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  1. Today
  2. Can you help me solve this problem?

    I don't see a link to the page, but highly doubt that there is a valid conclusion that treatment for a year provides assurance of no relapse. Relapses are very common, and there have been trials of abx that document relapses or flares, even after a year of prophylactic doses. I hope this comment doesn't depress you further, but if so there is still hope. Our child improved dramatically with puberty - though not all do. I have found that the job becomes chasing all the triggers (including non-strep), as we don't seem to have a cure for the immune dysfunction, except possibly puberty.
  3. I am curious I have been researching chances of relapse and this page seems to indicate that if given treatment for a year (did I read that right?) or is it the stats were taken a year after treatment...that there is a very small chance these children will have relapses if the original strep or whatever bug is taken care of..I believe she said 25% had a very minor pickup in symptoms with only 2% of the 200 have a complete relapse...so how accurate is this? does anyone have facts and percentages of what the chance of a relapse is? I am doing everything I can for my boy and just am looking at the future....hoping. He has come back around to pretty much 100% normal, we have completed one month of Augmentin with at least 3 more to go...This has worn me down and made me depressed...I pray for all your childern and hope we can put an end to this and let these kids get back to their lives without ocd and tics.
  4. PANS/PANDAS Dr. in SoCal?

    Hi Mare44, I’m in Washington now, but we found a very good primary care doctor Dr. Hau Bai in Chino Hills. She’s a pediatrician as well s microbiology scientist. She Is smart enough to know we would have had lots of problems processing insurance and other services with a diagnosis of “pandas” What she diagnosed was “unknown autoimmune illness” with a referral from DD’s psychiatry doctor to UCLA, they did an assessment report. This got us everything covered under insurance. It also got us a case manager with regional social services. We tried three different pandas aware doctors but none took insurance. That was in 2012. So it appears not much has changed. We were going to head up to the Stanford clinic, but relocated to Washington state And found help at children’s hospital. I think another good place to start would be in children’s hospital Irvine. They have some good interrogative doctors that can rule out Lyme and the like which can cause many of the pandas like symptoms. so I’m a little confused by your post. You have a diagnosis of “pandas” I assume this is a clinical diagnosis? Did they not suggest getting a Cunningham panel to confirm the diagnosis? Wouldn’t the doctor who made the diagnosis be the one to refer you to a specialist? They shouldn’t have just left you hanging with the diagnosis and have no idea how to treat the illness? Some suggestions: paper trails are prudent. Keep copies of all prescriptions, X-rays, scan and the like in chronological order. I made a detailed write up with DD’s complete case history kept electronic records of enerything. This helps with getting new doctors up to speed quickly. My wife made a daily journal. Tracking all medications, supplements, symptoms and behaviors. It is important to note, if possible, the pathological behavior symptoms and manipulative behaviors. This helps with the Physiatrists and social workers. If your daughters symptoms continue, you may end up going through a lot of doctors. hth
  5. Probiotics recommendation

    We have been on Culturelle for couple of weeks. She started getting better, but we also ended 6 weeks azithromycin. So I wasn't sure what to attribute improves Behavior to. She has been on the renewed life for about 4 days. She is getting much better, but still has some anxiety attacks. Today was one of her best days in a long time. She was actually able to befriend someone who is bullying her at school. They apologized to each other for the mean things I have done to each other. But later in the day she had to panic attacks while trying to get to two events she was obligated to be at. I could cut out first one if necessary, because I want to try another one, the Pro 15.
  6. Yesterday
  7. PANS/PANDAS Dr. in SoCal?

    hi, I just joined. My 10 year old daughter was just diagnosed with pandas and I am looking for a good doctor that is more pandas literate. My daughter had a strep and flu infection at the same time, and shortly after developed ocd (germ contamination) she has always been a slightly anxious child (biting fingernails, etc. ) but now things have progressed .She is an amazing artist and refuses to draw now, she refuses certain foods that she used to love . Everything revolves around fear of germs and getting sick. She has made great strides with behavior with CBT, and sleeps well, but we are concerned because last week she developed a tic where she repeatedly taps/rubs her forehead. We love in Southern California and would love to find a doctor that could treat her. Ihave called most on the Pandas network list and none take insurance . If anyone has ideas or suggestions, we are open to several different avenues (naturopath, western, etc)
  8. Last week
  9. Possibly PANDAS?

