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NVAmom

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NVAmom last won the day on April 20 2014

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About NVAmom

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  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
  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, separati
  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 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.
  5. 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.
  6. Opps...don't know how but I typed a smiley face instead of Dr B
  7. 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.
  8. 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
  9. 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.
  10. Thanks for all the responses. I know nothing about Lyme and have a lot to learn.
  11. 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?
  12. 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'
  13. I'm so sorry you are experiencing this storm. I'm praying for your peace and wisdom. Please keep us posted.
  14. Hi. We are looking at paying out of pocket for IVIG. Are you willing to share info on the amount you paid and what your child weighed? I'd love to be prepared. Thanks - Suzanne

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