NVAmom Posted February 15, 2015 Report Share Posted February 15, 2015 Hi there, I have a DS16 and DD 12. Both were doing great after a long road of treatments. (Augmentin 875 mg twice a day, several steroid courses, IVIG - which helped ds briefly but not dd and finally plasmapheresis 2011 brought the lasting (until Nov 2014) healing. Well...let me quantify that.... After the plasmapheresis we tried sending them back to public school when they started losing ground. We began homeschooling and have been doing GREAT until November when my son was exposed to strep at one of his co-op classes. PANDAS is back with a vengeance...food restrictions (he's always been slim and has lost 15 lbs since Nov) , severe OCD (won't leave room). I could go on with the symptoms but will save you the boredom.... Anyways, Our neurologists recommended A series of 4 Rituxan infusions (also called Rituximab) to eliminate his 'B' cells which are the cells that contain the antibodies that are causing PANDAS. Insurance denied the infusions so we borrowed the money and he finished his last infusion Jan21. My question is if anyone else has tried this treatment. How long until you saw improvements? Thanks! Link to comment Share on other sites More sharing options...
fuelforall Posted February 15, 2015 Report Share Posted February 15, 2015 Have you not seen improvements yet? There are several posts out there about Rituxan, ck them. Some success but I'm sure parent will weigh in. Did he have anti-lysogangliosides in his Cunningham? Are you using prophylactic antibiotics still? You mentioned augmentin..... Are they on any diets? I have a ds14 and I am tired of the nightmare, I am sure you are too! My condolences! Link to comment Share on other sites More sharing options...
T_Anna Posted February 16, 2015 Report Share Posted February 16, 2015 (edited) Please check the post "New Parents: Advice from the Trenches" you can reach out via PM to those moms and I'm sure they will respond. From what I've read, things can get worse before they get better. http://latitudes.org/forums/index.php?showtopic=23531&page=2#entry179328 We are also looking at Rituxan as an options T.Anna Edited February 16, 2015 by t_anna Link to comment Share on other sites More sharing options...
dasu Posted February 16, 2015 Report Share Posted February 16, 2015 I am curious why Rituximab is only prescribed after PEX. The patent expires this year, so it should be cheaper than PEX, no? For many parents, finances are a limiting factor. Link to comment Share on other sites More sharing options...
PowPow Posted February 16, 2015 Report Share Posted February 16, 2015 (edited) My daughter had rituximab april 2014 & dec 2014. our doctors told us it may take a few weeks to have an effect. It was hard for us to tell, she's also getting monthly IVIG and high-dose solumedrol She had her second round in December, she had begun to flare, and her B cells were beginning to repopulate. My daughter had two doses two weeks apart for each round. She will be 17 in less than a month . She had pex twice in 2011. it really helped her at the time, but did not last very long. She is also the older sibling of a child with pandas. That daughter is now 15, she had pex and IVIg in 2011. After a few years of antibiotics and intensive therapy at usf, that child is fine. We are also in northern va (I assume that is what nvamom stands for) Edited February 16, 2015 by powpow Link to comment Share on other sites More sharing options...
michelleb Posted August 22, 2015 Report Share Posted August 22, 2015 Did your daughter flare after treatment? That is what I am terrified of. I feel like while we re not better yet with meat health and depression symptoms, the rages and anger have subsided and I am terrified of gong back to hat with this treatment. Wondering if we should wait and see if increased SSRI and time from the May Plasmapheresis might work. Link to comment Share on other sites More sharing options...
PowPow Posted August 25, 2015 Report Share Posted August 25, 2015 Did your daughter flare after treatment? That is what I am terrified of. I feel like while we re not better yet with meat health and depression symptoms, the rages and anger have subsided and I am terrified of gong back to hat with this treatment. Wondering if we should wait and see if increased SSRI and time from the May Plasmapheresis might work.No flaring noted here. However, she was also given high dose solumedrol alongside the rituximab, and that always helps her, even alone. Link to comment Share on other sites More sharing options...
michelleb Posted August 25, 2015 Report Share Posted August 25, 2015 Thanks. Good to know. Unfortunately my son reacts VERY badly to steroids. The two times he has gotten them he has ended up in the emergency and psych ward because he becomes completely psychotic. I know that solumedrol is the normal protocol with the Rituximab but hoping we can avoid it this time. Link to comment Share on other sites More sharing options...
Marlene Posted June 27, 2017 Report Share Posted June 27, 2017 My son is 17 and has PANDAS. We are looking into Rituxan but he cannot leave the house and travel to DC where the infusion is to take place. We live in PA. We are trying to get a doctor in the Phila area to write the order for the Rituxan so that we can have it done by an infusion center at our home. Does anyone have experience with that or know of a PANDAS friendly doctor in the Phila area? Thanks! Link to comment Share on other sites More sharing options...
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