Dedee

I have a family member with a MTHFR positive child that will only use the chewable vitamins. The powder that we have tried from Klair has a bad taste and she will not drink anything we put it in. I can't find any other vitamins with the methylated form of B vitamins and methylfolate. Does anyone else use a specific vitamin that is chewable that meets these criteria? TIA.... Dedee

We are using it. Going into our third month. I have seen definate gains. My daughter has seemed more calm. We have had less defiance. There was a time that she got worse and we had to decrease the amount we were giving but then things leveled out and we got the calm back. She has had a terrible respiratory virus this month that has caused some set backs so it's hard to tell where we are right now. Still, over all I think it has helped more than any supplement we have ever used. Also, not sure if this has anything to do with it but she and my son both have had a huge growth spurt. Growing like crazy..... Just my experience thus far. Dedee

There has been intermittent discussion within the PANS community about adult onset PANDAS / PANS. Most of the specialist admit that this does exist although it "usually" occurs during childhood. So I think it is very likely you contracted PANS during that time. The question would only be what triggered it and how can you recover. It's a shame that you have suffered for so many years. I would start with Dr. T or with an LLMD to begin the journey of tracking down the infection. Since you had a "cold", it could easily have been Myco p which can hang around for years. An LLMD would be a great place to start for treating Myco. I wouldn't just accept this without a fight. Make an appointment and at least look into it. Best of luck. Dedee

Thank you all so much for your responses and suggestions. We obviously all share similiar challenges. Things seem to be a little worse the last week for some reason. I will get the book you all suggested and maybe I can get some good ideas from that. Thank you all so much! Dedee

My daughter has always had numerous complaints that everything hurts. Shoes can't be too tight, tags have to come out of all cloths, socks make her crazy, she can't wear blue jeans, brushing her hair causes major melt downs, the list goes on. I know many of you can relate to these issues. She also has a very low pain tolerance. Any small injury causes major crying. So my question is, has anyone found any sort of therapy of any method to help with these extreme sensitivities? I am so tired of fighting every morning just to get her hair brushed. It's crazy. Dedee

I know it seems like Dec 10th is a long time. But just hang in there. You will be in good hands and I am sure she will get this under control. Great that you made that appointment! Keep us updated. Would love to hear how your appointment goes. Dedee

45 days is not usually long enough to treat Myco p. If you do some research you will see that it takes many months, sometime up to a year to get rid of Myco p. An LLMD is sometimes the best person to help get rid of Myco p. I would either get an appointment with an LLMD or insist on more titers to see where you are with the Myco p. If the IgM titers are not in the normal range, you need to be looking at switching to a different antibiotic or being more aggressive with the one you are currently giving. Dedee

This is just my opinion.....If he has had pneumonia, it was most like Myco p. because this is the most commonly community acquired pneumonia. He very well may be triggered by a virus, or strep, but he may also have an under lying myco p infection. Augmentin does not treat myco p which would explain why he is not getting better. He would need either Zithromax or preferably Biaxin. You should have IgG and IgM Myco p titers ran to see where things stand or you could just see if your physician will switch to Biaxin. As always, my best advice is to make an appointment with one of the top PANS specialist. This is the best way to get to the bottom of things. Best of luck. Dedee

If you are dealing with Myco p. it would not be unusual for the Zith to stop working after a period of time. It helped my daughter slightly for maybe a week or so but that was it. We then switched her to Biaxin and then we started to see much better results. Myco p is a stealth pathogen and can not be treated for only a few weeks. It takes many months to eradicate Myco p. Sometimes even a year or more depending on how long the patient has had it. There is a lot of great reading if you just google it. Hope you see better results soon. Dedee

It is not unusual for a child to do well at school and then fall apart at home. My daughter is an excellent student and then she would come home and rage all evening. I did not see in you list of lab results anything about Myco p. testing. This would be high on my list of testing especially if you are having issues with explosive behavior or rages which is what I think you are describing. Even though Zithromax should treat Myco p, my daughter did not really get better until she was started on Biaxin, that was when we started seeing the most improvement. I believe you need a more thorough work up. I'm not sure who your doctor is, but I would suggest one of the PANS specialist. Your kids do sound like they fit into the PANS category, but I would most definitely make an immediate appointment with one of the top specialist as soon as possible. Best of luck. Dedee

I would call the NIMH and see if you qualify for their study. Call right away! Sorry have to run. Dedee

If he is on only Augmentin, the problem may not be that antibiotics aren't helping, but that he needs another antibiotic in combination to give the extra boost. My daughter was on a single antibiotic for over a year and when we added another to the mix she had an immediate huge herx reaction. We had to back off a bit and then introduce the second antibiotic slowly. Now she is on full dose of both and doing much better. I would definitely see an LLMD. I imagine you will get some good advice there. Dedee

I don't know any official stance on it but I did give it to my PANS children once when they were exposed and did not see any adverse reaction. How terrible for you to have two with the flu at the same time. Best of luck and praying for rapid healing. Dedee

