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Everything posted by BradsMom

  1. Our son was Dr L's first rituximab patient 3 years ago. It worked miracles - but it stopped working a year ago and we can't get him back, despite continued immune therapy. Re: insurance, it's not the company, it's how well FUNDED the plan is. We are blessed that my husband works for a fortune top 10 corporation who is self-funded and very generous. It was fully covered. Each treatment is in the neighborhood of $30,000. Don't get me started on that. Do you have a nurse case manager with Anthem? Call them to find out. if yes, she will be your best resource. God bless and best of luck
  2. Re- Lyme I know what you mean, my son had it when he was 4 (positive western blot and tell tale bullseye) so I was a bit annoyed that she wrote it off as "over diagnosing". But then I thought about it. Both my husband and older son had classic Lyme (fever, joint aches) but they bounced right back after antibiotics. But something about Bradley's response to it caused his brain to fry. Lyme, combined with the constant ear and strep infections, then mycoplasma pneumonia and allergies, turned his immune system into overdrive. So I began to believe it's not the actual bacteria, it's the body's mistaken response to it. That's basically where dr j is coming from. He's had 2 years of rituximab every 6 months, monthly Ivig, and cellcept daily. He's a new person. He's far from perfect but he's stable and most importantly, happy. Dr j has helped get him there, so I'm a big fan. That said, I totally agree, keep other doctors you like in the mix and follow your gut. Best of luck!
  3. We've been seeing her off and on for years - and very much "on" for the past 2. She collaborates with Duke to implement my sons immune therapy. She does have a heavy accent but you'll get used to it. Plus she takes excellent notes which are accessible via by the portal. You can get appointments relatively quickly and takes all insurance. I love her! We did the vaccine test and had no problem with it. She advocated with our insurance company and got everything covered. She's very smart and I would stick with whatever she recommends! Good luck
  4. Wow, I'm so glad there's someone else out there who, like me, is 100% certain that spring allergies cause horrific flares. Our DS18 started with pandas on 11/9/05 then progressed to pans even after strep addressed, now Dx autoimmune encephalitis. Every spring, literally the day I get an auto email from pollen.com that the count is detectable there's an instant change for the worse in him. This has been true every year and progressively worsened with each passing year. But as bad as this pollen year is, he's actually (God willing) improving and for once I have hope. We are now on Duke's protocol - rituximab treatment every 6 months with IVIG and cellcept in between. He's had IVIG every month since last dec (6 in total so far) and another rituximab infusion scheduled for June 2 and 18 (this will be his 3rd round), as his B cells are coming back. We've seen sudden mood swings on particularly bad pollen days but nowhere near the full-blown psychosis, violent behaviors, and neurological events of years past. I firmly believe IVIG is helping. Unfortunately I can't comment re: allergy shots as we've never tried them. What we're trying to do with rituximab + ivig is "retrain" his immune system to not react the incorrect way that it has for the past ten years. He has a long way to go, but I geniunely believe it's working. Good luck!
  5. My son has had phases of these uncontrollable fits of laughter for 8-1/2 years since that fateful day he came home from school psychotic. He's currently so sick he's undergoing rituximab therapy and has the same fits of laughter. It's not the IVIG it's definitely pandas. But unfortunately we've never found a treatment to manage those symptoms. If she is otherwise stable, I'd just wait for them to abate. One other thought, I know for a fact his are worst in the spring. Not sure where you are but if you go on pollen.com and check local pollen counts that could be a clue.
  6. thank you ALL so much! Ellen/powpow I have reached out to you separately but eamom - we saw Dr Bouboulis, a Lyme expert in CT last week as well. He put our son on doxy together with his current zithro and ordered specialized labs through Igenix. Trouble is, he is now refusing to take the doxy - he says it made him sicker. The last 24 hours have been beyond all words in terms of psychosis/violence. Then all of a sudden he just snapped out. Friends that have had lyme say that is to be expected with doxy - it gets worse before it gets better. Does anyone know if Rituximab wipes out the potential lyme and/or lyme co-infections' autoimmune response as well?
  7. Hi, I opened an account and posted the other day about my son, now 17, suffering for half his life with severe PANS. It started with countless ear infections as a baby/toddler, then 7 known cases of strep as a child, even lyme disease at age 4. On 11/9/05 at 3:30pm our entire world ended as we knew it. He came home from school hallucinating, paranoid, delusional. We tried every antipsychotic on the market, none helped and even made him worse. We even had in a study at NIH looking for childhood onset schizophrenia that first year - which they ruled out. It still KILLS me that Dr Rapoport and Dr Swedo are colleagues yet they don't collaborate on their research! If they had only tested for strep - his titers were off the charts, as we learned later in 2006. In 2007 he had 5 IVIG treatments. It took well over a year, and while his chorea/tics disappeared, the psychological never fully did. So I did everything I could think of to ensure he never again got strep, Prophylactic antibiotics, homeopathic remedies, natural remedies, diet/supplements to support his immune system, chiropractic kinesiology, I can go on and on. But he still had terrible exacerbations, especially every Spring! We no longer felt safe in our home, he was dangerous. So I gave up on PANDAS and believed the psychiatrists, loading him up on psych meds to the point that all he could do is drool. It was by divine intervention that I took FMLA when my husband got sick (and treated successfully) for cancer last year. Meanwhile I attended the NE PANDAS conference - Bradley was so sick he was committed to psych hospital for 35 days last fall. I made an appt with Dr Latimer - it took months to see her but given all the years of clinical data, combined with positive Cunningham panel and immune work up, she can see he is so far gone and ordered Rituximab infusions last thursday. She helped us win approval from our insurance company and we head down to Georgetown tomorrow to start (we live in NJ). In all my years of research, I never read about Rituximab for PANS. What exactly can we expect? Dr Latimer didn't go into detail but Dr Aziza Shad at Georgetown, who will do the infusion, will likely explain. From a parent perspective, can anyone else add? THANK YOU!!
  8. Hi I am a new member but not new to PANDAS. Our son is now 17, turned psychotic on 11/9/05, and has never been the same since. The most aggressive treatment he had was 5 IVIG infusions in 2007. It took more than a year but I estimate he improved by about 50%, only to regress every year, particularly in the Spring (allergy season). I started to second guess myself and listened to psychiatrists, drugging him up for 8 years and turning him into a walking zombie. None of the 30+ psych meds help. Not until the NE Pandas conference did I realize my gut was right all along - it really is autoimmune! He has become physically aggressive, anorexic, won't shower or bathe, has wild chorea/tics, and brain fog so thick he can't make a decision to save his life. We are desperate! Good news is, we go to Georgetown next week for Rituximab infusion. Is there a forum/resource for severe cases, like ours? He went from PANDAS to PANS to autoimmune encephalitis and looks like he is dying right in front of our eyes....
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