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jsl25

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Everything posted by jsl25

  1. jsl25

    Dr Chugani / IVIG / Other docs?

    Hi, My daughter has been a patient of Dr. Chugani for a couple of years, and I just received a letter from his office about a month or two ago that he has moved back to Chicago area. He has a position at one of the university hospitals there (can’t rememver which one). Keep that appt with Dr. L. It might be your best shot.
  2. DD (5yo) has been struggling with PANDAS for 1.5 years. Tested positive for Group A strep at first onset, but never again. Has tested positive several times for non-group A, however, often coinciding with a flare. Pediatrician, who tries to help but is a bit of a PANDAS skeptic, says that this kind of strep is just colonized in some people and that it doesn’t cause illness and doesn’t need to be treated. Dr. L has not been responding to my calls and emails. Not sure what I should do. Has anyone else dealt with non- group A strep in their PANDAS child? I’m wondering if a tonsillectomy is necessary.
  3. Thank you, bobh. I tried to clarify with my ped whether this meant it was Group B strep, but she said, “we can’t tell which group, except that it’s NOT group A.” So I guess my daughter may have any of the other types, but they don’t know which. And oddly, my doctor doesn’t seem interested in figuring that out. But that seems to be the theme in my struggle to get my daughter help for this past 1.5 years.
  4. jsl25

    Flare

    Hi Bttrfly1, I could have written your exact post this week. My daughter (5yo) had a perfect past 4 mos. Not a single tic, no rage, etc. Then this week the hyperactivity, obsessions and rage started with a vengeance. I have no idea why and I’m devastated. I’m sure the tics will follow shortly. She started a day camp this week - is she overtures? She has a slight stuffy nose - maybe a virus? We saw Dr. L last January but she has been unresponsive to my calls and emails. I put in three calls and emails to her last winter when we were going through and she never responded to us (even though we paid her $1200 fee and drove three hours to see her in Jan.). My ped is not helpful and doesn’t do any investigating beyond a strep test, and I can practically see her eyes roll every time I show up requesting another one I’m curious to know what her response to you will be. Will you please report back when you hear? And may I ask, how old is your child? good luck.
  5. jsl25

    Ibuprofen question

    Will you please share what brand of turmeric capsules and what dosage you give your 7.5yo? Thank you.
  6. DD has been on several abx over the last few months for a variety of illnesses, but her PANDAS symptoms have been relatively under control. After the the last round of abx to treat an ear and respiratory infection, her PANDAS symptoms have flared like NEVER before. She usually responds well to ibuprofen during a flare and I can get her back under control pretty quickly, but this time nothing I do is helping. Everyday her rage and emotional lability is worse. And her tics are bad, and she’s up at night multiple times. I think she had a vagknsl yeast infection during the last abx but i thought it seemed much better after a few vinegar baths. I’m wondering if this flare is due to her gut flora being off from all the abx or maybe due to yeast. How can I correct this??
  7. When you take him to the hospital, use the words autoimmune encephalitis. Maybe they’ll be more helpful looking into that and treating that.
  8. My daughter, age 5, has not been able to find any relief from her PANDAS symptoms which began at age 3.5 with a strep infection. That first flare was her 2nd strep throat infection of her life, and in addition to that, she had two perianal strep infections at the age of 1 and 2. So a grand total of 4 strep infections in her 5 years. Since that initial onset at 3.5yo, she has NOT tested positive for strep again, despite many swabs/cultures. However, her PANDAS symptoms have been waxing and waning since then. Dr. L has suggested a tonsillectomy and we found a local ENT willing to do it. It’s now up to my husband and me to decide if we want to subject our daughter to the risks of anesthesia and surgery even though she really has not had that many strep infections, and hasn’t had one in 1.5 years. This is proving to be a very difficult decision for us. We are desperate to help her find relief from this nightmare illness, but I’m just not convinced it will help. She is in the worst flare yet right now and there has been no strep preceding this one. Steroids and antibiotics aren’t helping. Any words of advice? Thank you.
  9. jsl25

    Ibuprofen alternative?

