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Everything posted by NVAmom

  1. 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!
  2. Hi! I have not posted in a long time. I came across an article online about a family's struggle with PANDAS and it reminded me of this forum. In the early years (4 years ago) I checked this forum hourly. Hoping to find some nugget of information that would help us cope day to day and eventually bring healing. A short background. My son first began displaying symptoms around 2 years old. My dtr around 18 months olds. Ds was diagnosed when he was 12. Dd when she was 9. It was a very difficult time. No sleep, lots of intense, scary arguments, refusal to go to school, fear of germs, separation anxiety, opposition defiance, insomnia, OCD, withdrawal from friends, refusing to leave the house.....the list goes on and on. I honestly have blocked the worst of it from my mind and only remember it when my husband or mom says....'remember the time...' We have had to make MAJOR changes in our lives but it is so worth it now!!! My son is a happy teenager who actually will spend time with the family. My dtr is a happy preteen who lives to play with her friends. Our biggest problems now are typical sibling arguing....he called me a name....it's her turn to feed the dogs. A long way from not being able to leave either one unsupervised for fear they may hurt themsleves! Here is a quick run down of our healing: 1) We have seen Dr L and Dr B. Both were helpful but Dr L brought long term healing 2) antibiotics started as soon as diganosed...helpful but still a long way from normal life 3) IVIG; son had 2 infusions - improvement with first lasted about 4-6 weeks; 2nd infusion- no help 4) IVIG; dtr had 1 infusion actually seemed to make things worse 5) plasmapheresis - HUGE; LIFE CHANGING; within 4-6 weeks AMAZING changes!!! 6) out of school 6 weeks after plasmapheresis ...THIS was KEY!!! 7) dd went back to school around 6 weeks...in 4 days MAJOR regression...removed from school, steroids 8) son never returned to school. Both finished the year on home bound status 9) following year we started homeschooling....BEST DECISION WE EVER MADE....without the repeated exposure to the daily germs at school they have been able to further heal. We do not keep them quarantined! They continue sports, see friends, attend extra curricula classes BUT these are all things we know kids are not going to if they are sick. Friends know if they are sick we can't get together, most people don't take kids to sports when their child is sick...same with extracurricular activities I am writing this to give those of you in a dark, lonely place HOPE! We have our children again. Life is not perfect BUT I'll take this compared to 4 years ago ANY day. I thank God each day for the healing we have and pray we never return to that dark place again.
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