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bigmighty

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  1. Like
    bigmighty got a reaction from wisdom_seeker in IVIG study results   
    It doesn't actually say that all of these kids remained symptom free. I only skimmed, but one shows a kid who kept getting strep with re-emergence of symptoms each time (patient E). After IVIG, at every new strep infection the ocd returned and the child went on on a treatment dose of augmentin for up to a month. It looks like the kid was on prophylactic antibiotics, too but was getting new strep infections/symptom re-emergence anyway. That's not to say that the IVIGs weren't beneficial or positive. But I wouldn't call this 100% symptom free since the child obviously still has PANDAS and continues to become symptomatic sporadically even while continuing on daily antibiotics.
  2. Thanks
    bigmighty got a reaction from Robinhubb in New diagnosis   
    Are you doing anything anti-inflammatory?  Try ibuprofen 3x a day for a week and see if it helps.  Or try turmeric 2x a day.  If she does even slightly better while inflammation is reduced, it's helpful to know, as it suggests something autoimmune is involved.  Steroid tapers have helped my son several times.  If you can convince a doc to prescribe them for a couple of weeks, that may be something worth pursuing.
    So sorry you are going through this.  Sending virtual hugs.
     
  3. Like
    bigmighty got a reaction from tj21 in PANDAS teen with severe OCD   
    I am so sorry.  DS's long-lasting remission came from a 3-week steroid taper coupled with augmentin 875 2x daily.  At first, he got a bit worse, then remission came two months after the taper ended.  He remains on antibiotics and turmeric.    Would he be willing to try steroids?  Clearly needs to reduce brain inflammation.  Again, terribly sorry.
  4. Like
    bigmighty got a reaction from Bearmom in IVIG Study info   
    Thanks for sharing this. My son was in the 2011 study, so I was fascinated to see this. NIH promised to send me a copy of the final full report, once published. The last I heard from NIH was about nine months ago for a follow-up phone interview. They assured me I would be informed when the full details were finally disclosed. And I have received nothing yet.
  5. Like
    bigmighty got a reaction from Sirena in insurance appeal advice   
    Not getting anywhere finding insurance companies that cover IVIG for PANDAS. Are there any out there that are covering it for PANS rather than accompanying CVIDs?
  6. Like
    bigmighty got a reaction from MissionMama in An offer for all, possibly more appropriate for newer families   
    So, basically you're saying that IVIG and PEX (antibiotics/steroids) didn't help your child, but other interventions did? Would you be willing to share? What did you find to be effective? Has she attained a lasting remission? Thanks!
  7. Like
    bigmighty got a reaction from MomWithOCDSon in A Panda Goes to College!   
    DS's doc insists that he have a single room, also. DS has a CVID and and IgA deficiency so very little immune function. Glad to hear that this seems to be an acceptable solution for your DS. Not yet sure how mine feels about it. Thanks for the report. We have been planning on regular deliveries of nutrition shakes and such. Seems like we're on the right track. Hope we get to a place where DS is not strep reactive anymore also. Congrats to your son for making the transition!! Very happy for you.
  8. Like
    bigmighty got a reaction from MomWithOCDSon in A Panda Goes to College!   
    Thanks so much for posting this. DS is a senior in HS this year and just applying to schools. Does your DS still become clearly symptomatic when in the presence of strep and, if yes, what plans does he have in place for recognizing the onset and seeking treatment? Our biggest concern is that DS doesn't seem to be aware that he's begun a exacerbation. Our other major concern is that DS doesn't ever feel hunger and has few preferred (tolerated) foods. He is an extremely low weight highly selective eater who stops eating altogether when in the presence of strep. We can easily see him dropping instead of gaining his freshman 15. Any additional advice would be great. Thanks - Suzanne
  9. Like
    bigmighty got a reaction from cynditk in Michel12: IVIG update   
    Have you tried steroid taper at any point? DS did augmentin 875 for a few months, then added a three week steroid taper. He started seeing positive changes during steroid use, but lost them again after he was done w/the prednisone. Doc said to bear with him. Two months after the steroids, DS went into remission. Doc said once infection is fully gone, brain inflammation needs to die down for symptom abatement and this takes time.
  10. Like
    bigmighty got a reaction from EAMom in Interview w/Dr. Swedo   
    She briefly hit on the idea of having monthly throat cultures just to stay a step ahead, once a child is in remission. Seems especially helpful for kids going off to college.
  11. Like
    bigmighty reacted to beeskneesmommy in Interesting hotel north of Dr. B's office   
    Well, that takes care of both Dr.'s L and B!
  12. Like
    bigmighty got a reaction from MomWithOCDSon in Update: I Need to Brag   
    Double yay!
  13. Like
    bigmighty got a reaction from MomWithOCDSon in Video of DS (NIH inspired kid "invention")   
    DS entered and won a national contest a while back. The "invention" (if you can call it that) was inspired by his participation in the NIH clinical trial. Thought some of you might get a kick out of the video for his submission:
     

