_Misty_

double post

Glad to see this update! We are in the middle of determining if too much 5 MTHF caused my daughter's current flare. She was on 5mg, too. She has been totally off of it a week and we haven't seen any improvement - actually, she seems to be slowly getting worse. We've done 2 doses of niacin last week. Now I'm thinking of doing another niacin dose. I've ordered a lower dose (400mcg) to start her on as soon as it gets here. How quickly could you see improvement after lowering her dose? I'm really hoping that's our problem.

Thanks for asking about that for me! I'm not on Facebook...may end up joining but haven't yet. I read the different names of methylfolate on Lynch's site...yikes! So many. The doc did do a lot of labs at the same time, and everything else was normal, other than mildly elevated Anti-DNase B. She is maybe mildly improved, but I'm anxious for her to get much better. Her hands are so raw from washing. She is too distracted to do her school work (homeschool). Bedtime went a little better tonight. Started motrin today - I had forgotten about that for flares. Hoping to see a good bit of improvement in a few days.

I can't get her to take a nap anymore even when she needs it. She's had 2 or 3 nights with insomnia and she still won't take a nap. I'm so thankful it's not as horrible as last time, but I'm really curious how long this will last. I had forgotten about motrin! Started that today.

My dd7 has PANDAS/PITAND (can't pin down the trigger). Her initial episode was May 2012. Amoxicillin kicked its butt and over a few months she returned to essentially 100%. We also added inositol, fish oil, magnesium and probiotics, but the antibiotic really seems to be what helped. Her first big flare is going on now and has been for about a week and a half. We've had little bumps here and there, but this is the first time it's hanging on. I don't really know what to expect. I know it's different for every child, but what is common for a flare? Her first episode was really intense for a few weeks. This time she is still able to function, but it is certainly lowering her quality of life. She has times during the day (mainly mornings) when she is great, then evenings are much worse. (I have another thread about MTHF supplements, which I suspect may have brought this on, but if not, I'm looking for info on flares). Are secondary episodes usually milder and shorter, or not? Thanks for any help! I had really put this in the back of my mind because she was doing so, so well.

I don't know a whole lot about MTHFR...I've read quite a bit, but haven't fully understood everything. My understanding is that if you have either type you can't process folate, so you automatically need the bioavailable type. I tried to research it some more today, but had little time to devote to it. I did see on Dr. Lynch's site a recommendation for it for 1298 forms - especially if you're homozygous, with the note that there isn't a one size fits all approach. As far as the antibiotic goes, she was doing great on the dose she was lowered to back in the fall...I don't know if her body has adjusted to the higher dose, or she's fighting something off right now or what. In hindsight, I wish we hadn't made so many changes at once. The thinking was that when she had improved methylation she wouldn't need as much antibiotic and maybe would eventually be able to stop taking it. Now I don't have any idea. I've also stopped the methyl b12 and the 5-HTP...she is now back to exactly what she was taking a few weeks ago when she was doing great, except she is also getting some niacin. Should I keep doing the niacin every day until she has improved? I'm afraid I'll over do it. I'm also confused about the difference in 5-MTHF and methylfolate, if there is a difference. I don't know if they're the same and if the dosing is comparable. All the different names are really confusing. where do you get the liquid kind?

My 7yo dd developed PANDAS/PITAND...not sure what triggered it...last May. Her initial episode was very severe, but responded to amoxicillin after 36 hours (once we tried amoxicillin!). She improved over the next couple of months until she was almost at 100% and stayed that way until a week ago. Her OCD symptoms and possibly a tic are back. It's not as severe as before, but it is bothering her very much. We found out she has MTHFR - homozygous A1298C. Her doctor started her on b12 and 5mg of MTHF about 4 weeks ago. At that time, we also lowered her antibiotic dose. I suspect that her body is shocked at the high dose of MTHF and she is over-methylated. My other thought is that she isn't tolerating the lower dose of antibiotic. I contacted her doctor to see if that could be the problem and he won't talk to me about it without doing a phone consult for $150. (I don't feel this is ethical, he messed with her treatment plan 4 wks ago and sold us $80 in supplements and she has had a poor response. I think he is responsible for advising us without additional charges. I refused the consult, so I'm on my own trying to figure out what to do.) Anywhoo... We put her back on her old antibiotic dose Friday night and we left off the MTHF yesterday and finally talked her into taking some Niacin tonight. She did seem to get a little better with the higher antibiotc dose, but after a few days there was no more improvement. She seems a little less anxious today after not having the MTHF yesterday. We'll have to see tomorrow if she is continuing to improve after having the niacin. Does anyone know/think I'm on the right track? If this seems to work, I'm thinking I'll order some 1mg MTHF and try the lower dose. I'm so lost and frustrated. She was doing so well before.

hugs2day- 9 months is a long time to deal with it being so bad! My daughter's food issues only lasted a week or two that were severe, then it was more specific foods and not eating anything outside our home. I know your heart could have burst when he started recovering! We had a similar experience with our daughter...the first day that she improved she said "I think OCD is starting to leave me alone!" There is no way to describe how that feels as a parent. Her OCD had been constant and completely consumed her prior to that. We are giving her magnesium, but not vit D...I'll check into how much she gets from her multivitamin. She drinks milk pretty well, too. Did both your sons have their onset at the same time? bulldog24- thanks for the link. I'll look into that and discuss with my husband. I think I saw it a few weeks ago and completely forgot about it.

