Dedee

I am so happy you are getting in early! What a blessing! Hope you find some answers for your daughter. I am so sorry for what she is going through. Sounds really tough, especially for a teenager. Praying for healing for your family. Let us know how things go. Dedee

Your best bet is to stop messing around with trying to convince your doctor and go see a PANDAS specialist. I spent to much valuable energy trying to "convert" non-believers. My experience has been to put that energy into a travel plan and go see someone who knows what they are talking about. There are several great specialist so hopefully you wont have to travel far. Get your antibiotics no matter what you have to do. You know what is best for your child.......You are his Mother......Don't let any Doctor try to convince you otherwise. If your physician doesn't listen to you as the "expert" on your child then you are seeing the wrong physician. Keep up the good fight. It's worth it! Dedee

Oh yes.....I am so interested in hearing how it went. This is the first I have heard about this group. I have recently learned that all 3 of my PANS children have MTHFR mutations and all the mutations are different. One is C677t heterozygous, another is c677t homozygous, and my third is compound heterozygous c677t / A1298. In addition my daughter was just diagnosed with pyroluria and I suspect one of my other children has it also. I just came back from Florida from an appointment there. Dr. M was out of town but we saw the assistant director who is awesome as well. Their recommendation was for us to see a genetic counselor. They were very interested in the results and wanted us to send the results from our entire family and are considering adding MTHFR to their routine blood panel. However, when it came to recommendations for treatment....really nothing more than I already knew. They offered a prescription for Deplin but said she needed to do more research and would call me back. So, what I am getting to with all this is to say that I desperately need an informed experienced provider to guide my treatment for my kids. I realize I would most likely need to travel. So if anyone of you all utilize the services of this group please let me know how it goes. We go see a LLMD in July, so I am hopeful for at least some guidance at that time. Nancy, do you think you will end up making an appointment? PM me if you do and give me some details. Thanks everyone! You guys are awesome! Dedee

We leave tonight to go to Florida to take two of my kids to see Dr. M and also an appointment with an Immunologist there. While we are there we are going to go ahead with another one week CBT "refresher" for my daughter. She did the 3 week program last summer and then we went for a week over spring break. Her therapist there is just awesome! Unfortunately she will be leaving there in August as she is finishing her post graduate work. So we decided to fit in one more week with her before she left. All the therapist there are great, but my daughter has already established a relationship so the work just goes quicker. We just haven't found anyone around our area that comes close to doing as well as the therapist there. I am hopeful we will get some meaningful progress made. On a little different note, we found out this week that my daughter was positive for pyroluria. (Thanks LLM for all your help) We have started (slowly)adding zinc to her MTHFR protocol and will add B-6 later. We have seen lots of positive changes while working with the MTHFR mutation and I think we are starting to see some good things with the zinc. I guess a 13 hour car ride will tell us just how much progress we have made. So I'm looking forward to a week in sunny Florida, even if it will be full of Doctor's appointments. Got so much to do before we leave though. Ugg.. Wish us luck! Hope everyone has a wonderful blessed weekend! Dedee

I have read Dr. Lynch's site and I have found it helpful. From what I can tell, his discussion seems to agree with Yasko and some of the others who have a good grasp of methylation. I am very leary of those who make blanket statements and generalizations. As we all know, so much of this is individualized. Dedee

I have three kids. All have PANS. Oldest is triggered by strep only. The younger two will trigger with any infection but started with chronic myco p. Dedee

That's great! A good CBT program is a huge benefit. We travel to Florida because we haven't been able to find anyone local who really "gets it". We have done the 3 week program then a one week re-fresher, and next week we will go for another one week "update". If we had a good local person it would be great to go only once or twice a month to keep things on track but we have tried several around here and they just aren't as good as those who have practiced at Rothman. You are very fortunate. Please keep us updated. It's great for everyone to know what the options are for this type of treatment. Best of luck. Dedee

I doubt that IVIG would affect test results if you are only testing for the presence of the mutation. It might if you were testing for toxins.

