melmix

I haven't has this particular issue but my son reacted badly to Xanax type meds. Clonidine relaxed him but made him very sleepy. I wonder if that might take the edge off. Good luck

Clonodine at the lowest dose works for my son.

Hi - My son has been prescribed Namenda for this (usually used in Alzheimer's patients). We have not started yet, as he just started school and we wanted to be able to differentiate from the new school behaviors (better or worse) and the start of a new med. The only reason I mention it is my son has paradoxical reactions to almost all other psych meds (he was on Namenda briefly before and either it was not long enough or it did not help but was not worse). He is significantly worse on Abilify, Seroquel and any benzodiazepene (the folks at Courtagen told me this was common in PANS). Melmix DS8 PANDAS/Lyme

One of the biggest things my son has an issue with is deciding. For example if my husband wants to take him to the movies, my daughter will say yes and he will say no,yes, no, yes and then will immediately want to go when they are gone. He also had a problem transitioning from room to room for classes - he seemed to not want to step over the threshold. He used to pack up his stuff a lot in bags. He used to want to keep all of his papers and even some boxes for toys that had pictures on it. Hope those help. Melmix DS8 PANDAS/Lyme

Did you get in touch with his office staff? Mary and Paul seem to help when I get a hold of them. Do you have any other info on triggers? We have been on a lot of different meds but my son has a ton of infections and one abx would not do anything for him. It was many abx, plus valtrex, plus supps, plus T&A removal. Melmix DS8 PANS/Lyme

My son has had this issue forever and we used to use Miralax but have not since the news on it possibly causing behavior issues in kids and not to be used long term. We finally (and he was going to have to get his stool removed by a pediatric surgeon) found a combo of 3 colace, 1 flaxseed, and one constipation stop (which has aloe) and he goes once a day. This is a lot for a kid, but was recommended by his pediatrician since the problem was so severe. Melmix DS 8 PANS/Lyme

Sounds like my DS, 8. He has gotten so much better but will have these moments. An ABA teacher taught me how to hold him so that he can not hurt me until he settles down. I think we are going to have to go back on antibiotics or antivirals as the final solution but until then we can only try and avoid the escalation or hold him. Melmix DS 8 PANDAS/PANS/Lyme

This is just my son's experience but it was horrible for us. We had him on almost everything at some point (this was pre PANDAS/Lyme diagnosis). His worst were Seroquel and Abilify. I will say thought that both his psychiatrist and therapist (who both work only in that field and do not have any pandas patients) had never seen that reaction before. They said both of those are much more likely to do nothing than to cause more problems. Just one of the reasons they finally started accepting he might have an infection related problem. Melrmix DS 8 PANDAS/PANS/Lyme

I would urge you to go to a specialist. Some of the things you are describing sound exactly like my son. He pulled out a good portion of the hair on his head in about a weeks time - we thought he was upset his grandmother was just diagnosed with pulmonary fibrosis and the whole family was upset. He was perfect at school and really bad at home for a long time and then he could not hold it together at school. He had major separation anxiety, speaks like a baby when he is flaring, and stopped going into the lunch room because it was now too loud. Not sure what strep test you had - there are actually 3 different blood strep tests besides the swab. Also my son had multiple other infections. Good luck to your family. Melmix DS8 PANDAS/PANS/Lyme

Just to add one thought - my son has a persistent cytomegalovirus (CMV) infection which is another virus I think is common in PANS. Melmix DS 8 PANDAS/PANS/Lyme

Yes. My son, 8 has made huge strides after tonsillectomy. That said, he would not take abx for days afterwards, got a 105-106 fever and had his worst behavior ever right after. As soon as we got him on abx he got better and better I would say over 2-3 months (there was an infection in his biopsied tonsils). We have been very good until recently when I noticed he was flaring a bit. We found out he has a blood histamine of 6 so it seems it is allergy related right now. Melmix

Therapy was not at all helpful until my son's symptoms got much better. Now he still struggles but is able to talk about some of the issues that are still lingering. Melrmix

Have you tried tonsillectomy? My son has strep, lyme, myco, HHV6, CMV, and PANDAS and our single best result was from having T&A which removed a bacteria from his tonsils that we did not even know about -- veilonella dispar. I have a feeling many of these kids have so many infections it is hard to tell what is causing the most problems. I was shocked at how much better he got after T&A -- and he still has high titers for all of the above and most likely bartonella. Melrmix

One other thing - strep can be positive with three different blood tests ASO, Dnase, and Streptozyme. Not sure if all were run but one can be elevated while the others are not. That said my son was positive for all 3 and also mycoplasma, lyme, anaplasma, HHV6, and CMV so there are many infections that could be causing it. Melrmix

I don't think my child has this problem, however when he had T&A he would not take any liquids or swallow any pills (ended up getting a massive infection and fever) but the one thing I found out is Cednifir tablets are easy to open and they had no taste in a juice. I tried a bunch and they all tasted horribly and he knew it was there except for this one. Now I do this all the time since I would rather my kids not get the dyes even if they are not especially allergic. Melmix DS 8 PANDAS/Lyme/Metabolic Disorder

I was there - at the parent portion - I got the impression a lot more technical information was discussed during the prior day with health professionals. It was very different from the other conference I attended in Norwalk - for example Dr Swedo claimed there was no reason for multiple IVIG treatments and another doctor stated in his opinion there is no affect on changing diet (ie gluten or casein). Any other specific questions I would be happy to answer. Melmix DS 8 PANDAS/PANS/Lyme