    Bigmighty- how do you give it to your kids? And how big are you kids (trying to figure out how much to give)?
  10. I’m not the OP, but I’d be very interested in seeing this. Thank you for offering to share. We were just told last week by Dr. L that we should consider a tonsillectomy. But we’re not feeling confident about it because my daughter has only tested positive twice in her life (she’s 5yo) for strep in her throat and twice for perianal strep. She hasn’t had any positive strep test in 1.5 years, despite ongoing PANDAS flares. Anyway, we’d love any info that could help us make our decision.
  11. I didn’t get my 4yo DD the flu shot this year due to her PANDAS that we’re still in the process of figuring out. Her regular ped told us to hold off until we get more info. A neuro we saw said it would be ok to give her one, and our first appt with Dr. L is next week, so I don’t have her advice yet. With all of the scary news this week on flu-related deaths, I really want to get her the shot, but I’m scared that’s the wrong thing to do. She also has asthma and I know that asthmatic children an be high risk flu patients. What are you all hearing from your PANDAS docs on this subject? Thank you for sharing as I make my decision.
  12. Good to know- we’ll keep that in her daily dose of supplements. Thanks.
  13. Thanks for your reply. According to the CDC, it’s 30% effective. And even if you do get the flu, if you’ve had the shot, your symptoms and length of illness are less severe. https://www.cdc.gov/media/releases/2018/t0112-widespread-flu-activity.html
  14. My daughter (age 4) had her first noticeable flare with what we believe is PANDAS about a year ago. Many doctors visits and no one was able to help us. We finally got in to Dr. T in NJ when she made a drastic improvement on her own (6 months after initial onset), so we decided not to follow up with him. Now, 6 months later, it all came rushing back. I’m trying to get into doctors appointments again. While we wait, I tried giving her ibuprofen 2xday for three days and she was 100% back to normal. Miraculous. Now, 36 hours off ibuprofen, symptoms are back. How long can I give her ibuprofen for? I realize this is not a long term solution. She’s currently not on any other meds except for a probiotic. And, I’d love to hear how people successfully battle these flares so I have some background to go into our specialist appointments with. Is it always a course of abx? Thank you. I’m so frustrated we’re back in this nightmare.
  15. Has anyone found a high quality Omega-3 for kids? My 4yo DD can’t swallow capsules, so something chewy or drinkable would be best. Looking for brand name recs as well as where to purchase. Thanks!
  16. Hi YBB, I’m reading off of the sheet our doctor gave us, and it says 500mg IV for 3 days. She weighs about 20kg (41lbs). I was very scared too, but the Solumedrol ended up being no big deal. The hardest part was putting in the IV on the first day, but that was only about 2 mins of drama, then she was fine. Really, we had next to no side effects. Just really sleepy at night, which was opposite of what they warned us about. And a little flushing about an hour after receiving the meds. My daughter was perfectly happy sitting in the bed eating snacks and watching movies and coloring. I’m more scared about whether this will actually have good lasting effects or if we’ll need to move on to IVIG. Shes being treated at AI DuPont in Wilmington, DE. We’re outside of Philly. Please feel free to private message me if you want to talk further. Good luck.
  17. I posted recently about my 4yo DD being in what we think is her second PANDAS episode. The first kind of faded on its own with next to no intervention (mostly because I couldn’t find a doctor to help us). I realized last week that Motrin every 12 hours completely eliminates all PANDAS synptoms (tics, aggression, OCD). I brought this up with our neurologist yesterday and he finally paid attention and agreed that this is more than a tic disorder and agreed that this change with Motrin shows brain inflammation. He wants to do three days of an IV steroid. Problem is that he wouldn’t dig any deeper to find the trigger of these episodes. What is causing this inflammation. She tested negative his time around for strep, but positive a year ago. I just don’t see how this steroid treatment will completely eliminate the problem. Has anyone found that it did give long term positive results?? He will not consider antibiotics because he does believe that she has any sort of active infection.