    Funny I just got a notification from this response. I have not been on this forum in a very long time. I am so happy to report that I have a very healthy happy 16-year-old daughter who is no resemblance to the child that was in such turmoil. I will however say it has contributed to the person she is kind, compassionate and confident. I just went for an IEP meeting today which we did not even try Start one until eighth grade where things got worse before they got better but I have to say once over the hump of entering puberty things really started to balance out. She has not used one accommodation from her bare bones IEP she has good grades healthy social relationships and almost no residual OCD. I hope this gives hope to the parents that are going through this. My main advice and one of the hardest lessons I learned and she actually helped me see it was not turning her into something that needed to be fixed with all the desperation of trying to find her help she did feel like that for a time. Funny once I excepted exactly how she was whether it was going to last forever or not is when she started to get better. Sending love and good vibes to all of you and hope for a better day.
  10. Possibly PANDAS?

    Many years after posting, I'm checking through old accounts and thought this deserved a reply to give others hope. I notice that I had deleted my messages, but I just want to say that the very typical and rather full-on symptoms typically associate with PANDAS (OCD, inability to speak, eventual inability to walk) eventually went away, but it took a couple of years. He is absolutely fine now and I see this as fitting into how PANDAs can impact some children at a very specific time in their lives. The parents didn't ever get much help. 'Social services' for a while thought that he may have been mistreated (something I knew wasn't the case).. then the doctors switched to a diagnosis of Chronic Fatigue and never shifted from that. It really did appear to match PANDAS though and now he's fine and thriving and it all seems like a nightmare or a dream of old. It's in the past. I hope that others here, feeling desperate due to the condition and lack of help, reach the same place. Thanks.
  11. One thing you want to watch out for, is whether the child's symptoms (including in the future, whenever things change) are at least in part caused by SIBO (Small Intestine Bacterial Overgrowth). I have a suspicion that some of those that get worse on many different probiotics (and there are lots) may have SIBO. We never tested for SIBO, but we definitely got worse on a number of probiotics, including gutpro and culturelle, for what its worth.
  12. waxing and waning

    Hi Supermom13, the term waning is used in the same way that "lessening" might be used. The symptoms are reducing. Then if they start to increase in severity or frequency, they are said to be waxing, getting worse. It sounds like your son is doing very well if he only has a couple of tics a day. For many people, waning could mean going from a score of 5, 5 being a high level of symptoms, down to a 3--simply getting better. Or it can be a time of no symptoms at all. Hope that helps.
  13. Chicago area support groups

    My email address is: mshuminas@comcast.net Please contact me, if you’re interested.
  14. Motor Tic

    Yes I need to clean up his diet - I've read a lot with like artificial coloring, etc. He takes a magnesium vitamin but just Flintstone vitamin which I know is not the best so I need to look into getting him something better. Just feel like all this came out of no where and it's giving me anxiety which I know is not helping him because he'll shrug his neck or something and then look at me to see if I was watching him. I just don't know how to relax myself.
  15. Probiotics recommendation

    So..... I got the Renew Life 30 billion capsule. I had started my DD with the Culturelle 5 billion powder about a week ago. She was also taking the Luvox 50mg. We had just increased her to 75mg and I witnessed her in school and it scared me. She was like someone possessed, shrinking back in fear as someone walked by, asking me if she would get sick. I called the doc and we moved her back to 50mg. That is when I got her on the Culturelle. I noticed almost instant improvement. She started playing with friends again. But she also had couple extra bad episodes, saying she hated us, etc. I gave her the Renew Life 30 billion capsule 3 days ago. Again, almost instant improvement. A lot of improvement. She would wake and not mention throwing up (her obsession) but then retreat later in the day. I will give her one capsule in the morning and one at night and see how she does.
  16. Chicago area support groups

    I'm also in the Chicago area . . . would be interested in meeting up.
  17. Has anyone who belongs to UHC gotten approval for IVIg for 2018? We have tried several codes all of which have been denied and appealed. If so, would love to know codes used.
  18. Motor Tic

