Dedee

You're asking for opinions right? If it were me, I would do it. This is my opinion based on the information I have gathered from others who have been through the study and from discussions I have had from other specialists when my daughter first got sick. We tried to get my daughter in the study but she was turned down. My concern would be exactly what you are saying as well. I would worry about having to have the spinal tap. But I have heard from others that they are so experienced there that this is not as traumatic as we (parents) expect it to be. I believe it's much harder for the parent than the child. As for the SSRI, (again, JMHO), I would rather hold off on that if you have the opportunity for the IVIG. You will have access to valuable information and access top notch specialist that you would not otherwise be able to in other situations. These are the things that I would consider if I were in your shoes. I know it is a very difficult decision to make. You want to do what is right for your child and in the end your will. Either way you go, you know your child best and you will make the right decision. Just trust your instincts, make your decision and don't look back. Best of luck. Dedee

Not trying to throw a wrench into what you have figured out. But I would question a diagnosis of non-PANDAS tics in a family where there is a case of PANDAS, Sydenhams chorea, ADHD, autistic traits, and many other things you have listed that are running in your family but you seem to insist are Non-PANDAS related. Just because it wasn't this generation doesn't mean it wasn't infection induced. Many of these things you are describing in your children and your family members sound like PANS issues to me. I have no doubt that there are physicians who have told your family that this is genetic and has nothing to do with illness. But please remember that most physicians would never think to coorelate ADHD or tics with infection. My pediatrician told us for years that my daughter was simply strong willed. It was never even suggested that she might be OCD. After all she didn't wash her hands over and over. And you beter believe no one EVER told me that all those episodes of pneumonia had ANYTHING to do with her behavior issues, and those funny little sniffing noises were just a habit she had. Just trying to give you something to think about. If you haven't seen a PANS specialist, it would be well worth your while to do so. It's amazing what a physician with the right take on things can do. Dedee

I'm just throwing this out there because I'm not sure what your SSRI history is. My oldest son was on SSRI a few years ago. At one point we switched him to Luvox and he took a drastic turn for the worse. It was very scary. When we switched over to Celexa things improved. His psychiatrist at the time said that some kids have a very negative reaction to Luvox. I don't know that is what's going on here but always something to consider. Hope things improve for you soon. Dedee

Me too please....I just referred someone to him.

I understand there arent any specialist near by. However, I think it may be time to consider a road trip. This may only be your second flare but most likely won't be your last. Many of us here travel to find someone who really knows how to treat this illness. It is worth the time and expense. I think your daughter may need to get a work up for infections other than strep. Perhaps she has been exposed to myco or something viral. You might consider a steriod burst after consulting with one of the specialist. I completely understand your desperation and your sense of lonliness. Check out the list of providers and make the investment. It is worth it. BTW, in terms of supplements.....the latest and greatest for us has been acetyl glutathione. Has helped my daughters OCD tremendously. Normally glutathione can not be absorbed orally, but the acetyl glutatione is a new form that can be and it has been awesome for my daughter. It is rather expensive, but I was eventually able to find it for $45 for a two month supply. Best of luck. Dedee

I'm lost......a new test?? I would love to know if there is something else that could help us understand.

My middle son who is PANS and has CVID had always been very small and thin. We kept thinking he would get a growth spurt when he hit puberty but that didn't happen. We started all of our children on camels milk 5 months ago and all of the sudden he started to gain weight and grow like crazy. Maybe it was coincidence, but I don't think so because my daughter hit a growth spurt at the same time. His growth has been amazing since the camels milk. I have heard similiar stories from others who had small children. It's also good for the immune system. Of course it isn't cheap, but we just use a minimal amount, but it has worked for us. Hope you find some answers. Dedee

I would have to agree. I have gotten many mixed suggestions about methylfolate. Most have been to give very high dosages. But I have found that my kids do better on lower doses. Only one of my kids who has a double mutation gets a higher dose and that is only 2mg per day. My daughter gets 400mcg per day and my oldest son gets 800mcg per day. They seem to do well on this. It's a very grey line and a balancing act for sure. Dedee

That's awesome! You are lucky to get in so quickly. Please keep us all updated. Best of luck. Hope you get some answers and some results.

I frequently felt the need to cuss with a PANS child. Lol. I understand that Dr. L is a very good doctor. But I will hold my stand on treating the Myco p. Again I would encourage you to seek the opinion of an LLMD. We went through 18 months of H*** before finally getting on the right antibiotics. My daughter is finally doing much better two years after her diagnosis. You can try the IVIG and put a lot of time, effort and money hoping it will help, knowing there is a possible underlying infection that is not being treated. Or you can at least start antibiotics first....the worse thing that can happen is no response and possibly you will get a better outcome from the IVIG when you do it. Myco is nothing to fool around with. I certainly wouldn't roll the dice with those titers with the "hope" that they don't mean anything. Dedee

We use probiotics, nystatin, and garlic.