I'm not exactly sure what you mean by the anger being like a tic. My daughter has intermittent anger episodes that you would never be able to predict. This is not what I would call a tic. In our situation, it is another symptom of her PANS. She was (sometimes still is) very explosive with rages. Never knew what would set her off. One day something might not bother her at all and the next day it would cause her to explode. This is a symptom of PANS. This has gotten much better since she has been treated for her Myco p (and lyme) for over a year now. Also she has had one IVIG and treating methylation as well. If antibiotics have worked before, I suspect they would work again. You need to have testing done for your son to see what underlying infection may be lurking. Biaxin and Zithromax are both good for treating both strep and myco p. It's always best to know exactly what you are dealing with though. I know very little about how much testing Dr. K does for infection. Regardless of where you go, you need to request testing for strep titers and myco p titers at a minimum. Dedee

I am so sorry for what you are going through. I can tell you are in pain for your son and that is a horrible feeling. It is great that your son does so well with a "clean diet". That is very important for PANS children. You say that you feel like he is "just tourette's". But you also say that you feel like you are having a breakdown (I can certainly relate). This tells me that he must be doing something other than having tics??? You mentioned mood changes. Are there other things? I am all for "natural" therapies and a holistic approach. Many on this board have found help that way. For us, we have used a combination of traditional medicine (antibiotics), herbal therapies, and psycotherapy (CBT/ERP). It has been the combination of antibiotics, IVIG, treating methylation, and the use of supplements that has gotten us back on track. We still aren't 100%, but definately feel we are on our way. Everyone has to do what they feel is right for their family. You didn't mention why you believe your son has PANS. Just remember that PANS is an infection based neurologic disorder and most children respond well to an extended dose of antibiotics. It sounds as if you have tried everything except antibiotics. PANS kids will require more than just the average 10 days. A one month trial is average. Antibiotics is the usual treatment for PANS. If you are at your wits end (and it sounds like you are), you might consider giving it a try. Best of luck - Dedee

I am so sorry for what your family is going through, but I am glad that you are part of our group. The one year mark is always a significant time. I was so disappointed one year after our onset because I thought we should be so much better than we were. We are at the two year anniversary now, and I think we are finally on our way. Hope this year brings you healing and hope. Dedee

Isn't it sad that we have to "doctor shop" for a physician who is educated on the most recent research that affects our children. Don't you find it odd that those who are up to date on the information aren't the ones using this term? I believe it is retaliatory terminology used by physicians trying to cover their own ignorance. Dedee

Thanks for the reminder. I was going to make some FB posts. It's a good opportunity to raise awareness. Dedee

So after reading everything, I really think my daughter may have this. I'm looking for someplace to get her evaluated. Did you all say that insurance doesn't pay? Is it better for them to just get glasses or does the therapy really work? Probably just like everything else in PANDAS, have to try it to know. Uggg.....one more thing. LLM.....leave no stone unturned girl! Dedee

Well dang...really, another contraversial thing? I have taken my daughter to the eye doctor 3 times in the last two years because she insists she can't see. Eye doctor insists she can see just fine. I thought she just wanted glasses like her brother. Sometimes she grabs my reading glasses and wears them saying it's easier to read with them. What the heck? Dedee

Oh yes, this is a classic PANDAS / PANS symptom. My sons both have it when they flair. We went to the urologist before we put that together. When the flair goes away so does the frequent urination. Dedee

Well, since this isn't the Easter Bunny we're talking about, what he "believes" isn't relevant. This is about an illness that has been documented by studies and research. There are plenty of papers you can take to him to back that up. I would tell him that you aren't interested in his beliefs. You are interested in facts backed up by research. See ya..... Find another doctor.....You need a specialist. Dedee

You said you have tried numerous antibiotics, is he still on antibiotics? What is the longest amount of time he was on antibiotics? IMHO, he needs a long run of antibiotics, several months, maybe even up to a year. Also, he needs to be tested for myco p. When my daughter didn't recover from being treated just for her strep symptoms it was because she had an active myco p infection. She had horrible rages also. Sometimes a different antibiotic is needed for that. You said you are setting up IVIG with Dr. K, have you seen any other PANDAS / PANS specialist? IVIG can be very helpful, but usually you get the best results if the underlying infection is cleared. I would want to make sure there wasn't something else going on first. Finally, you can try some ibuprofen to help with inflammation. Give it 2-3 times per day and you may see some benefits. You need to give a pretty high dose, but because of that you can't give it for an extended period of time. Most say about a week but I was desperate and did a two week run before tappering off this last time. You need a PANDAS / PANS specialist ASAP. Best of luck. Dedee

I agree.....What a nightmare for this poor family. Tell me who / where to send a letter or e-mail. Give me an address to the hospital or CEO. I'm ready and willing! Dedee

We have been on it for two weeks now. What I have experienced is that our morning routine is much smoother. No more morning meltdowns over going to school or taking medicine. She has been very cooperative in the mornings. Evenings have been about the same. When my daughter is tired she doesn't do as well. More moody and irritable with potential to meltdown over small things. I'm giving credit to the CM, but I guess you never know for sure. One other thing to mention is that she has started have frequent tics again. She hasn't had tics in a while. Its a sniffing / blowing tic and it is very frequent. Again, it's hard to know if this is related in any way to the CM or if it would have happened anyway. It started about a week ago. I think we will stick with it and see where things go. We are supposed to be increasing her antibiotics for Lyme treatment soon and I don't like changing too many things at once. Not sure if I should do that right after starting the CM or if I should wait a little longer. Pondering that one.... Dedee