DeterminedMom- I'm in Alabama. I haven't looked into Dr. B...I need to see if that would be feasible for us travel wise and insurance wise. nickelmama-I've read about strep proof not being necessary, but getting doctors who are already somewhat skeptical to realize that your child still has PANDAS/PANS even without obvious strep is hard. Interestingly, dd had a positive strep swab in February, but the culture didn't grow strep. She had lots of pus in her throat at that time. The ped we saw while ours was on vacation said the culture can have a false negative 10% of the time. We had just come home from Disney World and I'm sure there strep there in February! Kiera- My prob with Dr. K isn't the phone consult fee, it was wanting to do such an expensive procedure without even extensively talking to us or reviewing dd's records. I am all for it if dd worsens, but the way he just went straight to that, and he didn't say it "might" be necessary just rubbed me the wrong way. I am thankful he is there, for sure! We may be off to see him at some point. It might just be the way he communicates and could be a difference in North/South culture. Sosudden- Wow! Your daughter has been through he!!. So glad the IVIG worked so well! Hope the tonsillectomy was just what she needed. I am thankful that we found out about PANDAS so quickly after my daughter's onset (10 days or so). I can identify with how you describe your daughter before this hit...just like mine. So smart and fearless before this. I told people as we were going through the initial horror that it was like we were grieving a death because she wasn't the same child. There was no enjoyment of life for her, no childhood going on for those weeks. It was all horrible anxiety and OCD. hugs2day- I am so hoping the antibiotics are going to put my daughter into remission. She has 15 more days of them. How long did it take for your child to go into remission? I agree about leaving the options open. We know that this road is uncertain.

Kiera- What is an ID doctor? Minimaxwell- I've contacted 2 immunologists and neither were familar with PANDAS. I should probably keep pursuing someone, but got pretty discouraged after contacting those. One of them suggested I try the immunology dept at University of AL at Birmingham. I emailed Dr. Kovacevic and he just said she needs IVIG. I would like to find out if there are any underlying things going on (Mycoplasma, Lyme, etc) before going that route. Also, we're less than 2 months into this. I don't want to do that unless it is absolutely necessary. Dr. K. really made me feel like he is just in it for the money by immediately suggesting that. He may be great, but I did not get a good feeling from his email. He suggested a phone consult, which we may do. What would that really accomplish? I'm guessing he can't order any labs from a phone consult. He is the closest to us at 10 hours away (by car). Dr. Murphy is 11 or 12 hours. There is a doctor that is about a 2 hour drive that we could try. He is family practice, I believe, but specializes in autism and I think is listed on a PANDAS list somewhere. I am thankful, at least that the rheumatology appointment is this month. It's on the 31st, so we won't waste a lot of time waiting to see if they will be believers. It is the rheumatology group at Children's Hospital at Vanderbilt, if anyone is familiar with them.

My daughter suddenly developed OCD and many, many PANDAS symptoms in May. We haven't had much luck (although some!) in anyone believing that's what she has. Her pediatrician is hesitant, but did do ASO titer and Anti-DNase b and swabbed the whole family. All that was negative. He referred us to a therapist and put her on Keflex. She got worse while he was on vacation and we saw a different pediatrician who was more supportive and referred us to a pediatric neurologist and changed her antibiotic to amoxicillin. She dramatically improved in 36 hours and has now been on that for a few weeks and is at 80-85%. (We also added Inositol and magnesium on Saturday). She still has occasional obsessive thoughts and separation anxiety, particulary at bedtime. We saw the pediatric neurologist who said she believes in PANDAS, but doesn't really think my daughter has it because we can't track down any strep. She ordered an MRI and checked her thyroid and ANA screen w/ reflex and Mycoplasma level. Thyroid and MRI are normal, ANA screen was positive and Mycoplasma hasn't come back yet. She is referring us to a rheumatologist because of the positive ANA screen. What should I expect? Will a rheumatologist likely be helpful? I hope we can at least get a bunch of tests run and hopefully find out some more info. We were almost certain this is PANDAS anyway, but I'm guessing the positive ANA is just another step in that direction, right? I'm on pins and needles wondering from day to day how her behavior and symptoms will be. It was severe for about 4 weeks.