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Bttrfly1

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Everything posted by Bttrfly1

  1. Thank you. We also see Dr. Fox but also too early too tell. The reviews that I have seen about her is good though and then you don't hear a peep about them... so I'm assuming it's like the lyme message boards (a lot of chatter pre and during treatment) but when they get better no one goes back to mention that. Our labs with her showed high viral titers and she is working to address those. No lyme. We just had our results meeting with her. I do like Dr. L and we'll continue to see her for our annual (unless there's a major change). My son caught strep twice after IVIG, T and A, and on aug
  2. thanks. How is his approach different from Dr. L? We see her but she seems to have gotten so busy she can't return phone calls and emails she responds with a simple yes or no with no additional follow-up. I also heard Dr. L's staff from Georgetown went to work with Dr. Shofrir. I am looking for a second opinion on treatment and need someone who is willing to communicate.
  3. Has anyone seen dr. Yuval Shafrir at mt. Sinai? Baltimore
  4. That's really great to hear @maryangela. Do you mind sharing how your doctor came to the solution of doing monthly HD IVIG? Did she request labs in addition to seeing him in person? My son is a fairly mild case (according to Dr. L) and I have lost faith in that office. Of course, I want my son back 100% but how can she prescribe that he needs another round of IVIG and oh come in next week with a credit card when you haven't even taken a look at his labs? We in fact, through our integrative doctor found he is fighting myco, ebv, and hand, foot, and mouth. He is also low IGA (and he was the firs
  5. Update. My son caught strep again. First time since T&A surgery and Dr. L is recommending another dose of IVIG. What is your experience with her just throwing out IVIG as the next step without reviewing any recent lab work or ordering labs? She says (which is relayed through her office manager) that my son shouldn't be catching strep after T&A and on augmentin. But I see a lot of parents whose kids are catching strep even after T&A and IVIG. What is your experience. I'd love to know as I'm not jumping in and throwing another money down on a treatment that may only work temporarily.
  6. Hi my son is 8. Diagnosed at 7 and started IVIG a few days after he saw Dr. L. Dr. L’s office did call me back. I spoke with nurse Brenda and she relayed my concerns to the doctor. Then she called me back with what do to. For my son, she said treat with Motrin 3 times a day for two weeks. She said it does the same thing as a steroid without leaving the immune system weak. Her office manager also called me back later that day to tell me the same thing. I would be persistent with them and keep trying. They respond but it seems not as fast as we’d like.
  7. Hi, I did call Dr. L but her office is on vacation until Monday. The new guy that manages the phones can only manage the phone. ANd he told me to call back on Monday. What is the brand of home strep you use? I don't trust the one I have anymore. It is a green box and starts with A. I did run him over to our pediatrician and we did the rapid and the other one that looks for more of the strep bacteria. Both negative. Which relieves me but then what is making him flare? We did put him on Motrin and that is helping. He's calm and I don't see the wildness that I saw late last ni
  8. Please recommend your immunologist from DC or Northern VA. Why do you see your immunologist? We also are patients of Dr. L.
  9. What are you doing to help get rid of a flare? We are truly in our first flare since doing IVIG a year ago. We started Motrin..
  10. Hi. My son is in a flare and I feel lost. We did IVIG a year ago and things were going back to baseline until about a month ago. At our year checkup with Dr. L she didn’t seem too concerned about his mild tics and prescribed a 3 day steroid burst. We finished those about a week ago but I’m not sure it worked because his behavior this weekend was horrible. A first .. where he raged. He’s been hyper since and today I noticed his pupils are dilated. Should I test him for strep even though he’s on antibiotic? We started Motrin today. Should I call Dr. L tomorrow? Thank you..
  11. My son developed a new tic over the weekend and I don't know what to do about it. It's mild but it is hard for me to not see. His chest goes up and down in short repeated spurts when he is reading or watching his iPad. He says it doesn't bother him but I'm wondering what I should do. It seems like his tics move (if that makes sense). It first started with blinking, moved on to breathing, and now this. It seems that one replaces the other. He is being treated with long term antibiotics, received IVIG last summer, and on supplements. He also had T&A this past November. I can't say he has bee
  12. I am not sure I want to take care of another child that may have this. I have two kids already (one PANDAS and one who is normal). I don't want to risk having a child with this and going thru the worry, anxiety, pain and finances. Is there some sort of test? Also, I suspect my husband is not clear of his lyme. What are the chances of the baby getting that through him. He's not healthy - so should I keep a child that comes from not the best sperm? I'm being honest. I'm about 3-4 weeks pregnant.
  13. Can anyone help me understand why PANDAS is passed genetically like this? Would you consider having another baby knowing that there is a 50 percent rate that your next kid could have this?
  14. Forgot to add that my husband also has hashimotos. I have no known illnesses. I do not want an ill baby. Thank you.
  15. Can PANDAS run in families? Recently learned that I am pregnant and trying to determine my next step. I do not want to have another PANDAS child. What are the chances that the next baby will also have PANDAS? Also my husband has chronic lyme disease and no testosterone. He has been injecting hormones to replace his Testosterone. How I got pregnant is beyond me. What are the chances that this baby will not have lyme or PANDAS?
  16. Thank you so then how do you treat a flare? Do you wait it out?
  17. Doing some research on the message boards. What happens if you ride out a cold? Will immune system eventually right itself? Can a kid with a PANDAS get over a flare from a cold without steroids?
  18. My son had been fighting a cold virus which seems to have triggered some tics. His dr prescribed a steroid burst but today his symptoms seem a little better. What will steroids do and should I watch and wait until symptoms are worse? I'm so scared for him / will steroids prevent another flare? He had ivig in June. Thx
  19. Thank you, Jan. We are new to all this and freAking out watching the tics come back. Is there anything I cAn do to stop it? When will it end? We did tAke him back to dr to get cultured. So stressful. Is there a flare after 10 weeks post iVIG too I feel like I read that.
  20. Hi again my son had ivig this summer and it's now 10 weeks post ivig. His tic of peeing has come back timing about right with a cold. Is this normal? A breathing he is mildly doing. Is this turning back the pages and when will it end?
  21. Thanks you are right.. both my kids are carriers too. Never presented with sore throat or fever. Frustrating.
  22. School is about to start and I'm worried about strep exposure. We are recently diagnosed PANDAS and got IVIG in June. We have been advised to get 504 this year - here's my question, what do I do if someone in his class has strep and they let me know? Other than anxiety what am I supposed to do? He is on a year of antibiotics- do I watch for flare and test for strep? Do I call and ask for stronger dose of antibiotics? Do pAndas kids flare with common cold virus? Should I call doctor? Thanks for your comments.
  23. What about David Band? He's one of the recommended drs. in the northern Virginia area. We don't want to wait to see Dr. L. Any experience with him?
  24. that's wonderful! we live in Fairfax, va. Anyone closer? Also I'm new here.. is there a connection between PANDAS and Lyme?
  25. Hi, I just got back from our pediatrician's office about my DS. He started acting off (btw - no one noticed except for me for a few weeks!). Symptoms were frequent urination and then this breathing thing, where he's also sucking in air (deep breaths and air hunger). I encouraged Dr. to do a strep test because I saw something about PANDAS on my facebook page. Dr. did it and throat culture and blood test showed positive for Strep A. He got on a 10-day course of Cefrin? Urination kind of got better to the point where I don't obsessively watch for it but in exchange the breathing is now worse
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