  14. Like
    bigmighty got a reaction from Missmom in Video of DS (NIH inspired kid "invention")   
    DS entered and won a national contest a while back. The "invention" (if you can call it that) was inspired by his participation in the NIH clinical trial. Thought some of you might get a kick out of the video for his submission:
     

  15. Like
    bigmighty got a reaction from philamom in Video of DS (NIH inspired kid "invention")   
    DS entered and won a national contest a while back. The "invention" (if you can call it that) was inspired by his participation in the NIH clinical trial. Thought some of you might get a kick out of the video for his submission:
     

  16. Like
    bigmighty got a reaction from kimballot in Hang in there! We are doing well   
    Oh yay!
  17. Like
    bigmighty got a reaction from 3boysmom in Understanding the Brain   
    https://www.coursera.org/course/neurobio
    Free 10 week class starts in late April - Understanding the Brain: The Neurobiology of Everyday Life
  18. Like
    bigmighty got a reaction from Janny in Got no where fast!   
    Ugh. So sorry. I remember bursting into tears (privately) after our appointment with a renowned specialist in our area that had taken six months to get. The doc reprimanded my son (age 12 at the time) and told him to stop wasting his time and buckle down and do ERP and start managing his life-long mental illness. He actually told him "You are mentally ill. You will always be mentally ill." After I peeled myself up off the floor and sobbed a bit because there was no hope, I made an appointment with yet another specialist that took more months to get. That doc is the one who helped get our son into remission. Don't give up. Take a few days to clear your head and then figure out what's next. It's exhausting, but you're doing it. Keep up the good fight.
  19. Like
    bigmighty got a reaction from Hrosenkrantz in Got no where fast!   
    Ugh. So sorry. I remember bursting into tears (privately) after our appointment with a renowned specialist in our area that had taken six months to get. The doc reprimanded my son (age 12 at the time) and told him to stop wasting his time and buckle down and do ERP and start managing his life-long mental illness. He actually told him "You are mentally ill. You will always be mentally ill." After I peeled myself up off the floor and sobbed a bit because there was no hope, I made an appointment with yet another specialist that took more months to get. That doc is the one who helped get our son into remission. Don't give up. Take a few days to clear your head and then figure out what's next. It's exhausting, but you're doing it. Keep up the good fight.
  20. Like
    bigmighty got a reaction from qannie47 in Got no where fast!   
    Ugh. So sorry. I remember bursting into tears (privately) after our appointment with a renowned specialist in our area that had taken six months to get. The doc reprimanded my son (age 12 at the time) and told him to stop wasting his time and buckle down and do ERP and start managing his life-long mental illness. He actually told him "You are mentally ill. You will always be mentally ill." After I peeled myself up off the floor and sobbed a bit because there was no hope, I made an appointment with yet another specialist that took more months to get. That doc is the one who helped get our son into remission. Don't give up. Take a few days to clear your head and then figure out what's next. It's exhausting, but you're doing it. Keep up the good fight.
  21. Like
    bigmighty got a reaction from MissionMama in PANS/PANDA with negative ASO titer? So desperate!   
    My DS was accepted into the NIH clinical trial and his titer score was deemed "too low to calculate" during his initial exacerbation. He did have an elevated Anti Dnase B test, indicating some sort of autoimmune challenge. But he has never had an elevated titer score then or during subsequent cases of strep.
  22. Like
    bigmighty got a reaction from EAMom in NIH PANDAS study participants -- what is your kids status today?   
    At the start of the NIH clinical trial, they were recommending only 500 mg per week of Azithro. DS weighed in the 72-77 pound range at that time. They wanted him to take it all at once in a single dose, but he was on liquid medication back then and it was multiple syringes of medication and it upset his stomach. He ended up getting permission to switch over to taking half of an Azithro 250 pill 4x weekly. He was only on it for a brief period before he got strep and was switched over by ped to a high dose of Cefdinir.
  23. Like
    bigmighty got a reaction from EAMom in NIH PANDAS study participants -- what is your kids status today?   
    I heard from NIH staff that DS was not the only one in the clinical trial who got strep after IVIG. I heard from other parents of kids in the trial that NIH changed its recommended prophylactic antibiotic and dose at some point during the trial, but don't know to what.
  24. Like
    bigmighty got a reaction from EAMom in NIH PANDAS study participants -- what is your kids status today?   
    Here is the update. Sorry in advance for the length -
     
