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NVAmom

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Posts 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.

     

    :)

  3. 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.

  4. 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.

  5. 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.

     

    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.

  6. 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.

  7. 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:)

  8. Thanks for all the replies. I'm sure there is a specific reason the dr had (and probably told me) but a i get overwhelmed with all the info when we go....especially since both dd and ds are seen back to back on the same day. So, i usually take someone with me (husband or my mom) but last time I went on my own. I plan on keeping her home. Was just curious about others.

     

    I hope all of you see improvement soon.

  9. Hi there, Dd9 had PEX this week (3 exchanges over 3 days). For those of you that have had PEX I'm wondering what precautions were recommended afterwards. The pharesis nurse and hemonc dr said dd could return to school. Prescribing dr said she should be home from school for 8 weeks due to risk of exposure to others who are Ill. I'm going on the advice of prescribing dr because I'd rather be safe than sorry. Just curious as to others experience. Thanks!

  10. Hi Sally, my ds13 had his second IVIG the same dates as your son. His first IVIG Sept 6 & 7. After the 1st we saw improvements about 2 weeks afterwards. Almost complete disappearance of ALL tics, Less hand washing, joking, more focused on homework, more rational. Then all symptoms that had shown improvement slowly started returning 5 weeks after IVIG. Which I guess this is why our dr said IVIG once a month. The week before his 2nd IVIG he had a virus and not only was all progress lost he was actually worse. Unfortunately, we are yet to see any progress from last weeks IVIG. We've decided to take him out of school for now to hopefully prevent further illnesses and losing any more ground.

     

    Hope this helps. Praying you will see more glimmers of hope:)

  11. DS13 has been on augmentin 875mg or azithromycin twice a day since Oct 2009. DD9 was on augmentin 500 mg twice a day since Oct 2010 and recently increased to 875 twice a day. They both take a probiotic before breakfast and right before bed. They have had no complications from the antibiotics. I do feel they have gotten sick less frequently. The only illnesses have been viral. DS onset of PANDASwas 2 years. Dd was 18 months so they both went a long time untreated.

  12. When we were just beginning Treatment I had the same question. The progress tends to bre slow and gradual - sometimes hard to see day to day. Often The progress resembles a saw tooth pattern.

     

    Based on the advice of many members on this forum I started rating PANDAS behaviors daily. For my ds I rate germ contamination, rages, mood, attention, repetitive questions, memory. For my dd I rate separation anxiety, clothing, rages, attention, sleep. Many smart phones have free aps to track symptoms.

     

    However - to answer your question more specifically - I would say it took weeks to see small improvements.

     

    Hope that helps:)

  13. My dd9 also had trouble with foods that have red dye. We realized that dyes in temp tattoes, shampoo, lotion and even chap skin cause a reaction..the hard way. She picked a chap stick out at the store as a reward when she was 6. She put it on and looked like a clown because it was all around her lips. We didn't think my much about it until the next AM when she had a red stain all around her lips. She refused to get dressed, refusedto get on the bus...my husband carried her on the bus 3 times and each time she ran off the bus. She had never had an issue going to school before that. Then we put 2+2 together.... Doesn't matter if the dye is in food or skin products.

  14. When ds12 (90 lbs) is really having a hard time sleeping we give him 50 mg benadryl AND 3.5 mg melatonin. melatonin alone seems to make him rage the next day but when taken with benadryl he does not seem to get the rages. Praying you both get rest.

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