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Posts 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 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. 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. 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.

  4. 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?

  5. 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. 





  6. 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. 

  7. 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..

  8. 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.


  9. 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.

  10. 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. 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

  12. 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.

  13. 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. We went back today for a follow-up and I asked for two courses on a different antibiotic. Dr. refused and said she would only treat if he tested positive on throat culture. I also requested appt. with Dr. latimer to rule out or treat him for PANDAS but that isn't until June 6. Is there anywhere I can go to treat sooner? Dr. Walsh in Leesburg - or a empathetic dr. who will diagnose? Please send me recommendations. There has to be more doctors out there.


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