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  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. Chicago area support groups

    My email address is: mshuminas@comcast.net Please contact me, if you’re interested.
  9. 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.
  10. 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.
  11. Chicago area support groups

    I'm also in the Chicago area . . . would be interested in meeting up.
  12. 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.
  13. Last week
  14. 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?
  15. 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. ;'(
  16. 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.
  17. 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?
  18. 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.
  19. 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.
  20. 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...
  21. 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!
  22. 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?
  23. 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.
  24. Dr. K Interview, IVIG & Question

    If you google “liebertpub.com” you. Will come to an article entitled, “Clinical Management of Pediatric Acute-Onset Neuropsychiatric Stndrome: Part II- Use of Immunomodulatory Therapies.” If you view the article as a PDF, recommendations are on page 578 and more info on course of care on page580
  25. Does anyone know any ENTs who will remove tonsils and adenoids in Washington state or British Columbia, Canada for kids affected with PANDAS
  26. Probiotics recommendation

    Lordchallen -- I think the rotation that's being referred to here is with respect to probiotics, rather than antibiotics. Meanwhile, giving different versions/strains in the interest of keeping the gut flora varied and strong. As for rotating antibiotics, I'm not sure if there are some protocols that actually call for rotation as opposed to "pulsing," but I believe these specialized antibiotic protocols are most common to Lyme treatment, rather than PANDAS in a general sense. You might search the forum for "Lyme antibiotics," and that may render some responses along those lines.
  27. Gut pro probiotic

    My son uses Gutpro. I put it in smoothies, I make in the blender. I believe you can mix it with cold liquids and cold food.
  28. Probiotics recommendation

    What is meant by "rotation." How do you rotate antibiotics?
  29. Seeking recommendations for naturopaths and acupuncturists in the greater Chicago area (western suburbs preffered but open). Want to work with great, recommended professionals that might be familiar with Tourette’s and treating children. Thank you!
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