Dedee

That is close to what my son's labs looked like about 18 months ago. He has horrible allergies / sinus problems. He also was positive for Myco P and has issues with strep. He took antibiotics for about a year and also was on a supplement to boost the immune system. It was some sort of bovine colostrum. After six months his immune panel returned to normal and his myco p titers returned to normal also. He also took a herbal supplement for the myco in addition to his antibiotic. I never could get my daughter to take the myco herbal because it had a strong smell. She is still positive for the myco and on antibiotics. My son still has symptoms even though his titers are normal but we have trouble with strep with him too. He just finished a month long high dose Augmentin run and now only taking OLE until I can get him seen by Dr. M in June. Trying to look on the bright side, the low serum IgG may help you get IVIG if you decide to go that route. Dedee

Well you all know that we have had so much trouble with my 8 yr old daughter who has had PANS since Nov 2010. She has resistant Myco p and has been on antibiotics for over a year. Two HD IVIG's brought some gains but then we had regression again. She was tested a couple of months ago and found to be positive for the MTHFR gene mutation. This isn't extrememly rare, but can still pose some issues with methylation (still learning about that), and absorption of methyl folate and B vitamins. The Integrative Medicine practitioner wanted to see what Dr. M suggested since she ordered the test and so we faxed those results but haven't heard back yet. In the mean time (about a month ago), we started her on methyl folate, and slowly introducing Enhansa. We also did a week "refresher" at Rothman CBT program in March. Things have been going really well for the past few weeks. My husband and I are just holding our breath scared that it's all going to fall apart any day now. Tantrums are down to only about two or three times a week, as opposed to about twice daily. She is much less oppositional. Last night she actually spent 30 minutes playing in the bonus room by herself. Before she would never go up into the bonus room alone. She is dressing herself, and bathing herself which is huge for her. Every few days I notice her doing something new that she hasn't done in a very long time. So I don't know exactly what has caused the change. I have heard really good things about Enhansa. About the anti-inflammatory effects and how it helps with yeast and break down of toxins. So, I guess it could be that. I did notice that she had bad days in the beginning on the days she got it, but that stopped after a few doses. I am giving that very slowly. Right now she only gets it every other day. Eventually we will work up to twice daily. They say in order to avoid those bad days you have to go slowly though. She is getting the methyl folate daily. She complained of headaches off and on for the first week, but never enough to slow her down. I know there are several of you all that deal with the MTHFR issue also. Do you think these supplements could be helping or just maybe coincidental? I have purchased the Niacin and B12 that is suggested for her type of mutation, but again introducting things very slowly so she has only gotten those once this week. We are watching and hoping for more progress to come. She is scheduled to see the Immunologist at USF in June and have another week of CBT in June. Then the end of July we have an appointment with the LLMD. Should be interesting to see how things go as we increase and add the supplements and vitamins. Thank you all for your positive thoughts and prayers. Please keep my middle son in your prayers. He is doing some better, but still struggling with that nagging anxiety and some OCD. Going to start some Enhansa on him this week also. Keeping my fingers crossed...... Dedee

Here is a link to another study on Levofloxin for Mycoplasma. My daughter also has treatment resistant Myco p. We did IV antibiotics for a week in the winter but it wasn't Levofloxin. I could probably get my Integrative Medicine practitioner to try this based on the full article but I'm not sure I want to do 2 weeks of home antibiotics during the summer. Myco P. Article

I know some of the PANDAS docs really push IVIG and believe that it is the answer. For some kids it is. For many kids, long term antibiotics will work wonders. There are great PANDAS doctors out there who will work with you which ever avenue you are comfortable with. Some are just more aggressive than others. So you need to find someone who is more suitable to your expectations. When it comes to this illness, we need all kinds of physicians willing to help in every way so I would never put down any specialist attempting to help our kids. However, if your child isn't quite ready for the aggressive route at this time, there are several very good specialist who are more than willing to work with you. BTW, JMHO - I think if things are going well on the antibiotics, I would try them a little longer and see how it goes. Go with your Mommy gut. It is seldom wrong. Dedee

