NVAmom

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!

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.

Our Insurance covered the plasmapharesis with exceptiom of about $1000 copay per child. I think insurance ended up paying less than$10,000 with the negotiated rate. (have to look up,what they paid). Both had positive results / gains until dd returned to school and lost ground. We pulled her from school and she had with a steroid taper to help her return to where she was before. I think the plasmapharesis allowed the healing but being out of school helped her maintain the progress. Hope that helps.

Dd has no tics and was 9 at time of PEX

Ds 13 responded to first IVIG with decrease in tics, rages, OCD and improved mood. Slowly all symptoms came back. Repeated IVIG and 2nd treatment did nothing. He had plasmapharesis 2 months later with amazing and much longer lasting results. Dd10 had no improvement after IVIG but amazing results from plasmapharesis.

Ds and dd were in PICU only for the insertion of the line. Once they woke up they were given thier own room in the pediatric hematology / oncology unit. The PEX took place within the that room. Feel free to PM me if you have more questions. Not sure where you are going. We were at Georgetown.

Opps...don't know how but I typed a smiley face instead of Dr B

We've seen all 3. They all have a diffrent view but all are great. Mccabe can get you started with antibiotics but in my opinion she would be a starting point but you would want to get in with an expert (dr L or My guess is you can probably get into McCabe the quickest.

How long has it been since they both had PEX? Was this with Dr. L? Both had PEX at Georgetown in Dec and dr L was prescribing dr. After 1 month dd was sleeping in a bed (slept in floor for years), changing clothes everyday (hadn't done so for about a year) and complete disappearance of rages. Ds had significant decrease in tics, was participating in family activities (before it was hard to get him out of his room) and was the happiest I've seen him his entire life (he's 13) My one word of caution would be returning to school. Dd9 returned to school after 8 weeks post pex and lost significant progress within 1 week. The change was so dramatic we have removed her from school for the rest of the year and are looking at an online school for next year. Feel free to pm me if you want more info.

DS showed improvement after IVIG that lasted 6 weeks. IVIG was repeated without any improvement. DD showed no Improvement after IVIG - actually maybe a little worse after IVIG Both had PEX with amazing improvement. I would do PEX again. My only regret is we didn't do it earlier.

Thanks for all the responses. I know nothing about Lyme and have a lot to learn.

I know all to well that being around someone that is sick will cause my ds and dd to have an exacerbation. What about being around someone with an active, untreated Lyme infection? Could that also cause an exacerbation?

Forgive me if I say something someone already posted. I didn't read them all. This is what has helped us. 1) Ibupfroen at the first sight of a meltdown. Yes, I know it has dangers and try to use it sparingly but an out of control, impulsive child can be a danger to themself. 2)We gave up on the typical American childhood. I know that sounds awful but it decreased our stress tremendously. When making plans with family or friends they know we might have to cancel at the last minute without warning or just part of the family will be able to go. Extracurricular activities were stopped. We've found that insisting a raging PANDAS child go somewhere was always setting us up for failure. 3) I agree our dd and ds do not have much control over it which means as their mom I have to control the situation. Which has meant asking another patent to pick up and drop off the child that can go do activities and I'll stay home with the raging one. Or if I have to go, I've gotten a babysitter before and had ds use his allowance to pay for it. I know it's harsh and not sure it's right but does let him no he can't control the house. Hope that helps:)

I'm so sorry you are experiencing this storm. I'm praying for your peace and wisdom. Please keep us posted.