    Well i am the same way overly concerned. I think i pretty much googled every thing i can. Which is bad for me. My sons tics started 2 months ago with blinking, grimmacing and a few others. Those seemed to fade and now we has a throat clearing one. He also has allergies and he is on zytrec so i am not sure if thet is helping with his tics. Diet and vitamins are key. Is your son sleeping enough, taking vitamins like magnesium, fish oil etc and maybe clean up his diet?
  19. Like this? Came from my back tonsil throat area. However, I did get a good accwhack in the face a week ago and thought maybe it was related. Very firm blood ball. Like a pearl not as hard.
  20. Motor Tic

    Yeah that is how they described it and that they are common in childhood - didn't really seem overly concerned. However me on the other hand, has googled and read every article known to man kind because I just don't understand this stuff. How long have you dealt with this? What does your son do? I feel so alone on this. ;'(
  21. Chicago area support groups

    Thanks, MomWithOCDson. I’ve been reading posts on this forum for over a year, but just joined this week. I am grateful for your frequent contributions. You have a lot of valuable insight.
  22. Chicago area support groups

    Hi Maryangela -- We're in the Chicago area and I'm unaware of any local face-to-face support groups, though, admittedly, I'm not active in the Facebook group. I'm guessing that between work, family and the additional demands PANDAS puts on all of us, finding the opportunity to meet up on a regular basis is a tough one. That's why I check in here at least a couple of times each week...I can do it when I can steal a moment from all the other stuff! ;-) We did once have a day-long "retreat" at a motel outside Indy that a bunch of us Midwestern families were able to attend; there were folks there from Illinois, Indiana, Michigan and Wisconsin, as I recall. Maybe another "summit" like that would be something to see if we can manage?
  23. Empower Plus

    My DD took this supplement for a year when she was 9 and weighed 50 lbs. She took 2 pills in the morning and 2 in the afternoon (you don't want to take it too late in the day b/c of all the b vitamins). I was told you had to treat yeast before taking it (can't remember exactly why...maybe because b vitamins can increase yeast)? It did seem to help her mood. I think we dropped it after a while because we wanted to try alternative treatments, and there are only so many pills she could swallow in a day. I don't believe you can open the capsule. It has to be swallowed.
  24. I know there is a Facebook support page for PANDAS/PANS, but are there any in-person support groups or “Meet Ups” for PANDAS/PANS in the Chicago area? My DS 13 had his first major onset of PANDAS at 8 years old after a dental appointment (although we now believe his first onset was at 14 months old when he stopped eating solid food after a virus). We struggled for years to get a diagnosis and treatment. I would love to share information with other parents, regarding treatment, and how to recover from the trauma and years lost to this disorder.
  25. Motor Tic

    It could be a transient tic that could last a few months. Is that what your doctor said? My son is having motor tics at the moment so i am trying to clean up his diet, less screen time, magnesium gummies etc...
  26. Probiotics recommendation

    I think that probiotic supplementation can be almost as individual as antibiotic treatment. Some people don't respond well to some strains, others respond especially well to others. And as for how much? I think that's individual, too. When my DS was on antibiotics, we gradually brought him up to a probiotic regimen that was right around 200 billion per day. Any more and he got gassy or bloated and uncomfortable, but at about 200 billion of a variety of strains (we did Culturelle which is lactobacillus gg, sach b and a high-potency mixed strain via Renew Life), his gut seemed to do well and tolerate the antibiotics reasonably well, too. As with almost everything in this PANDAS journey, I would probably start low and maybe with a mixed strain that has a good chance of surviving the antibiotics and repopulating the gut with healthy microbes. Then build up and/or switch out as you see how your child responds. Good luck!
  27. Probiotics recommendation

    MomWithOCDSon, my 11y DD has PANDAS. We checked for Lyme came up negative. The OCD has been there for years, but it has gotten really bad in the last year. I was looking at the VSL#3, the 115 Billion. What you think?
  28. My son had a strong aversion to the word “ok”. This particular trigger went away after he had a tonsillectomy. He had 100s of triggers, and is down to 1. His treatment over the past 3 years include antibiotics, tonsillectomy, IVIG, NAC, aggressive treatment for yeast, and herbal antivirals. We’ve discovered that yeast imbalance has a huge impact on his OCD symptoms. Saccharomyces Boulardii made a huge difference. He’s also used Candicid Forte. We tried some pharmaceutical yeast treatments. Had success with Nystatin, but Diflucan caused a dangerous dehydration issue.
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