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Hi all my 6 year old son has been diagnosed, i think...with pandas/pans. an explosion of symptoms began early summer. we went on a family vacation and everything was a level 10 out of 10. He was licking everything, biting objects, looking at fingers lined up, asking questions multiple times, concerned about his eating area, defiant, hyperactive, very angry and moody, and extremely anxious about being alone. We called his ped multiple times while we were gone, and the nurse just tried to say you're on vacation, maybe he's just adjusting. we knew something was very wrong. we saw her again when we returned, and she noted how different he appeared during the visit--on the floor, in constant motion, talking non-stop, and repeating things. she suggested counseling, as we have had many serious family stressors in the last year. i started looking online at information on tourettes and came across the pandas/pans stuff. he fit nearly every criteria. i also noticed dilated pupils were a symptom, which I remember seeing for months but didn't think much of it. same with urinary incontinence. he had about 6 daytime and nighttime episodes in 5 weeks time. he was out of school, so didn't notice much with writing. just that when I tried to sit down with him to do some schoolwork they sent home with kids to do for the summer, he refused and/or had a tantrum about not wanting to do the exercises. i scheduled an appt with dr k, who would be unavailable for one month. every day was/has been a nightmare and waiting to do nothing felt awful. i scheduled a ph consult with dr t who said he is "textbook" pandas. his bloodwork came back, and even though antidnase b titers were considered high, he thought pneumococcus was the triggering agent. he is on augmentin and biaxin right now. we saw a dr locally who refused to diagnose him with pandas (he won't acknowledge pans) since his strep titers were normal with a second round of bloodwork. we see dr k tomorrow. as i think back to his last illness that he had, it was in march, over spring break. he was sick with fever for 6 days. other symptoms were a cough so bad it often made him gag/vomit, but it was nonproductive. dr thought it was viral. 2 weeks later I noticed differences in my son, and that's when i began emailing his teacher to ask if she'd noticed differences. i mainly noticed tics, like blinking and facial grimacing, and hyperactivity. she said she, too, noticed but didn't think it was too bothersome. when i picked him up from school, he was so angry, nearly every day, that i thought something had to be happening in school. again, the teacher confirmed nothing was happening, he seemed ok, although she could no longer put him with certain students to do work like she used to, and that he had troubles following directions, standing in line, and staying on the carpet during reading. this is from a teacher who, up to this point, said she wished she had 18 children like him in her class! my son even said he felt like something was "wrong" with him. then I recalled a class field trip at the end of May I went on with him, and came home and told my husband that something was not right. he was very obsessed over the school bus and couldn't participate in learning activities. i began looking up adhd things. but as i said before, it's as if he could qualify for 5-6 dsm-iv diagnoses in one month's time! i've read some things here and feel very scared. it seems like something that never ends, or even gets better. i'm sure we'll be up against a decision on whether to try ivig or not. i've made an appt with a homeopath to begin treating, but i'm so scared to abandon traditional medical treatments. did i mention i have a healthcare background and am a scientist?? i really want to get at the core issue of the problem. i know everyone on here wants that too for their children. i'm just unsure how to go about it. i've never seen him so debilitated and i'm worried the next episode will keep him out of school. in fact i'm not sure how he'll fare with this upcoming school year, as he is now. he's on day 8 of abx, dr t prescribed 10 days. i'm wondering about recovery, what that looks like. his mood seemed significantly better to me two days ago. yesterday was a "good" day too. he didn't get angry as much or as intensely. but today i had a doctor's appointment and he was haywire--screaming "uuuhhh!" because i asked him to sit down, squeezing me out of anger (while I'm holding my 9-mo old), unable to be still, talking nonstop to the provider who was trying to talk to me, grabbing exam gloves by the handful out of the box, licking objects, etc. I don't understand....I thought we were on the mend. Can anyone share what to expect with recovery? are there good days then bad days, or is it different? same with recovery after ivig? how many rounds do kids typically need? I've read with younger kids recovery might be quicker/easier...is this correct? and what if the offending trigger is viral, not bacterial? what is the course of action then? do kids get better? and from what i understand, bloodwork is neither confirmatory nor disproving, so why the emphasis on it? does it really offer much useful information? maybe i'm misunderstanding this whole beast... i have many questions but will post later. i'm glad to have found a place to put ideas and questions out there.
My 10 y/o has aspergers as well as anxiety, pandas and lyme. Our biomedical dr suggested we try homeopathy for the anxiety and so we have been giving him Anxietin and Synaptol twice a day. The dr said that even though our son doesn't have adhd (Synaptol), the two have been know to work better together in treating anxiety. Since we started using theses products 10 days I have noticed our son is a bit more emotional and irritable. Does anyone have experience with these remedies? Has anyone seen a negative reaction at first? Our dr said that an initial negative reaction may not be a bad thing...it may mean that he is just getting some of the bad energy out. I'm just not sure how long to continue using them if we aren't seeing a positive response. Thanks!
Hi to all parents who have children with PANDAS. I'm new here and I joined this forum to share the success we had in treating Pandas with homeopathic remedy. We first encountered this syndrome when my youngest daughter turned 5. It was such a sudden change that I had to do a lot of research and experimenting. We have tried a lot of medicines from antibiotic to herbal supplements. There was a time my daughter was taking abt 6 to 8 supplements a day just so we can cure this horrible illness. This went on for abt 5 months then I found an interesting article abt homeopathy and made an appt to an homeopathic doctor the next day. She started treatment consisting of Ignatia, traumeel and spongia. A few days later, we saw remarkable results. My daughter was less hyperactive and more attentive. The Ocd completely stopped. However, there were still some goofy and jumpy moments. We tried these remedies for abt 3 months and her doctor tried anothe remedy which are carcinosin and echinacea. This I must say were much better than Ignatia. She is more behaved and attentive. Goofy movements were a lot less. We are on this remedy for a month now and I must say we are truly on the road to recovery.