    DS had his first IVIG at NIH in May of 2011 at age 12. He seemed only slightly better after that. DS had his 2nd IVIG at NIH in June of 2011, around the time of his 13th birthday. Within a week after that 2nd treatment, DS was 85 – 90% well in terms of resolution of PANDAS symptoms. Additionally, his lifelong textural sensitivities diminished greatly and his long-time difficulty in processing foods containing corn disappeared entirely. In July of 2011, DS got Strep A, while on prophylactic Azithromycin prescribed by NIH. All of his OCD symptoms quickly returned in full along with the sensitivities, with the addition of extreme paranoia. By the time we left the study in November 2011, DS remained in an exacerbation of PANDAS symptoms more significant than the initial exacerbation that brought us to the NIH study in the first place. His anxiety was moderate to high and his rituals took up 4+ hours per day.
     
    In December 2011, DS was placed on Augmentin 875 2x daily by Dr. B. In February 2012, DS continued on Augmentin, but added a three week steroid taper (starting at 35 mg prednisone daily). On April 16, 2012, DS’s light switch simply turned back off. He went from full OCD one moment to literally zero OCD the next. His symptoms resolved as quickly as they arrived, after 16 1/2 months of OCD and anxiety. In April 2013, DS reduced to Augmentin 500 2x daily. In June 2013, he attempted to reduce to Augmentin 250 2x daily. Within 48 hours of the reduction, the majority of the PANDAS symptoms had already returned. We returned DS to Augmentin 500 2x daily, and the symptoms all gradually disappeared within two weeks. In early August 2013, DS was reduced to Augmentin 875 one-half tablet 2x daily. That slight reduction appears to have been successful. So, DS is in “remission” and doing well, but it appears to be dependent upon continued use of Augmentin. At Thanksgiving, we will try again to reduce to Augmentin 375 2x daily and see if the symptoms return.
     
    In addition to PANDAS, DS has been diagnosed with a Common Variable Immune Deficiency. His overall IgG hovers in the high 500s to low 600s. At present, we have been advised not to treat the CVID unless his IgG drops lower, as it is suspected that the low-dose IVIG used to treat the CVID might end the current PANDAS remission. Additionally, DS has recently been found to be compound heterozygous for the mutations C677T and A1298C in the MTHFR gene. To treat this, DS added liposomal methylb12/methylfolate drops about one month ago. DS has experienced a significant increase in social cognition since the introduction of this supplement.
     
    DS is now 15 and a sophomore in HS doing well socially and academically. He has been on antibiotics for nearly three years, so far.
  25. Like
    bigmighty reacted to dut in Good articles to give to school?   
    I love this article
     
    http://thewalrus.ca/a-feverish-debate/
     
    iIt doesn't speak directly to what school needs to do but I think it's a great look at what it is really like for kids/parents, it's realistic and addresses some of the medical side. Also, it isn't afraid to address the 'controversial' aspect of PANDAS. We used that for the 'feel' and the NIMH PANS page for the big-name-institute back up stuff.
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