  18. This is the OP. I greatly appreciate everyone’s response and input. We are now four days post last infusion and it feels like I have my child back for the first time in a year. Her mood is amazing. She’s so happy and bubbly and not throwing insane tantrums like she was doing. She even looks better in her face and in her eyes. At first her tics were drastically worse and I got really worried, but just yesterday afternoon, they are 90% gone. It’s a miracle. I’m knocking on wood as I write this. I don’t know what to expect for the future or for long-term, but it’s so wonderful to have her back right now. She’s only 4yo and I believe this all only started one year ago. So I’m optimistic (perhaps foolishly so) that we can nip this thing in the bud. PP who talked about using ibuprofen and turmeric- would you please elaborate? My daughter does amazing on ibupreofen, but I worry about giving it to her for more than 1 week at a time. Also, please guide me on the turmeric. I would be very interested in learning more about using a more natural anti-inflammatory. Where could I get good information on this? This is still a work in progress and we are still awaiting second opinions. I want more investigation done about what is causing her flares. Although I’m glad for the neuro we have who was willing to do the steroids and will do IVIG if we need to, he won’t treat with abx and he won’t further investigate what’s causing this. His theory is that it’s autoimmune and we won’t find an underlying infection. And because he thinks this is an autoimmune reaction, he doesn’t believe abx are warranted or helpful. Which is why I will seek other opinions on those topics, because I think there is more to it. Thanks again everyone.
  19. I’m the OP of this post, and just wanted to update in case anyone searches this topic down the road that we just finished the 3 days of high dose IV Solumedrol (steroid). My 4yo daughter did great, no big side effects. Her mood and behavior has improved TREMENDOUSLY. It’s like I have my old kid back, except for the tics. They are worse than ever. Our neuro said, “That’s surprising, but give it a few more days.” I’m getting scared that it’s not going to help. I’m so glad to see her behavior and temperament improve, but it’s so distressing to see her tics this bad. Many advice from others who may have gone down this road? Is there still hope that the steroids will help?
  20. My daughter is in a flare right now and we had some bloodwork done. Her Anti-DNase B strep levels came back above normal. Her doctor explained it to me as meaning that she was recently exposed to strep and it's still in her system. But, he won't put her on antibiotics because the strep culture was negative. Is this normal? Given that she's in a flare and showing proof of recent strep infection, should she get on antibiotics??? I'm so frustrated.
  21. That’s a very interesting article. Thank you for finding it and sharing it. The difference we’re seeing with my daughter is absolutely night and day. It’s nice to have my observations validated.
  22. OP here - for some reason my earlier reply re-posted. Not sure why...sorry about that. Thanks again for the links and suggested reading. I will look into it. I have a neuro appointment on Friday, so I will certainly be bringing this up. We're located in a suburb of Philadelphia, and it has been a STRUGGLE to say the least to find a PANDAS friendly doc. We have driven to northern NJ, Baltimore, Wilmington, and all over the Philly suburbs to get help.
  23. Thank you for your reply. I really appreciate it. We are waiting on a neuro appointment when they call me back to schedule, and am appt with Dr. L. Unfortunately we don’t have any PANDAS/PANS friendly docs in my area. I searched endlessly last year for 6 months. It’s a hopeless feeling to not be able to get help. Anyway, I am so surprised one of your docs said Ibuprofen is ok indefinitely. And I was worried about a week! I just don’t know what to expect from these flares...how long they last, are abx necessary, can Ibuprofen shorten the duration (or is it only a band-aid), etc.?
  24. Thank you for your reply. I really appreciate it. We are waiting on a neuro appointment when they call me back to schedule, and am appt with Dr. L. Unfortunately we don’t have any PANDAS/PANS friendly docs in my area. I searched endlessly last year for 6 months. It’s a hopeless feeling to not be able to get help. Anyway, I am so surprised one of your docs said Ibuprofen is ok indefinitely. And I was worried about a week! I just don’t know what to expect from these flares...how long they last, are abx necessary, can Ibuprofen shorten the duration (or is it only a band-aid), etc.?
  25. jsl25

    Desperate for help in PA

    Yes, we have. I'll private message you.
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