That is a great article. Thanks for sharing. I just found out a few minutes ago that my oldest son has the "combo" mutation. He was positive for one copy of c677t and one copy of A1298C. My other son was positive for two copies of c677t, and myself and my daughter both were positive for one coppy of c677t. So evidently, my husband must cary the A1298c mutation to have given it to my son right? Great, now I have to learn about both mutations! I'm not sure my brain can hold all of that. Having three kids with PANS is hard enough. Now three kids with MTHFR (and all different)mutations. What's next? Dedee

Yes, start the ibuprofen now. You may end up needing steroids to get you through this flare. Would your doctor consider that? Dedee

Just want to say how sorry I am that your family is suffering. This is a horrible time and there is no right or wrong way to get through it. It is so unfortunate that you have no one in your family to support you. I know it may be difficult to find the time but try to get outside or excerise as much as possible to keep your mood up. A nice glass of wine works too. Just remember that you are doing everything right, and you are a wonderful Mother doing a very difficult job. Hang in there! ((((Big Hugs)))) Dedee

I think I understand what LLM is saying. I have two children with MTHFR (waiting for results on the third). I think it is dangerous to just allow ourselves to be guided by physicians who think they understand the mutation and how it should be treated but in reality their understanding is very limited. I have gotten conflicting recommendations on how to treat my kids based on this polymorphism. I actually had one provider tell me to I should start my child on 5mg of methyl-folate immediately. WHAT! Well one part of that is right. They should take methyl folate......The only thing that has been consistant is that each provider is certain that they know how to treat MTHFR. In reality, very few have a TRUE understanding of the extreme complexity of the methylation cycle. If you do find a physician with a true grasp of methylation, then by all means we should value that judgement over our own. However, if the physician doesn't have that expertise, then their judgement is know better (maybe even worse), than a slow and simple approach such as LLM is suggesting. I am certainly no methylation expert. However, I am reading and learning as much as I can every day and trying to take the "do no harm" approach. I have seen positive results with low dose methyl folate and small amounts of B-12. We have an appointment with an LLMD in July and I am hopeful that she will be able to guide us further. We still have far to go. Most everyone here has been to enough doctors in search of help for their children's PANS to know when you are in good hands. It comes back to that comfort level with your provider and your Mommy gut. Just do what feels right in your situation. If your feel your provider has a good grasp of the situation, you are lucky and should go with it. If you get that "hmmm, I'm not so sure" thought while they are explaining things.....back to the drawing board. JMHO. Dedee

Hopeny, Thank you so much for mentioning that. We are going to the doctor soon and I will try to remember to bring that up, especially if we are having more labs drawn. Are you doing anything to treat it? Dedee

Yep, we are another who didn't get any real relief with Zith. Our daughter had some minor improvement then regressed again. When we switched to Biaxin (aka clarithromycin),she started to improve again. She is only at about 70%, so we are still searching for something else. We have changed to both doxycycline and minocycline at different times giving them for about a month each or longer but with no change so we went back to the Biaxin. I am suspicious of Lyme and we see a LLMD the end of July so we will see what happens then. For right now we are just trying to hold out and are treating a recent MTHFR mutation that was found. My vote is to throw out the Zith and go with something else. If you are having gut issues, make sure you are using both Saccharomyces Boulardii and a high dose probiotic. Not sure how much probiotic you are giving but you may try increasing the dose. My daughter is now taking the S. Boulardi and about 70 billion units per day of Gut Pro probiotics. It has taken care of all of her "tummy ache" problems. Dedee

My son also has low IgG and subclass 3. Last year the results came back low and we also found the myco p. The doctor started him on antibiotics and a supplement for his immune system (bovine colostrum). When we tested again about 5 or six months later, all of his immune panel was normal. He stayed on antibiotics for about 7 months and his myco p titers came down to normal so he is now off antibiotics and takes OLE. However, we just had more labs done a couple weeks ago for an appointment coming up in two weeks. Again, his IgG and subclass 3 levels have dropped. I'm not sure if this has anything to do with the fact that we stopped the immune boosting supplement or what. If I were you, I would try to go with what you think is best for your child. If you can't get it from the doctor you are currently seeing then find another even if it means some travel. Personally, I think if he is doing well on antibiotics then I would stick with it. My oldest son (not the one with immune issues), has been on antibiotics for 5 years for PANDAS and Dr. M told me recently to leave well enough alone till he is around 18. Have you tried any supplements to boost immunity? One provider we have seen told us that chronic infection can cause IgG levels to drop. I wasn't a real believer in the immune booster until my son took it. It could have been coincidence but he started a growth spurt shortly after taking it and has grown so much over this school year. I'm thinking of getting some more now since his levels have dropped again. We have an appointment with an Immunologist soon though so I will wait to see what she says. Just stick with your Mommy gut. You know your child better than anyone. Many kids take augmentin for extended periods of time. If he isn't having any stomach issues then just make sure he is taking a good probiotic and find a doctor that agrees with your plan. There are plenty of PANDAS specialist that will support an antibiotic only plan. IVIG is always an option later if you decide you need it. Best of luck. Dedee

