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
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
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
I am so sorry for what you are going through. I live about 20 mins from Dr T so we see him. He used to have a different office staff where it was really hard to get a call back or to get a hold of him but he just switched a few weeks ago and it has gotten better. Since I live close I make a lot of appts. and I can usually get in within the week. He does work on Sat. and Sun. also. If I remember correctly he is at a conference (I think in DC) two days this week so he may be a bit more packed but you could call tomorrow and see. My husband works out of DC and we do this ride regularly - it is 4 hrs on a great day and up to 5 or over if you hit bad traffic or construction. Not sure if he is right for you but it is an option. Also I used to live in the town Dr B works in and that is just about another hour from here is you want to make that drive (never seen him and don't know about his response time). There is also a specialist at Yale which is just a bit further north than Darien where Dr B is.
Good luck.
Melmix
