otksmama

You are right, pr40. There is something going on with him. He does need help, but does not want it.

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?

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?

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?

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.?

Big mighty can you say more about the social cognition improvements you saw after treating methylation issues?

What makes dr k say that this is less likely PANS?

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?

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?

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?

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.

Were changes immediate?

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!

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?

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...

Agree with receptionist comments. Just awful. However staffing issues did not seem to be a problem at all in terms of getting a response from the doctor when we had scheduled (read PAID) appointments. So I guess providing follow up care is not a part of the standard of care you've paid nearly $1000 for for the first two visits! We were dropped after 10 days of abx, to which there was no significant response. We were left with nowhere to turn for next step.

I'm very disappointed too.

I've tried emailing and calling multiple times over last month and a half without reply.

Have to respond in strong agreement. Ive just made an appointment for a consult with a dietician. have talked with terry wahls, asking if she could include a pediatric pt in her current trial dont think we could do the organ meet she proposes, haha. Can you believe when I asked dr k about diet and supplementation he responded "none of this will make any difference." I'm speechless.

Yes my oldest has pandas. He's had strep...but never been diagnosed or treated for it. Just want to make sue this doesn't happen with our other son!!

I am very interested in this too, joybop and qannie. I am already worried about my baby who isn't one year old yet, wondering what the best thing to do will be when he gets his first strep. Or what if it can't be diagnosed...do we push for a round of abx just in case.

Tonight we try sleeping bag on our bedroom floor! Tried it once befor but he still crawled up into our bed

My six yr old has major sleep regression. Refuses to stay in bed all night, begs to sleep on our bed. This has been going on for the entire flare...almost 6 months. With him waking multiple times plus my infant waking to nurse I'm beyond sleep deprived and officially insane. I tried devising a token-reward system where he can earn a token for falling asleep by himself (also a problem), one for staying in bed all night, and one for staying in bed until 7. His rewards are watching movies, ice cream, video games, etc--things which I would assume are highly motivating for him. Not working. He even says I know what you're trying to do and I'm not going to do it! I want to be sensitive to the fact he may have intense fear, but this pattern isn't good for him or the rest of our family. I want to encourage him so he will develop confidence that he's safe in his bed. Is this the wrong time for a behavior-mod plan? Any tips or advice? When the flare is over do children tend to naturally move back to age appropriate behaviors?

Qannie What worries me most is the long term abx required after ivig. As dr k said, flares can be induced by anything, as in other autoimmune conditions. So even though an abx might prevent strep flares post ivig, what happens with the first major viral illness he has? Plus what about the disruption of gut environment for that long? Ivig is definitely not out on the list of options though for us. It sounds like so far so good for you. Have you heard other success stories--kids getting one ivig, being on abx for a year or two, and that's it? Dr k makes it sound like most cases are actually that way. What do you think? You've referenced many reports on it...would you mind sending those links to me? Thx!

Qannie...interesting. I don't know what number episode this would be. It's his first big, obvious, debilitating one. But looking back, I'm certain he had his first at 20 months and has had a few since. None which were ever treated. He was sick 6-7 days in march, again no treatment. Flaring ever since. I asked dr k what it means if he didn't respond to abx. He just said we'd need to consider ivig. We are day 7 today post steroid burst. I'm so anxious about everything that I sent my first week of observations to him today and he just said I want TWO weeks. Haha