Probably not what you want to hear.....but you may need to find a PANDAS doctor if you think you are going to need long term antibiotics. With my first PANDAS child my pediatrician would not give me a prescription for ongoing antibiotics and my son could not tolerate being off of them. I found a PANDAS doctor to confirm his diagnosis and send a letter with a treatment plan to our pediatrician which included daily antibiotics. Haven't had trouble since. That was about seven years ago. Unfortunately, we have to travel, but it's worth it to get things stabilized. Don't back down. If you know this is what your child needs, find a doctor who knows this disease best. They understand the "antibiotic addiction". It won't last forever, but right now it's what he needs. Best of luck. Dedee

For those of you who are using the 3,000 mg per day dosing, where are you getting your supplement? The highest amount I can find is 900mg. Are you just giving multible capsules? I can only get my daughter to take a few things at a time or she starts choking, so I have to get it as concentrated as possible. If I try to sneak it in a drink or food, she knows. Can't get anything past her that way. Dedee

Thank you for sharing your experience. My daughter also has resistant Myco p. Her physician had her take Minocycline for a few months and was really hopeful that it would help. She said it crosses the blood brain barrier and so usually helps with neuro symptoms. We didn't actually get that much help but we were fighting strep also, so we ended up with Biaxin which covers both. I am so glad you are getting relief. I know how draining the constant battle can be. Best of luck. Dedee

Love it! My whole family takes NAC and my daughter has gotten it IV with something my Integrative Medicine Practitioner calls an "antioxidant bag". When she has an IV in for any other reason (steriods, antibiotics, etc), we give her a bag. Seems to help, but she always has gotten something else with it so hard to know which is helping.

LOL.....I crashed a conference a few weeks ago while attending another conference at the same hotel. It was the Anxiety Disorders Association of America (ADAA) and they were talking about anxiety in children so I just went in like I belonged there. Didn't go so well for me though cause it nearly made me sick when every child they described sounded like a PANS case to me. I got brave enough to ask the lecturer if the kids in the studies she refereed to had been screened for PANS prior to entering the study. She was a bit indignant, and said "of course they were screened for abrupt onset." When I asked if they were screened medically, she skipped the question and went on to other questions. So basically, I came out of there depressed and feeling like there are hundreds & hundreds of kids out there who need help but are only getting psych drugs and a bipolar diagnosis. I would love to crash the Boston conference with you but unfortunately it doesn't look like I'm going to be in that area. Shucks... I say go for it! Also, I wish I lived close enough to have dinner with you guys. I really enjoy spending time with other PANS parents. Just don't get the opportunity very often. Have fun! Dedee

ROFLMAO.......Sorry can't help but laugh. Just like a man, right? Sounds just like something my husband would do. Hope you get your husband taken care of, but thanks for sharing and giving me a laugh. Dedee

I agree with LLM. We have almost the entire series of "What to do when...." books. They were recommended by our CBT therapist and my daughter loves them. We have...... "What to do when your brain gets stuck", "What to do when you dread your bed", "What to do when your temper flares", & "What to do when you worry to much". I got them all from Amazon. We read from one of them every night. Dedee

Patric, You are right, this is a great board and I would be lost without all of you. Thank you for your participation. I have been here off and on since my first son was diagnosed nearly ten years ago. Wow, we have come so far. My family would not be where they are if not for the information and support I have gotten here. Cyber board hugs to all {{{{{{ }}}}}} Dedee

I understand how confusing all the information can be. It's just a lot to take in over all. However, if we had discussed only strep when this was strictly a PANDAS board, I never would have picked up that my daughter could have been activated by Myco P instead of strep (Hence PANS). So I do / have learned so much from posts that discuss alternate theories. PANS is an infection triggered neuropsychiatric issue. Many infections (bacterial & viral), are causing these kids problems. I don't see anyone here pushing their opinions off on others. Most just respond with their personal experiences in hopes that it may help another family. It may or may not be applicable to the reader. For me, my brain can only absorb so much information. So if I am reading a thread that seems really complicated and it clearly has no bearing on my situation (so I would have nothing to offer), I try to stay off of it. I can't crowd my small mind with information I can't handle at that time. It doesn't mean that thread won't be the answer for someone else. This is a horrible illness.....it's going to take many minds to figure this out. Who better than those who love these kids the most. JMHO - Dedee

