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otksmama

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  1. You are right, pr40. There is something going on with him. He does need help, but does not want it.
  2. My spouse and I are not well. And it really centers around our child's PANS. While his most current episode was the big one, I know his first was in toddlerhood. I knew something was not right then...that it wasn't just a common childhood sickness. My spouse did not agree. And with others chiming in that our son was just fine, I quickly became the nut who was just seeing things or worse, looking for something to be wrong. Even though my spouse agrees now something's a little off, we still cannot get on the same page. All of this after the debilitation, after years of come and go tics and other behaviors that didn't make sense. He simply says things aren't as bad as I think. While I'm making huge efforts at healing my son and coping myself, our diverging viewpoints on this are just devastating. We have been able to pinpoint the original flare as the start of our disconnect. But we are not finding ways to reconnect...esp since he STILL doesn't believe there are significant issues, much less that this is even PANS. Anyone else experience this? Any words of encouragement or advice?
  3. Ok silliest question of all...does 23and me test for MTHFR mutations, among others? if I do this, we don't need the individual MTHFR blood test right?
  4. What is the difference between testing for potential methylation issues via 23and me vs a urine test for folinic acid, methyl B 12 and glutathione?
  5. Whoa, that's pretty powerful. We haven't done any testing. It feels overwhelming to me, but if it could help my child with those things, I WILL figure it out! Any tips? We are going to see a functional medicine provider next week. Can you tell me about how you tested, assessed results, determined appropriate treatment, etc.?
  6. Big mighty can you say more about the social cognition improvements you saw after treating methylation issues?
  7. In some recent discussions there has been mention of autoimmune encephalitis, as if it is something different from PANDAS /PANS. I'm confused...isn't PANS autoimmune and brain inflammation? Could someone clarify for me?
  8. Qannie what does dr k say about all of this? I don't understand the differences either...pandas IS an autoimmune disorder, causing brain inflammation. Can someone clarify the above discussion that seems to imply pandas is not autoimmune or inflammatory?
  9. So I'm hearing that 23 and me is best, also cheapest--and most comprehensive. LLM--were results from this test what also informed you of your issues with NAC metabolism? Are these things that need to be addressed permanently through supplementation? And what exactly is the supplement? Is NAC for this or something else?
  10. How do you correct the entire methylation pathway? What did you do after the two weeks of improvement? And what improvement exactly did you see pr40.
  11. I'm trying to decide whether to test my child for methylation issues, the MTHFR gene test. For those of you that have and are supplementing for over or under methylation, can you tell me what changes you've seen as a result? Are they significant? Subtle? Was there a physician guiding you through the process? Is supplementing considered a lifelong necessity? Thanks so much for anything you have to share!
  12. There are certain standards of care and ethical practices that must be adhered to from any healthcare provider, regardless of any risks they are willing to take upon themselves. I will not accept sub-standard care for my child. I do not have endless resources to doctor shop, particularly among those who do not take insurance. Dr. T told us to follow up with him after 10 days of antibiotics. We did, multiple times, without response. His secretary informed me I should get a refill and continue to administer them to my child. She is NOT authorized to do this and if anyone will get him into trouble, it is this person. Unless she, too, is a registered healthcare provider of some sort and I have yet to learn of this fact. In the meantime, I see no one here "lambasting" Dr. T. I'm sure he has all but good intentions as a human being, but that is not what I've paid money for. Someone made a comparison to paying for other services. Again, word of mouth gets around the community about people with good business practices. We learn the good and the bad and have the opportunity to make our own informed decisions before we get our cars repaired, do we not? Why are we not doing the same when it comes to our children's health? I am not here to harm or destroy anyone's reputation. At the same time, I will share what I've experienced with others so perhaps they can make informed decisions as they begin in this journey. This CAN be done in a respectful way. If anyone was like me when this exacerbation hit, I was in a panic and did not know what to ask. My mission was to get help. I would not have thought to ask questions in a PM type of forum. I needed to act and act quickly, and sometimes a quick check of the forum is the best I can do. I have no qualms in sharing my disappointments with anyone directly. But how do I do this when he won't respond to my efforts to communicate?
  13. Im pretty new to the pandas world myself, but it sounds like pandas to me. When things escalate quickly to a "level ten" as I like to call it, and your child just isn't the same, it is likely the case. I'm not sure if this is a new psych you're seeing tomorrow, but our experience with a psychiatrist was awful. They are in the prescribing business. The one we saw had no clue what he was talking about when I asked about pandas, then he blurted out 4-5 DSM IV diagnoses my son could qualify for. And then he mentioned, if I wanted to treat any of those with medications, he would be happy to help. I just don't accept that a previously high functioning child can suddenly qualify for several psychiatric conditions within weeks' time. I empathize with missing your child. I am in the same shoes currently. I felt much better once we got the diagnosis though, you're not left wondering what the heck just happened anymore. There are things to try and/or pursue...antibiotics, steroids, ivig, homeopathy, diet changes and supplementation, etc. First thing I did was give Ibuprofen three times a day. It made him a bit more functional. Is thought to get at the inflammation a bit. But this is certainly not a long term solution. Pandas is unmanageable at first. It hits like a truck. And you're left wondering why your child can't respond to any disciplinary efforts at all. Keep asking questions...
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