beeskneesmommy

We have a boy who is 4, turning 5 in Sept. I recently had a teleconference with Dr. K of Il., who told me that we would not risk our son's health any further by waiting, even for a couple of years. What he did say was that IVig starts to become less effective after around age 9-10. He advised that we wait until age 5. We are likely going to proceed, although we are going to try to exhaust other options. Good to hear that these little ones did OK with it. We find the whole idea and process very scary. On another not re: IVig, is anyone fearful of blood borne pathogens? I know they screen very well for HIV, but I have heard that there are multiple other, less detected blood borne diseases....???

Thank you for this info! My son (age 4) had his tonsils out finally last Aug., and has not had detected Strep of the throat since. However, his titers actually elevated after months of daily Augmentin, and I am absolutely sure that he recently had Strep although he is now on a BID dose of Cefdinir. He was exposed to Strep by another kiddo at preschool and got sick with a fever and sore throat afterward. We were on vacation and I was unable to get him in for a rapid test for a week, and the test was neg. However, I had not seen that particular brand of behavior since he had his tonsils intact and was getting Strep every few weeks. I also hear that there may be other resevoires that harbor Strep, such as the rectal area. Is there a non invasive way to culture this area (like, me doing it at home while cleaning him up after the potty or something)? Don't mean to get too detailed in my thinking process, just desperate to find the source of this Strep! Thank you so much for the info and any thoughts you all have would be very welcome!

Hi: I also live in NC, in the Triangle area. My 4 year old son has had a DX of PANDAS since he was 2.5, and we have been traveling to Children's Hosp. of Phila. every 8 weeks since last Sept., when he had an acute episode. Dr. Elia heads the Behavioral Health Sciences Center at CHOP is a well known and respected PANDAS specialist. Her expertise lies in PEX, rather than IVig. Both are acceptable off label treatments for PANDAS. Dr. Elia is appropriately conservative, but does not seem fearful of more aggressive treatments when necessary. We are considering IVig in the near future, as we are unable to have PEX due to my son being so small and not having a good "exit vein". IVig is our second choice and we would rather be under the care of Dr. Elia than anyone else during the process. Best wishes and positive thoughts your way!

Hi: I do not think that it is std. procedure to test removed tonsils for Strep. We requested this specifically, and afterward when we asked for results, the ENT said we had not requested Strep testing (!), and that it was not std., and too late.

My son was 1st DX with PANDAS at age 2.5, and after multiple Strep infections accompanied by PANDAS responses, we were advised to remove his tonsils/adenoids just before his 4th birthday. We were told by the ENT "No tonsils, no PANDAS". Ridiculous. His symptoms exacerbated severely, and 3 weeks after the surgery he had his 1st acute episode. It was major in that he developed completely out of control facial/vocal tics, chorea form movements, extreme intermittent regression and a "vacancy" (not other way to describe it), for several days. He was on Omnicef for 10 days post surgery, then I requested Augmentin but his ped would only give him a low dose of Amox. Upon the day of his acute episode, I took him to the ped so he could see for himself how sick my son was. He prescribed Augmentin in the therapeutic dose for typical treatment of Strep at my request. 5 days later we were at Childrens Hosp. of Phila., and it was my understanding that the Augmentin was instrumental. Unfortunately, although I requested that pathology test his tonsils for Strep, it did not happen. I believe that he was infected at the time, but I have also been told that the surgery and anesthesia/meds could have kicked off the acute episode. I strongly urge you to get your daughter on a daily prophylaxis of antibiotics ASAP. Best wishes and positive thoughts toward your kiddo!