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Everything posted by Kimiejoe

  1. I just provided an update. See post regarding update to 9 year old with Pandas. The IVIG he had was through NIH.
  2. DS was diagnosed with Pandas in March 2011. Had IVIG after having initial symptoms which began in Dec 2010. After IVIG flares were slowing down. It took time - about a year - for DS to catch up on social behaviors and learning. At age 11 today he is 95% better. He is on Azithromycin every day (3 ml) and has had very few flares. DS still has minor OCD issues but it is manageable. DS will say "mom you know I have to do this twice, or I have to make it equal. ". So we smile at one another because it's still a part of him that he and I both recognize is part of the after effects of his Pandas. He is finally back to being a normal child and I so proud of all his accomplishments. Parents, it does get better it just comes in small steps!
  3. Chad Your journey is amazing! Thank you for finding this post and writing up your experiences! My 8 yr old son was diagnosed with PANDAS last year and underwent a series of tests. It all started with strep infections back to back over 3 months. He had OCD, hallucinations, brain talk where his brain was telling him bad things, separation anxiety, and had the same questions about why God was doing this. I told him about your story and his eyes lit up with excitement. He was amazed that someone else had gone through this the same as him. What was really eye opening is when you described there being 2 people inside of you. When I mentioned this to my son, he completely understood. And I finally did too! After IVIG he is doing so much better and is nearly back to his normal behaviors. I just wanted to thank you for telling us your story as it has brought clarity into an environment where there has been so much fog. Sincerely!
  4. Also consider that the NIH study does a lot if tests. This provides a baseline for your DD for years to come. And if something else is going on you will know with the blood work and tests. The spinal tap is scary, even for adults. NIH can give your child a calming Rx before to help with her anxiety. We faced the very same issues: do we or don't we? In the end we were glad we went through with it for several reasons. The care at NIH is wonderful. You really feel like these folks understand what you're going through instead of looking at you like you're crazy. The IVIG itself can be helpful and that's what you're trying to do - help your child.
  5. I've seen some posts about parents using ibuprofen for their PANDAS kids so I am wondering ....what does it help with? My DS 8 was dx'd with PANDAS not quite a year ago and went they IVIG. Now 10 months later he is very defiant on almost every issue. His OCD is manageable as he is on anti Rx every day. Does ibuprofen help the brain inflammation that could be causing this behavior? Any thoughts out there?
  6. This is so helpful for us parents of PANDAS kids. I have been struggling with these very issues and want to thank you all for your insights!
  7. Thank you so very much!! I have not heard of taurine and will need to look up the proper zinc dosage. We will also try the memory skill games. KO you hit it right on the spot! Problems with multi step tasking!
  8. We too have has memory problems with DS 8. Teacher emailed about DS failing a test and thought DS has a processing problem. Am not sur where to go from here. Pediatrician prescribed ADHD Rx but not convinced this is the best route. Any other suggestions?? Memory loss seems to be short term and comprehension. Thx all!
  9. Wow! I did not know that. Thank you! We will try that route!
  10. DS 8 was Dxd with PANDAS last year. Went thru IVIG and have had our ups and downs. Mostly ups though. Today DS teacher sent email saying DS is not paying attention in class, is having trouble remembering tasks and instructions, and is really falling behind. Older DS 10 is ADHD. I'm wondering if DS 8 is showing signs of ADHD and if it's common among PANDAS kids? DS 8 is on proh Rx for PANDAS. I just didn't think ADHD would follow. I'm wondering if this is because of his PANDAS dx or something completely separate??? Please let me know if anyone has gone through these issues within 1 yr of IVIG and PANDAS dxd. Hope this makes sense! Thank you!
  11. My DS 7 at the time has 1 IVIG and is about 87 percent better. We caught it early and the majority of his PANDAS symptoms have disappeared. DS still has some OCD issues but it is manageable. IVIG is an option but its not an overnight cure all. We have benefitted from IVIG thankfully but don't know at this point if a second dose will be imminent.
  12. Kansas City - try Dr Metzel. He has attended Swedo seminars and I think believes in treatment for PANDAS. He is not our regular ped, but we so go to that office and see a different more conservative Dr. He is aware of PANDAS in our DS. I wish you luck!
  13. I also sent an email to Boston Children's Hospital. I told them PANDAS is very real and explained our results with continuous Rx. I also asked them to educate themselves on the subject as this is not something made up by hundreds of individuals. Hope it helps! Prayers for Elizabeth!!
  14. Dr Metzel is the only Dr I know of that is sympathetic to PANDAS patients. He is in the St Joe hospital bldg in KC.
  15. Yes! I am in KC too. Our ped office has one Dr that is getting into the PANDAS pursuit. He has met Dr Swedo and has been helpful with the other Dr we see in that office. His name is Dr Metzel. Good luck and many prayers to you!
  16. My PANDAS DS has flares with viruses or even allergies. He is on Zithromax 3 ml once per day. I think it is common for small flares in situuations such as those. In our house we handle them with kid gloves and realize he's going through one of the episodes. The good news is that DS has not gotten strep since being on the Rx. I hope you can find more answers on this site!
  17. Wow! Thank you so much for educating me! I am not sure what our next step will be with my oldest DS 10, but I think it's worth pursuing!
  18. Interesting that my DS also has these fears right before bedtime. I just thought it was his reaction to being overly tired. The episode lasts for about 3-4 min, sometimes longer. I comfort him which makes him feel better. Then he distracts himself by flipping crabby patties - to help him think about something he enjoys. He's a Sponge Bob fan!
  19. Does anyone know if you have one child diagnosed with PANDAs, how common it is for a sibling to have PANDAS as well? We have focused on our DS 8 yrs old and he has had IVIG for PANDAS which so far has been successful, but our 10 yr old DS has some classic symptoms as well. OCD, trouble in school, but he's been diagnosed with ADHD and on Rx. Wondering if we shouldn't be looking for something else??? DS 10 is seldom ill, had night terrors when he was 2-3 yrs old-still doesn't sleep well but has adapted. Bed wetting until about age 7 and immature for his age. Just curious if PANDAS is common among siblings..... Thanks!
  20. We had DS write down words or pictures of what his thoughts were - on paper - and then throw them away to get rid of them. Helped a little but with distraction.
  21. Great list! Way to go in prepared!
  22. We are at about 7-8 weeks post IVIG. The first week or two were very slow going showing very little improvement. During weeks 4-5 DS began showing about 25 percent improvement. Around 5-6 weeks things got better with his symptoms. Just returned from NIH a few days ago and DS has been doing great. Like you I was so confused in the beginning when the PAN DAS symptoms appeared. It consumed our lives! With the advice on these forums it has been a God sent prayer as I now realize there are other kids out there going through the same things. You are not alone and the fact that you have found this site is telling of your commitment to you child! Prayers go out to you and your family!
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