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Everything posted by airial95

  1. Take small, baby steps first at home. Start by leaving the room to go to the bathroom alone for 1 minute, then 2, then 3, and continue to increase until you can be gone from her sight for while at home for longer periods. Then start the process at school, same thing. Start by taking her to class, leaving her there for 5 minutes, once she is okay with that, then go for 10, etc....until she's able to stay at school longer and longer periods. Initially, you'll still be at the school, (make sure she knows that) but just not within her sight. It's a long process, and terribly hard because you
  2. Rifampin has been a game changer for us. We have chronic strep - it was the first antibiotic to keep the strep at bay (prevent re-infection), and it reduced symptoms almost entirely. When we stopped a course of rifampin, my asked if we could go see the doctor - when we got there, he told him "when I was on the red medicine, Harvey was gone (what he calls his OCD), now that we're all out of the red medicine, Harvey is back. Could you give me more red medicine?" He was 4 years old at the time.
  3. Has happened to us multiple times. We have been on abx consistently for almost 5 years, even on combinations of 2 and 3 anitbiotics. Some strains of strep are resistant to certain antibiotics, so it is entirely possible to get strep while on abx, even multiple abx. A 72 hour culture can be done to determine the specific strain, but they are not always reliable if a good swab wasn't taken.
  4. Kim, no hard feelings at all, like I said, I'm sure you didn't mean for your words to come across the way they did. Kayanne, my son is the first to really present with typical ADHD symptoms, and even with PANDAS treatments they didn't subside until we added an ADHD medication (vyvanse). The undeniable success of the vyvanse in controlling the ADHD is leading our team to think of it separately from the rest of his PANDAS symptoms. (The theory being that if it was caused by the inflammation/immune response the ADHD meds wouldn't have an impact, and would actually compound the issues.) We
  5. My kids can't have the live viral vaccines because my treatment for AS is immune suppressive, and live vaccines are not recommended for anyone in the household of someone on my meds. So it has nothing to do with their PANDAS, or if they are HLA B27+, but more to do with my treatment. We didn't know about my status until about the time my son was diagnosed - so I honestly can say it wasn't a factor in any of our decisions up to that point. Had we known sooner would it have been a factor? I doubt it, but can't say for sure, it may have affected what additional research we looked at. We d
  6. My son has tested + for strep multiple times while on full strength abx, and even a combo of 2 and 3 abx. When we see a recurrence of symptoms it means 1 of 2 things 1) a new strep infection or 2) he has been exposed to a strep infection. Just because they are on full strength abx does not make them totally immune to picking up new bugs.
  7. I appreciate the additional info, but in my son's case there is absolutely no connection to his onset and vaccines. Furthermore, we have a genetic history of the HLA B27 genetic mutation, which makes our family predisposed to autoimmune and inflammatory conditions genetically, I had chronic strep as a child and our family also has a family history of Rhuematic Fever and strep complications. Two different PANDAS experts have said unequivocally that I had it as a child, and one look at my medical history would leave no one in doubt - my chart reads like a textbook for PANDAS until I was in my
  8. His onset was within days of a positive strep infection - no correlation to the vaccines. His MMR was at 15 months. We put together a very detailed timeline of his onset, vaccinations everything because Dr. Murphy at the Rothman Center published a case study on him as the youngest documented case at the time. So she looked deeply into any - and all - other potential causes. His onset was within 24 hours of finishing a 10 day course of antibiotics for a strep infection. He is textbook. We continued to vax after onset - and even after diagnosis - although on a one at a time basis. He
  9. My son is 6, in 1st grade. He moved up this year with 7 other classmates, so his grunting tic that came back over the summer is nothing new for them. So he hasn't had problems in class. They all know about "Harvey" (what he calls his OCD/PANDAS). But the other day he said that an older kid said something about it in car line to him. I could tell it bothered him because he told me "Mommy, I know my grunting annoys you and daddy, but it annoys me too. I wish I could stop" (at which point I asked where these feelings were coming from, we aren't annoyed, just worried, etc...and that's when
  10. I'm one that you could call "on the fence" Neither of my kids had any negative reactions to the standard vaccines - and my sons sudden onset was directly related to a well documented strep infection (impetigo) so while he was young at onset (19 months) there was no temporal relationship to vaccines at all. (We plotted a very detailed timeline of his onset that included vax info). Now that we know they have PANDAS, we take each shot one by one, evaluating each of them on a case by case basis related to risk vs. benefit for OUR child. And THAT is the key thing that folks on both sides of
  11. If he really wants to go to school that badly, he may be willing to do the work that is required for CBT/ERP. It doesn't work for many kids because they just aren't ready for it - either they have not addressed the medical side of it, or they are just unwilling to put in the work required. We were "lucky" in that my son was so young at dx, our initial attempts at CBT were really more of how we should/shouldn't respond to his OCD (his rituals involved us immensely). Was it hard? Yes. Did it suck? Yes. But because of his age, there was never an issue with him complying. He's almost 7
  12. We used an excel spreadsheet and visually graphed progress. It helped immensely to see how quickly patterns emerged based on different treatments, etc... We went even more specific to our chile than the Yale OCD Scale, mainly because when we started our log our son was still a toddler (2 years old - he's almost 7 now) and the typical OCD scales were difficult to apply at that age. We listed every symptom/behavior we wanted to keep track of, and rated them daily on a scale of 0-9. 0-3: Normal age appropriate behavior (because many symptoms can be seen in a normal child as well, just no
  13. We waited almost 3 years before we decided to put my son on any ADHD medication. We hoped that it was just a symptom of the PANDAS and would resolve itself with all of the other symptoms. It didn't. Finally, at almost 5 years old, we pulled the trigger and put him on Vyvanse. What made the decision for us was his impulsivity had gotten so out of control that 3 times in one week he almost got hit by a car letting go of my hand in a parking lot darting out into traffic. At that point we decided that child on drugs was better than a dead one. We chose Vyvanse because it had a low dose a
  14. We just went through this when finally getting our kids teeth cleaned/checked for the first time in almost 3 years. (They are both headed for braces, so we felt we couldn't keep putting it off!!!) First off - I agree with the others about talking to your PANS doc/ped about the sedation/NO2. Our doctor used NO2 with no problems, but neither of my kids have MTFHR issues. But I still checked ahead with our doctor. Same thing with upping the abx before the appointment, check with the doctor!! Call the dentist ahead of time and discuss a couple of things with them: First - that yo
  15. Keep it simple, and relevant to what will happen in the class room. I always describe it simply as rheumatic fever of the brain - response to infection causes neurological symptoms including loss of fine motor skills, cognitivie abilities, OCD, ODD and ADHD tendencies as well as some vocal and motor tics. Period. And then I move on to what they will see in the classroom from my child and how it will impact their ability to learn. If the teacher is interested and asks for more - great, give more info. But they don't really need to know the different treatments (unless its something
  16. wedge, Where in Florida are you? We have a support group for PANDAS parents in Florida if you're interested, PM me. Not sure how many there are treating it in adults (I think there may be one or two), but they may have some suggestions.