I think you need to get tested for PANDAS/PANS which is much more than strep titers. You could have mycoplasma or viruses causing the flares or you could have initially gotten PANDAS from strep and now are having flares from other things. You should get to a PANDAS specialist who can run all of the different tests. I am pretty sure Dr T sees adults. Melrmix DS 8 PANDAS/PANS/Lyme

Definitely sounds like PANDAS. Have you considered getting his tonsils out? My son also has a hard time with wiping. His solution is just to not wipe at all so he doesn't have to touch it and then throws his underwear in the back of his closet. Ugh. Melmix DS 8 PANDAS/PANS/Lyme

I have just realized my ds8 had his worst flare after cavity filling. A mouth bacteria was found in his tonsils when they were removed. Also I was just at the Providence PANDAS conference and they stated dental work can cause a flare so I would assume molars can too. Melmix DS8 PANDAS/PANS/Lyme

Hope this helps - My son has been on a lot of medications and just had his first allergic reaction. He had hives all over his body (I thought it was chickenpox at first not ever having experienced it). I'm sure his behavior was somewhat worse also but nothing out of the norm - the reaction was totally skin based. Another thing to note- it ended up being the Omnicef he is on (antibiotic) which he has been on for about 3 weeks - we had just started a new medicine and that was not the problem. I guess most antibiotics can cause an allergic reaction a while into taking them so even though everyone says "What have you changed lately" it could be something he has been on a while. My doctor knew right away. For me herxes have always been behavioral. Melmix DS8 PANDAS/PANS/Lyme

Just wanted to let you know my son has been diagnosed with PANDAS/PANS and his infections are: Cytomegalovirus, HHV6, Lyme, Strep, Mycoplasma, & Anaplasma. I think most likely he had the Lyme early and was then immunosuppressed and was not able to fight off other infections as easily. Seems like you have a very similar case. Hope you find good help with the doctor (our doctor definitely believes adults can have PANDAS/PANS). Melmix

Hi - I am not sure this is that helpful since we are 7 days post tonsillectomy and have no idea what the long term results are but will give you my experience. My son had one (know of) strep throat infection in his life. He was 4. He started pulling his hair out at the time but we did not know of PANDAS and went in another (non-helpful) direction. He has since had high levels of ASO, DNASE positive streptozyme (along with Lyme, Myco, etc etc). We were thinking Strep might not be the major trigger but my son was on probably 7 different (some concurrent) abx over the last 7 months and although his strep went down a little originally in December it started going up again. We decided to get his tonsils out. He has never had really red tonsils or inflammed or anything like that. I assume all of the strep is inside. Day of surgery he came out and had the best behavior we had ever seen. Only issue was he would not swallow pills (abx or painkiller) and wouldn't take the liquid or melt away tablets. Two days in he had the largest flare of his life - almost uncontrollable - so angry and hitting kicking and biting and could not look at anyone (or even have the blanket on top of him look at him). He had major OCD. We finally got a prescription for Omnicef and gave him that in a drink (no flavor unlike his other ones when I opened them). That night he had a fever of 105 - we took him to ER (they kept saying flu or virus). I knew it was strep. They did get a rectal Tylenol in him and fever came down and we took an rx for flu but didn't fill it. All flu and virus tests came back negative later on -- so it definitely was not a virus (he is not even in school so don't know where he would catch it). Since then he is getting slightly better on the Omnicef and we have been able to have him take a couple Azithromycin. So my take away for you is -- maybe find out the numbers on ASO and DNase (I have some doctors that told me his 800+ range was actually normal). Also my son really never had a sore throat, has mutliple other infections but the one thing I can say is something massive was released after his tonsillectomy so something was in there. I am glad I did it although the recovery pain and flare have been almost unbearable. I can't even be alone with him and my husband has no more days off - he has to request sick days to be donated to him. I can only hope that his horrible reaction means something came out that will make him better in the long run. Hope this helps. Melmix DS - 8 Lyme, PANDAS, PANS

While my son is getting better on antibiotics we have been given prescriptions for clonodine (a BP medicine) and Atarax (a histamine blocker). Clonodine just makes him tired but it helps on the days we are getting him through a flare. Atarax seems to have helped also although it is too soon to tell. He has actually been given Ativan and Xanax both which did nothing and he has a bad reaction to Benadryl and Claritin so we have settled with these two. Melmix

I called Mass General to make an appt (6 mos wait) and posted on one of my facebook groups about them. I was PMd by a couple of different individuals who told me not to go based on their experiences. I was already seeing Dr T and they said he is a much better resource and that when they opened they were more open minded to PANDAS but that pressure from the main hospital has caused them to diagnose psychiatric problems much more often. This is not my experience as I have never been there but wanted to let you know. Melmix

I know Dr Trifiletti in Ramsey tests those since he tested on my child - he had high VMA and HVA. My son had low copper and carnatine also. He was checking for a metabolic disorder. At the end of the day I am still not sure why my son had these numbers -- it seems as though all of his infections (including Lyme) could cause this or it could be a metabolic issue that we have yet to identify. He has taken DNA tests to check for some of the more well known inherited metabolic disorders.