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Bttrfly1

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  1. Bttrfly1

    Shafrir

    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 augmentin. The second time my son caught strep, L told Andrea that he needs IVIG. But no explanation why but I'm assuming to boost his immune system. But Dr. Fox is working on that.. I then asked if he could switch antibiotics because it looks like the augmentin isn't working and Dr. L relayed, "he shouldn't catch strep on augmentin. IVIG." I called back and asked if Dr. L could spare a few minutes to explain her decision but no calls.. I'll go see Shafrir too.. I don't know what he'll say but maybe a second opinion from another pediatric nuero will help.. or not help. My son is doing fine. Since the switch to Azithromycin (advised by Dr. F), the flare has gone away and we're doing all the supplements.
  2. Bttrfly1

    Shafrir

    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. Bttrfly1

    Shafrir

    Has anyone seen dr. Yuval Shafrir at mt. Sinai? Baltimore
  4. Bttrfly1

    New Tic

    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 first time too and I don't know if they used the right IVIG solution to address that either). How are you affording multiple IVIGs? Insurance? If you don't mind sharing I'd like to know. Finally - Dr. L's office has repeatedly promised to call me back and it's been two weeks. I feel like now they don't care and all they want is the money. Or if I'm going to be positive, she received so much business that she needs help responding to everyone.
  5. Bttrfly1

    New Tic

    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. How many rounds of IVIG?
  6. Bttrfly1

    Flare

    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. Bttrfly1

    Flare

    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 night. Why is he flaring? WHY? We are in Northern Virginia. I have an appointment with Dr. F late August and just made an appointment with an immunologist/allergist called Dr. A in Fairfax. His immunoglobulins are pretty normal minus IGA, which was only slightly low.. but he came recommended as PANDAS friendly and willing to puzzle it through. Thank you for responding back.
  8. Please recommend your immunologist from DC or Northern VA. Why do you see your immunologist? We also are patients of Dr. L.
  9. Bttrfly1

    Dr. K Interview, IVIG & Question

    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. Bttrfly1

    Flare

    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. Bttrfly1

    New Tic

    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 been 100% tic free - he has week(s) where he will be tic-free and then a short flare that seems to go away. This one, bothers me though. He is doing great otherwise. Gained some weight since IVIG (though he's now 8 and wears size 6-7 clothes) and can focus, handwriting is great and he loves school. I just don't want to go off-track again and wondering .. what should I do? I did give him a dose of motrin. thanks!
  12. Bttrfly1

    Pregnant

    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. Bttrfly1

    Here we go again...

    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. Bttrfly1

    Pregnant

    Forgot to add that my husband also has hashimotos. I have no known illnesses. I do not want an ill baby. Thank you.
  15. Bttrfly1

    Pregnant

    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?
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