, it is chicken skin looking rash and nothing has helped it. It is not red or swollen, just a light bumpy rash. I will make sure to point it out to Dr L. As far as thew supps and foods for that matter, we scrubbed every ingredient over several months and nothing came up. If it were food though, I would think he would have had constant spitting over the last two years and it was gone from Summer 2009 until just now. That is what makes me think of PANDAS. The spitting in the Fall of 08 was tied to an exacerbation and the spitting just restarted with an exacerbation now. The question that I am really thinking hard about is can PANDAS cause an immune response in one particular are of the body like the throat which can then cause symptoms like spitting. This may seem rare, but I doubt there are very many PANDAS folsk that just happen to have a scoping during an exacerbation to see what may be swollen. The other interesting point is that our son had been on Colazal, anti-inflammatory, for years from his first scoping in 03 (LNH) and the 09 scoping showed much improvement in all areas, but the doctor was very surprised by the arytenoid swelling. It's a real puzzle. John L John L

Mary, I should have been more clear. We do not live in Long Island, that is where our GI specialist is. We live in Southern Maryland. Having said that, we did have a lyme panel done a year ago and it was negative. Are you aware of a listing of lyme specialists anywhere? I understand it is very tricky to treat. John L

Thank you to everyone who said to try higher dose Zithromax. I thought I read somewhere that an avg dose is 10 mg/kg so our son should be on at least 320 mg 9not the 200mg he is on now), but we could always try 500mg for a short while to see how it goes. One extra question I have. Normally when we treat bacteria we also use antifungals to keep yeast at bay. After one week on Zith, we are starting to see yeast symptoms. Do you all normally treat with antifungals while on abx? John L

We will show the scoping results to Dr L. It is really amazing since all we saw was a bunch of spitting (which many PANDAS parents report) and what the doc found was real swelling in the arytenoids. We thought the spitting was ocd...boy were we wrong! Luckily, we called his GI doc and he recommended a scoping. Maybe it is related to his suspected PANDAS somehow or maybe it was some type of allergic reaction. Of course, two yrs later and his spitting has come back. The doc has him on oral steroid spray and this time he is also on Zithromax in case it is strep. If the spitting does not get better, we have a big problem to address beyond PANDAS. As far as testing, we have only done the ASO/DNASE/Throat culture, all of which were negative as they were the previous couple yrs, which is why we never pursued PANDAS before. We'll probably wait until we see Dr. L for testing since noone else we know would prescribe that test. Thank you for your reply, John L

I know you said you are still waiting for a miracle, but did the 2 IVIGs help at all? Just curious as I am brand new to this game and I thought IVIG was helping with symptoms? John L

Hello all. I am new to this forum and I wanted to tell you our story. But, first, thank you to whoever put the forum together. I think it is helping a whole lot of families that have nowhere else to turn. We have two sons with autism, one 9 and one 10.5. Our older 10.5 yr old son is more affected than our 9 yr old. Our older son is minimally verbal, I would say moderate to severe asd. But the last few years have been very very difficult. In late 2008 he developed frequent urination, spitting, throat clearing, agitation that got worse into Winter 09. We got him scoped since the spitting was so so bad. However, we were very surprised with the scoping results because what we thought might be just ocd spitting turned out to be a large area of swelling in his arytenoids (the airway valves). The doctor in Long Island has scoped well over 1000 kids with asd and had never seen swelling in this area. He consulted with a specialist and they thought it was allergy-related, but we never tracked it down. So, in Mar 09, he got a month of prednisone, flonase steroid throat spray, and prevacid in case it was acid reflux and our son got a little better. He was spitting so much he was wearing a bib at the time. Funny thing is that even if it was ocd which I read parents believe spitting is, he definitely had swelling in that area. Anyhow, he got worse after stopping prednisone (although he threw up on it 5 times while on it). He got another round of prednisone in July 09 which helped minimally and then he got worse. We went on to try several other types of treatments for allergies acid reflux, and you name it but nothing reduced his symptoms. He missed school almost all of 2009 and just after starting this Sept 2010 he got worse again and they moved him to a low functioning school due to the dozens of potty trips and irritation. Then he got really bad a few weeks ago and we had to pull him out of school. Over the last few yrs, we have looked at numerous illnesses that COULD cause many of these symptoms and there were a couple including PANDAS that could account for all of them. The other illnesses never panned out and when we looked at PANDAS a few yrs ago, we were told he did not have it because his throat culture and ASO/DNASE were negative on 2 occasions (three if you count the most recent testing this month). I was talking to a friend that brought PANDAS back up and I looked into it again. But of course now there are good web sites and forums (like this one) and the key is that I found out half the tests can indeed show as negative and a child can still have PANDAS. Also, when I read all the cases it was amazing to see the same set of symptoms that we have seen off and on for the last 2 to 3 yrs. So, we made an appt with Dr Latimer (we live in Maryland), but it is not until late Dec. Since our son has it so rough now, I tried to get our pediatrician to prescribe abx but she did not really want to. But, luckily, our DAN doc came thru and prescribed a 3 month supply of Zithromax. Our son has been on it about a week and we have not noticed any change in symptoms. We think he may be getting high yeast now due to the bacteria dieoff from the Zith, so we started Ampho-B today. I am not sure we are on the right Zith dose though. I keep reading about high dose abx, but I have not seen what high dose means for Zith. I did see a ref to 10 mg/kg for Zith. That would be 320 mg for our son but our DAN doc went with 200 mg. I hope that is enough. I hear it may take a few weeks or even months to see improvement. And of course, I am reading that he won’t improve unless the issue is strep which I am not sure he has. If it is a tic illness or a virus, that is a different ballgame. I guess Dr Latimore will help guide us with all this. I am also guessing that the reason he only did a little better on prednisone is because we never tried to kill any strep because it was never considered. So, whatever is causing the issues are still present and when I listened to Dr Latimore’s audio session, she said 1) Get rid of the source of infection in the child and family and 2) treat immune issues. Hopefully, the Zith helps with 1). We need to get my wife, younger son, and I tested also though. Even though the appt with Dr Latimore is not until late Dec, we should be able to tell her how he did on 2 months of Zith. If he did not do well by then, she may want to go straight to IVIG, but I am sure she will run tests first. Our younger 9 yr old son is moderate asd, moderately verbal with Q&A but not fully conversational. He reads and writes, but he is still in an asd class because of his poster child ADHD. He also has PANDAS symptoms, but they are different. He actually has some daily choreiform movements, ocd, hypotonia, pupils sometimes get big. So, we want to treat him also and we made an appt for him in Jan. Bottom line is that we feel strongly that our older son’s last few yrs of big problems are PANDAS, which explains so so much. I am so happy to see so many kids make progress treating PANDAS as that gives a lot of hope. I hope you don’t mind the novel but we have been in a 2 yr spiral and getting worse. Is there anything we should do that I did not mention. Does anyone have any thoughts about the swollen arytenoids? I should also mention that our son has always had a light rash on his right bicep. Hew has never shown any signs of strep other than several stool tests that showed a 4+ out of 4 for gamma strep but the docs always discounted that. Not sure if that means anything. Any feedback is appreciated. John L