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About Bttrfly1

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  1. Bttrfly1


    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.
  2. Bttrfly1


    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.
  3. Please recommend your immunologist from DC or Northern VA. Why do you see your immunologist? We also are patients of Dr. L.
  4. 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..
  5. Bttrfly1


    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..
  6. 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!
  7. Bttrfly1


    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.
  8. 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?
  9. Bttrfly1


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


    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?
  11. Thank you so then how do you treat a flare? Do you wait it out?
  12. 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?
  13. Bttrfly1


    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
  14. Bttrfly1

    Turning Back Pages

    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.
  15. 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?