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