Nicklemama, Glad to hear that you have gotten some answers and hopefully you will see some results. We recently found out that our daughter is MTHFR positive (for mutation) and have started her on Methylfolate. Our Integrative Medicine practitioner wanted to only start with the Methylfolate (which we did a few weeks ago), and now start Enhansa. The Enhansa is supposed to be a potent anti-inflammatory but also help break down and excrete toxins that sometimes build up in those with MTHFR mutation (including yeast). We are going very slow with that also. So far we have had good results. The only issue we have had so far is some diarrhea and a couple of headaches. My daughter seems to be showing gradual improvement. Although I am a little worried about the previous post regarding a "honeymoon period". Hope we aren't going to just regress again later. I am trying not to get my hopes up. Seems so many times I think we have found the answer only to fall back again. I have ordered Niacin and B-12 but it would be some time before starting those. We will probably wait another couple weeks to see if we get any reaction from the Enhansa first. I know it's too early to tell, so my husband and I have barely even spoken of it, but the last week or two have been pretty good. We are holding our breath and just praying and giving thanks for each day of peace we get. I really want to know how things turn how for your son. Please keep me updated on your progress. Thanks so much for sharing. Dedee

Thank you all so much for your replies. Can you tell me what the symptoms were that some of your children experienced? My daughter has mostly defiance, rages, extreme emotional lability, OCD, & minor tics. Lately she has had complaints of headaches and she has complained of stomach aches since I can remember. Of course there are other things, but these are the things that stand out the most. Again, thank you all for your replies. Your response means more than you know. Dedee

My 8 year old daughter has been struggling with PANS since Nov 2010 after receiving the flu mist. She was positive for Myco p. and has been on antibiotics since that time. Last myco titers were still elevated a few weeks ago (both IgG & IgM). She has had 2 HD IVIG's and even one week of IV antibiotics as well as the constant oral antibiotics. She has slightly elevated strep titers and she is currently on biaxin 250mg twice daily which should cover both the strep and myco p. She is also on Lamictal 50mg twice daily. We recently found out that she is MTHFR positive (for mutation) but her histamine levels are normal. I finally made the decision to just go ahead and pay the money for a full Lyme and co-infection panel. I felt it would be worth the money to have a definate answer one way or the other. Hmmm, no way it could be that easy right? So the entire co-infection panel was negative. Nothing to argue there. But the Lyme western blot was a little boarderline I think. Please tell me what you think. On the IgG side, all bands were negative except for a +41. On the IgM side there was a 18+, 39 Ind, 41++, & 83-93 Ind. I realize the IgG looks very normal, but what about the IgM? The doctor who did the testing is not an LLMD but agreed to do the testing to appease me. I do have an appointment to see an LLMD but not until the end of July. We will be seeing an Immunology group in Florida in June but I doubt they will read it as anything but negative. Please tell me if you think I should keep the appointment with the LLMD in July or just stick to the current Myco p treatment and hope for improvement. I think they are planning on doing allergy testing when we go to the immunologist in June and we will hopefully get more guidance on the whole MTHFR piece. I would greatly appreciate any opinions on these results. (Going to post on the Lyme board also). Thanks so much! Dedee

My 8 year old daughter has been struggling with PANS since Nov 2010 after receiving the flu mist. She was positive for Myco p. and has been on antibiotics since that time. Last myco titers were still elevated a few weeks ago (both IgG & IgM). She has had 2 HD IVIG's and even one week of IV antibiotics as well as the constant oral antibiotics. She has slightly elevated strep titers and she is currently on biaxin 250mg twice daily which should cover both the strep and myco p. She is also on Lamictal 50mg twice daily. We recently found out that she is MTHFR positive (for mutation) but her histamine levels are normal. I finally made the decision to just go ahead and pay the money for a full Lyme and co-infection panel. I felt it would be worth the money to have a definate answer one way or the other. Hmmm, no way it could be that easy right? So the entire co-infection panel was negative. Nothing to argue there. But the Lyme western blot was a little boarderline I think. Please tell me what you think. On the IgG side, all bands were negative except for a +41. On the IgM side there was a 18+, 39 Ind, 41++, & 83-93 Ind. I realize the IgG looks very normal, but what about the IgM? The doctor who did the testing is not an LLMD but agreed to do the testing to appease me. I do have an appointment to see an LLMD but not until the end of July. We will be seeing an Immunology group in Florida in June but I doubt they will read it as anything but negative. Please tell me if you think I should keep the appointment with the LLMD in July or just stick to the current Myco p treatment and hope for improvement. I think they are planning on doing allergy testing when we go to the immunologist in June and we will hopefully get more guidance on the whole MTHFR piece. I would greatly appreciate any opinions on these results. Thanks so much! Dedee

