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  1. Has anyone tried this to regulate the immune system? Does it work? Side effects? Recommended for my dd 7, but not a cream a pill at night. Im intrigued but just looking to see what others have seen? Also, I know its not an acute cure but more of a long term thing, right?
  2. We see Dr. B in NY. He recommends lots of supplements, I am on board with strengthening his immune system. However, I am at a total loss for how to get him to take all the supplements. He's a picky eater anyways. He is dairy free, and right now, this is his first PANDAS episode he is not eating well. Sneaking it into food isn't working well, he will just say, this tastes bad! How do you get these great immune boosters and inflammation reducers into the kids. He is only 4.5 years old. Thanks for your advice! Also would love advice on how to get started on GF or Yeast Free diet….feeling overwhelmed!!
  3. My DD,diagnosed at almost 5 y/o, received one HI dose IVIG at almost age 6, is now almost 7 and doing really well. She was low IgA & IgM, but also low on all her vaccine titers. I'm not sure if she "failed" them, as she did have titers but very low. She also test with "some of the lowest strep titers" doctors have ever seen. Seems to me some children are making extra antibodies, and some are under producing but the effect is the same. I'm no doctor, that's just my observation. Also, insurance paid for IVIG due to IgA and IgM being low. We have not vaccinated her since PANS started, not sure it would be helpful if she doesn't produce enough titers anyways.
  4. My dd,6 is getting her bottom molars, and complaining like crazy of ear pain, and she is flared up. Nothing else going on that I'm aware of. Has anyone had the 6 year molars cause a flare or ear pain, trying to decide if she might have an ear infection or if its just the teeth.
  5. This is from moleculera's website, there's a lot of info there. PANDAS and PANS diagnoses are based upon defined clinical characteristics. The Cunningham Panel™ tests for autoantibodies directed against specific neurologic antigens and receptors, and measures the state of the stimulated immune system against HUMAN neuronal cell lines at a single point in time. The results from the Cunningham Panel™ are provided to the physician as an aid in their diagnosis of PANDAS or PANS. There are treatments that are known to affect the test values of this panel, which include: recent treatment by intravenous immunoglobulin (IVIG), plasmapheresis or plasma exchange, and steroid treatment. My understanding is several of the markers tested in the cunningham, are inflammatory markers, that show inflammation: support the Autoimmune encephalitis theory, so many results are normal on other tests for PANDAS? PANS kids, but the cunningham is very targeted but complicated and needs interpretation from a qualified dr.
  6. I was reading this post, since this is the first week that my youngest child has shown PANDAS symptoms. MY dd, almost 7 was diagnosed over 2 years ago, has received 1 high dose ivig, and is doing amazingly well, but as you all know it was a LONG 2 years. Her 4 year old brother was acting so strangely last week, and I decided to have him tested for strep, despite no symptoms, anyways, he was positive. Despite having been through this before, it is still gut wrenching for us parents, we still feel helpless. I am more educated, and I know which drs to see and which not to see, but I am still wondering, can we get a diagnosis, how long will it take, how bad will he get while we wait, what can we do in the mean time, etc? One thing I wanted to mention is that my daughter had some thyroid numbers they were watching closely, and they were wondering about hashimoto's, but after IVIG, after she returned to us 100% more or less, everything returned to normal. Her thyroid, her IgA and IgM numbers, everything that was "off" returned to normal within 6-9 months after ivig. I don't know what this all means, I just think that these poor kids are just in such a bad spot, everything in their auto immune systems is just not working right, hence the PANDAS. For our DD IVIG was a game changer, she received 1 dose, within 1 year of onset. I think the timing is really critical, and early/aggressive treatment is important. My heart goes out to every child & parent dealing with PANS/PANDAS but especially to those in the early days. Having been through it once, I think those early days are the hardest. Keep strong, trust your gut, and fight for what your PANDAS child needs.
  7. I don't know that anyone can answer all of your questions specifically. I can tell you that my dd age 4 1/2 at the time she showed PANDAS symptoms, was tested for Lyme, and that I feel your frustration in the illusive and unsure diagnosis. We never saw a tick but she did have a couple of weird bites that summer (I thought mosquito or spider). Looking back we had neck pain, fatigue, etc, but we didn't recognize it all at the time. Her test results sound similar to your sons, some important bands like 39 were IND, and we did treat for lyme. But I never got that yes we are 100% positive she has lyme dx, even I still some times wondered if we were treating her unnecessarily. But then we re-tested after 9 months of treatment and her test was more positive, with lots more band + and IND. It's such a tricky things with kids, but I can tell you treating for while is better than waiting and seeing when it comes to lyme. In our neighborhood, we have had 3 other kids yet positive, so we know its here! Keep following your gut, make the best decision you can with the info you have, and find a doctor you are comfortable with. Good luck..
  8. OUr dd just had high dose ivig, she has PANS and low IGA and IGM. My understanding is that IVIG is made up mostly of IGg, also you can not give IgA intravenously (it would be dangerous) that's why IVIG is made up of IgG. Our immunologist and well as neurologist feel that low dose ivig probably does not help PANS/PANDAS, because we considered that too before deciding on high dose. The low dose would help the immunodeficiency but not likely to help PANS/PANDAS. Therefore we went for hi-dose to try to help both issues. We might follow up the high dose with low dose monthly for a few months. So far no big change, a waiting game for us. But I don't think there is any issue with being low IgA and receiving IVig. Good luck.
  9. Our dd age 5 1/2 is two weeks post ivig. We have not been one of the people who saw an immediate improvement. In fact, we saw a big flare in PANS symptoms about 2-3 days post ivig. I'm glad that we we had heard from other parents ( not doctors) that this could happen. Based on how bad the flare was, I was terrified, but she recovered very very quickly given the severity of the symptoms. She is doing ok now, but not sleeping at all. We have had our fare share of sleep problems like most of you probably have too. Usually though the sleep problems occur in a flare and now that her day time symptoms seem very much under control, yet she's still not sleeping?! I am wondering if anyone else saw a problem with sleep post ivig? Also, any other ideas to help with sleep? We use theanine, melatonin, and magnesium. As you know the sleep thing is so important, critical, and vital for these kids (and our family). Any thoughts would be welcome. Thanks!
  10. We had some genetic testing done and it indicates our DD has only 1/2 of the DOCK8 gene. If a person is missing both halves they would be very very ill, no one is really sure what missing 1/2 does. However, DOCK8 is linked to NK cell production and those missing the entire gene are very susceptible to viruses like HHV-6. So it seems there must be a link.
  11. Our DD age 5 1/2 takes Acyclovior 200mg twice a day, and it has been much more helpful for her than antibiotics in treating her PANS. Some of her docs are upset she's on it, which I don't understand, but they see it as unproven and unnecessary. She has very elevated HHV-6 titers and a possible genetic deletion indicating she's prone to viruses like HHV, this drug has been soooo helpful.
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