  17. There have been those that have been able to wean their kids off of abx, but I agree with deedee, having a back up plan in place would be a good idea. As for the pneumovax, it really is a personal choice. We have never had an issue with the standard vaccines, though after diagnosis we take each one on a case by case basis, and we chose to do them on a protracted schedule (one at a time with several weeks apart) so we could clearly document issues. That being said, we opt out of things like the flu vaccine because in my mind the risks (potential flare) far outweigh the benefits (maybe not
  18. Just another thought - we are not dealing with Lyme or co-infections (no + or IND bands across the board through Igenex), but my son has had to use many of the stronger antibiotics - our issue was chronic strep (always + swabs). Even when he was on full strength antibiotics he would test + again. When he tested + on a combo of Azith and Augmentin, we added rifampin for 30 days - it completely knocked out his tics and made a huge difference. At the end of 30 days, he asked our pediatrician for "more of the red medicine" because it "made Harvey (his OCD) go away and now that the red medicine
  19. We found sleep to be critical to my son's overall recovery. We found that he was more suceptiblie to exposures and even mild setbacks when he was tired. Mid year last school year I changed my work schedule to have the kids home after school instead of doing after care. He would nap 2+ hours at least 2-3 days per week and the change was astonishing. He had his last IVIG over Christmas and his teacher asked if they used something different because it seemed to last longer this time around - nope, only change was the naps. Our pediatrician explained it to us this way - their immune sys
  20. OCD is often the last lingering symptom for many kids because their OCD rituals, compulsions, etc...have become engrained. Like MomwithOCDson suggested, it might be time for therapy. We found that with our son especially, because he was so young at onset, all other symptoms would significantly improve/resolve within a few weeks of changing up abx with a new strep infection - but the OCD seemed to linger. We started therapy and our first therapist (who was awesome, so sad she got married and moved away) pointed out that not only were we accommodating his OCD (which is often the case to m
  21. Lot's of us have seen that when our kids actually get fevers, their PANDAS symptoms seem to get better, go away even, only to return when the fever passes.
  22. I hate to say it, but yes - not only is it possible, it's also likely. For a few reasons. First of, Dr. Murphy at Rothman has done research that has indicated a high incidence in siblings where there is a family history of autoimmune disease, rheumatic fever, or chronic strep. The correlation increases when the family history is on the side of the mother. So that makes it not only possible, but likely if you have any of those past issues. One of the other prevailing theories of "classic" PANDAS is that it can be caused by a particularly virulent strain of strep, which is why you may se
  23. LLM's response was pretty comprehensive, the only thing I will add is to keep a detailed log/journal daily of your child's symptoms, any treatments, even what they ate that day if you start to suspect food issues. It seems like you're already trying to go back and connect the dots, but if you keep detailed records going forward, it will probably help you A LOT for your upcoming appointments. We used an excel spreadsheet and scoring system that another parent here suggested (0-3 = typical age appropriate, 4-6 = difficult/challenging, 7-9 = WTF just happened to my kid???) We listed on
  24. I'll also add that having done CBT when new flares come up, while it doesn't eliminate the OCD, it makes it much more manageable. My kids both tested positive for strep about 2 weeks ago, and while we have had some bumps in the road, they have remained functional and the resulting flare no longer controls our entire household like it used to. They were still able to participate in VBS, play with friends, and my daughter even went to a sleep over last night (she has bad separation anxiety). And it's a good part a result of them knowing and using some of their CBT tricks and us knowing how to
  25. There are some doctors leaving with Storch. They are leaving Rothman at the end of July, but the new facility won't be taking new patients until October from what I understand. My daughter's therapist Dr. Nadeau is making the move - that's how I found out about it. The new facility is in Tampa, just over the bridge from St. Pete, not too far from the airport. Closer for us, as we are in the Tampa area. (hoping we don't have a major set back before they start taking patients because my daughter doesn't want anything to do with anyone other than Dr. Josh!!) We have been very lucky with
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