Oh, that makes me cry! That is a wonderful story. I am so proud of you for being an awesome Mom to this terrific girl and giving her a life she deserves. You are an inspiration! Dedee

Since I found out that my daughter was positive for the C677t mutation, I had myself and my other children tested. I tested positive for heterozygous C677t same as my daughter but my son was positive for homozygous C677t. Does this mean that my husband could be positive also since my son has two copies of the mutation or could it still just be from me? I initially told my husband that if I was positive that he probably would not need to be tested but in light of my son's results, now I wonder. Thoughts? Dedee

Yep I think you are correct on the spelling. It is "mottling". Spelling was never my best subject. Dedee

Hi Nancy, Not sure if this is the same thing at all, but my daughter has a intermittent look to her skin that is called modeling. Dr. M. says that she see's this alot in kids with autoimmune illness. She said in most cases when you warm the skin it would go away but in the case of autoimmunity, even when warmed, the skin still has the same purplish web look to it. I'm not sure if this is what is going on with your Son but autoimmune issues cause strange reactions sometimes. Keep us informed. Dedee

I only have a minute, but want to say absolutely yes you need longer antibiotics and a different one. Augmentin is a good treatment for strep but he should have a minimum of a month. You need to get an appointment with a PANDAS specialist right away. It may take some time to get in so make your appointment as soon as possible. I wouldn't mess around with doctors who dont understand this illness. They may tell you they can handle it but unless they have treated multible PANDAS kids, I wouldn't count on it. You will loose valuable time. Your first priority at this point is high dose, long term antibiotics and an appointment on the books! Hang around here and you will get lots of great advice. Sorry for what you are going through....you are at the right place. Dedee

Also, please remember that not every PANDAS child will have elevated strep titers. That is why the PANDAS specialist will say that you can't use that as a diagnostic tool. My daughter's strep titers always run just slightly above normal and I have had some doctors tell me that is just normal for her. NOT! This is a hard concept for the average MD to grasp. Dedee

Whew, that should cover it. Can't wait to hear those results.....

What labs did you run and when do you expect them back?

I have a 16 year old son who was diagnosed at the age of 6 with PANDAS. He has been mostly stable since age 11 when he had his tonsils out & went on daily antibiotics. However, occasionally I still see a few tics during times of illness. They are things that only a parent would notice, but still it's a change. As far as his moods, it's hard to tell. He is a very intraverted boy and doesn't like to talk about feelings and so forth. I pretty much have to corner him and ask him straight out. Even then I'm trying to decide if he is telling the truth or not. However, he has been on the A-B honor roll for years and is over all very sweet. But I don't kid myself that he is cured. He still has issues with food and a few other lingering things that lets me know that the old PANDAS bug still hides within. So my answer to your question is yes.....I do think your sons issues are PANDAS related. I would try to get some long term antibiotics going. At least a month long trial. You may want to try something stronger than amoxicillin. He could have other infections causing this flare. Maybe Zithromax or Clindamycin. One of the PANDAS specialist told me once that I should start seeing an end to this in the late teens to early twenties. So I have my eyes set on 20 as my target for hope! I'm going to be one p-off'd Mom if this doesnt come to pass. Good luck with your son - Dedee

Just throwing in my humble opinion here. I strongly agree that this seems like a straight forward case of PANS to me. All the symptoms are by the book. Your daughter is older and so you need to jump on this treatment very aggressively. Do not let anyone talk you out of antibiotics. If you do not get relief after two weeks on the Amoxicillin then you need to insist on something else. It would not be unusual for a PANS child to not respond to that dose of Amoxicillin. Augmentin, or Zithromax are other good choices. If you are only dealing with strep then Augmentin works very well. If you suspect that another infection is involved, you will need to look at something like Zith or Biaxin. Continue to hang around here and learn as much as you can so that when you leave for your trip you will be armed with information. You can make the right choices for your daughter over seas but you need to fully understand what you are dealing with. Also, make sure where ever you are going you will have access to antibiotics and any other medications she may need during your stay. Sorry If I sound bossy....Just offering my suggestions if I were in your situation. Best of luck. Dedee