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NVAmom

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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
  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. Some will. Ours did not. We paid out of pocket for IVIG. However, insurance did pay for plasmapharesis.
  15. We had this problem. Initially Insurance would only approve 3 pills at a time. after 2 weeks they would not cover any refills. We appealed multiple times and ended up paying out of pocket.
  16. 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.
  17. Hi T.mom, thanks for the reply. It actually was at Georgetown. Curious why you think it wasn't. Dr L was prescribing dr. Did you see results for your dd? If so what and how long before you noticed improvement? Did she return to school immediately? Thanks for your prayers! That is what we need:)
  18. 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!
  19. 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 t
  20. 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.
  21. 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
  22. My dd9 never had typical strep symptoms. Dr L recommended we remove them. Exacerbation after Removal with eventual slow steady improvement. I would definitely do it again. Hope that helps. Feel free to PM if you have any questions.
  23. 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
  24. 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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