P_Mom

Hi All, I am kinda new here, but, keeping it short, my almost 5 year old developed sudden onset vocal tics and OCD this past July. My older son, 7, then developed two mild motor tics suddenly this past summer too, both shortly after a strep infection. My older son has shown no other symptoms, and his tics only come out when under a lot of stress. My younger son is a different story. OCD/Anxiety/Tics/separation anxiety, etc. It was a terrible couple of weeks, I didn't eat, sleep, etc. and had no idea what the heck was happeneing to my kids, we were so scared. After much research, we finally found out about PANDAS, it fit to a T. Now we are looking for treatments. My son is almost symptom free now, still mild ocd/tics, soooooo much better than he was. We had blood work done for the titers, both negative, but this wasn't done until 3 months after symptoms, so, the fact that he is almost asymptomatic now, with normal titers makes sense and does not rule out PANDAS. What I want to know is why haven't I heard of anyone considering IVIG? This procedure can actually take care of the problem FOR GOOD! It works either way your system needs it, by modulating it. My research indicated a one-time treatment , given over a two day period, with only 1 year of preventative antibiotic, is likely to take care of the problem for good, even in the event of strep again. We are considering this for our son, to catch this early and prevent recurrences and future problems. There are many documented dramatic success stories with PANDAS kids and IVIG. I guess I don't understand why I don't see it mentioned anywhere in these posts, has anyone looked into it or considered it (besides PANDAS Denmark)? Please let me know your thoughts! Thanks..God Bless. kelly

Hi Chemar, Thanks for your help! How do you go about detoxifying from heavy metals? I am especially interested in checking for yeast overgrowth in my son, for I suspect it. Do I go to a doctor or allergist? How do I check for yeast and how do I treat it? Thanks again! Kelly Oh, I forgot, is is okay to give Taurine and Magnesium, two sep. supps. together, or should I get Mag. Taurate? Was your son's Crohn's related to his TS? Kelly

Hi Chemar, Thanks for your help! How do you go about detoxifying from heavy metals? I am especially interested in checking for yeast overgrowth in my son, for I suspect it. Do I go to a doctor or allergist? How do I check for yeast and how do I treat it? Thanks again! Kelly

Hi Chemar, I was wondering about your son, how his TS manifested? Just curious to have something to compare PANDAS onset and inherited TS onset. You said your husband and his father had TS. Were they offically diagnosed with this? Does your husband still have symptoms? Also, how did your son start to show symptoms and at what age? How old is he now and how is he doing? I know, a lot of questions, this is new to us and I feel overwhelmed? Thanks for your help! Kelly

Hi, I am kinda new here, first, can someone please tell me what a DAN doctor is? I would REALLY appreciate it! Thanks! Kelly

Hi PANDAS Denmark, DKRESmith here, wondering if you received my reply to you? Have you made any progress? Please let me know, I am wondering how you and your son are doing? What is your story with your son and how did you get the first dose of IVIG initially? Sincerely, DKRESmith

Hello Everyone. I am new to this post, I finally came across it today after months of research on PANDAS. My son,5, had sudden onset of vocal tics/ocd this past August and I was a mess for about a month over it, still kinda am. He and his brother, 7, had strep at the time and when I came across PANDAS, wow, that was him. He went on the typical antibiotic course, actually 2 courses, and during the second course is when it all exploded.?? During the ensuing 2 months, everything calmed down considerably, with just very minimal ocd and a minimal vocal clearing of the throat left today, no one would notice a thing. I don't know where to go from here. What is amazing is my older son suddenly develpoed 2 motor tics a couple of weeks after, and I am wondering if it could be the same thing. But, my older sons behavior did not change like my younger sons did VERY much so. My older son only tics when under stress and it is mild, he is going in for tonsillectomy this Thurs. for airway obstruction with his adenoids and they will just take out everything. I am curious to see if his mild tics go away as I have read tonsillectomy can significantly help PANDAS kids, if he is even one. But, back to my younger son, who I have no question has PANDAS. We are waiting test (blood) results right now, then what do I do? I am torn because I have read much about IVIG, and PEX, and know they have been proven to put these kids in complete and lasting remission. PEX removes antibodies, IVIG blocks. I have found a doc who has vast experience and success with IVIG and PANDAS, and he says a complete and lasting cure should and can be expected after IVIG is administered, even in the event of strep, the child should remain symptom free. To test effectiveness of IVIG, steriod burst is administered, which is an anti-inflamatory, immune suppresent, just what PANDAS needs, and if SIGNIFICANT improvement in your child symptoms is noticed, then IVIG can be considreed as the next step. So, I am wondering, should I put my child on preventative antibiotic, or just go for the IVIG and take care of it altogether? IVIG is considered invasive and carries some risks. I spoke with a MOM whose daughter had severe OCD/PANDAS, and after she had PEX, it was totally gone. Does anyone have any input or experience with IVIG? I was surprised to not find it mentioned anywhere in these posts. By the way, what is a DAN doctor? I appreciate advice form all you PANDAS parents, I am confused as to which step to take next. Thanks. Kelly