If it really is classic OCD (and I suspect you would certainly know) then he will absolutely be helped by The Rothman Center's program. Sounds like you are really on top of things. That's awesome. Keep up the good work! Dedee

Same for us. My daughter is 60 lbs and takes Biaxin 250 mg twice daily. She used zithromax for a while and we did not have any major changes. Also have tried Minocycline, but the Biaxin works best for her by far. Still, been on antibiotics for over a year and still positive titers. Yuck. She also takes high dose probiotics and nystatin. Dedee

I'm sure by now you have gotten several good replies. I can only give you my opinion based on my experience. My daughter has a different presentation than your son, although she does have violent rages and I have wondered about Lyme. I finally had her tested last week and we are waiting for results. Anyway, The behavior clinic and the clinic for Dr. Murphy are seperate as far as scheduling. They are together in the same office but you must schedule them seperately. Dr. Murphy is very good at diagnosis and labs, but if you need help with Lyme treatment my suggestion is to get with an LLMD. You should call now and get an appointment with Dr. Storch for an evaluation for your son. At the same time ask for an appointment with Dr. Murphy. Explain you are coming from far away and they will work to coordinate them. I think you will get help from Dr. Storch's program if you are willing to do what they tell you. If your son is definitely positive for lyme I think you should be aggresively treating that as well. The CBT program they have has been extremely helpful for us. However, we do see regression with strep exposures etc.. and we are still fighting myco p. We have to work very hard at maintaining what we started at Rothman while at home. It's easy to slip back into old patterns. It's a daily struggle....just like everything else with this illness. It sounds like your family is really suffering. If it were me, I would go and talk with Dr. Storch. See what he has to say and follow his advice. He is extremely nice and knows his stuff. Best of luck to your family. Dedee

How awesome! I am so very proud of you! I know this is an exciting time and you have worked very hard to get where you are. I'm sure I speak for many of the Mother's here when I say that we feel such pride when ever we hear stories of PANDAS kids fighting back and making it through. We know your past struggles and feel your pain and we are so very happy that you are in a good place now! Thanks for sharing! Don't stop - Dedee

The others are correct, positive IGM indicates a current infection and IgG indicates a recent infection. My daughter has been fighting myco p since Nov of 2010 and we just retested her and she is still positive for both IgG and IgM. She has had oral antibiotics and even a weeks worth of IV antibiotics. Myco is truly a stealth pathogen which can hide out and be difficult to treat. I would be very aggressive in treatment and realize that it may take some time, but you will see improvement in PANS symptoms. Myco p can be just as much a cause of PANS as strep. Some physicians will understand how to treat it and others won't. Make sure your doctor is knowledgable in that area. Best of luck. Dedee

We have seen Dr. M for two of our children (soon to be three). She made the recommendation for IVIG for our daughter but we did the actual IVIG local. She sent the letter of recommendation to the insurance company and to the pediatrician & Integrative Medicine Practitioner. I don't know if they actually do it there or not. Dr. M. usually likes to start out with antibiotics then if you get no relief, she will move to IVIG if you ask about it. She is very thorough, very methodical and caring, but tends to be a bit conservative so I doubt you would get right on the IVIG wagon the first visit. Don't get me wrong, we love Dr. M and she has been wonderful for our kids. Just saying if you are looking for the type of doctor that will jump right on IVIG your first visit(and I can understand that), you may try one of the other specialist. It's really great for PANS parents to have different types of specialist that we can go to, once we have educated ourselves, to help us along the path we have chosen. Best of luck. Dedee

I just got back labs that show my daughter is positive for MTHFR C677T Heterozygous mutation. From what I have read, this isn't the worst sort of mutation. My confusion is that most of the literature says that this type is usually related to high Homocysteine levels but my daughter's levels were normal when we tested them back in December (it was 5.7). I have had her on NAC for quite a while and just started the MTHFR-5 from Thorne. I'm not sure what this means in relation to her PANS if her homocystine levels are not elevated. Can someone educate me please? Dedee