Thanks to all of you who have replied and pm'd. LLM, I have actually checked my son for the KPU and he was boarderline positive. So I have been treating him with zinc and P5P. He is also compound heterozygous C677t/A1298c. As you well know, there is little known on how to treat the A1298c mutation, but we are treating him along with the others for the C677t. I have considered that he may have some depression issues related to the A1298c mutation. He is on 5HTP for several years. I am considering an SSRI to see if that may help some of the social anxiety that seems to be related to his eating. Dr. Storch thought that should be considered. Arial95-The whole bribery thing is brillant actually. Of course he would love a new (used) truck or a little fishing boat. He wants so badly to be on a college fishing team some day. I think you may be on to something here. Of course, as I mentioned, his fear is huge so he may rather continue to drive around the old 1995 S10 that is literally about to fall apart. But hey, it's worth a try. I've never been above bribery. Where should I send those 3 easy payments anyway? Thanks so much everyone for your input! Dedee

My oldest son is 17 and has had PANDAS since he was 7. He has been relatively stable since he was 11, which was when we finally found a specialist, had his tonsils removed, and put him on continual antibiotics. Since then he has been an A-B student, not given us any real trouble and hasn't had any real PANDAS issues to speak of. His only issue has been some residual eating problems from as far back as I can remember. He only eats certain things. Has a very limited menu (it's mostly a texture thing). We have tried counseling many times in the past and with no real gains. The summer of 2011 we tried the USF CBT intensive program, but he went for two sessions and then he refused to go back. He is 6' 180lbs so obviously I couldn't force him into the car. He absolutely denies that this is an issue and says that I am the one with the problem. So now here we are at age 17 and things seem to have gradually gotten worse. He doesn't even eat in front of others now and only eats in private. Obviously a social issue. When I talk to him about it he refuses to admit it is a problem. Honestly, it's like talking to an addict or something. He says there is nothing wrong with wanting to eat alone and no matter what I say he denies there is a problem. I can just see him sinking lower and lower with this issue. My problem is that he is 17 and I have less than one year if I am going to help him. I don't think this is an infectious issue, his strep titers have been stable. I can't stand that he doesn't do anything with his friends or have a girl friend or anything because it would involve eating out. I feel like I should do something. So yesterday I called Dr. Storch at USF (the nicest man ever). He knows my son because he interviewed him for the program and then we spoke after my son refused to return to the sessions. He said if I really felt I should do something that I could give my son an ultimatum....he could either go to the USF program and participate or I would place him in an inpatient residential program (he suggested Rogers in Wisconsin for eating disorders). Of course I would have to be ready to back up that threat and have things set up and ready to go with the residential program. This is really hard.....I want to help my son. I know this is very dysfunctional and he is not going to develop normal relationships without working through this. On the other hand, I have seen how huge his fear is and I'm not sure of what his response would be if I backed him in a corner that way. He is such a good kid but I feel like I'm not being a good Mother if I don't do everything I can to get him through this. What should I do? Do I just leave this near adult alone with his issue and his denial. I have taken him to therapy for years (literally 2 years) while he refused to do a darn thing (when he was 12-14). Then there was the disaster in Florida. Should I just throw my hands in the air and say I'm done or do I keep pushing until I possibly push him too far. Does anyone have the answer? Dedee

I would say that the key words her are "to her knowledge". If you have a physician who does not realize that Mycoplasma is a big player in PANS then you need to quickly get another physician. You have high IgG and IgM levels and Myco p is an infection known to be present in PANS patients. In addition, you do not necessarily see corresponding respiratory symptoms in patients with high Myco titers. Myco can be very difficult to get rid of. My daughter has been treated for two years now and it was only after getting help from an LLMD that she has started to show improvement. You must get help from someone who understands how hard it is to get rid of Myco. Your average physician will not have a clue. Find an LLMD. Most LLMD's who see pediatric patients will know PANS as well. Don't waste your time on non-speciality physicians. It's way to frustrating. Dedee

So you say he is positive for Mycoplasma? Looks like you have a long list of antibiotics and Myco should be covered. However, different kids react differently. He could be having a herx and that is why he is worse. My daughter also has Myco and we fought it for nearly two years before we gave in and found an LLMD. No one knows Myco like the LLMD's. We have been on two different combo antibiotics and she is doing so much better. We work diligently on preventing yeast and on excreting toxins. One of the best supplements I have tried is acetyl glutathione. We started this a few weeks ago and it has made a big difference for my daughter. I know that Dr. T is an excellent physician. I am in awe of his dedication to the PANS community. However, the LLMD is the best for treating Myco and you may want to look into the possibility of lyme in your son. IVIG can be very helpful, but in the presence of active infection it doesn't always give the best results. Best of luck. Dedee

We did two HD IVIG's and we saw gains for up to one full year. If your daughter is currently doing well I would hold off and see how she does. I have heard that you can actually do harm by continually doing IVIG. I can't remember the exact situation or how frequent it is when this occurs so I'm not saying you have done harm to your daughter, I'm sure you haven't. Just saying that if things are looking up you might want to give a short break and see how things unfold. Watch her levels and so forth. Also, I completely agree with the CBT recommendation. If your daughter is in a good place this is a wonderful opportunity to introduce ERP. No better place around than USF. This would be icing on the cake for you. Best time / money you will ever invest. Dedee

I am so sorry you are still here after 3 years. I have been following your journey and you have come so far and gained so much knowledge. Personally, I don't know how you manage sometimes. You are an awesome Mother and your persistance has paid off in many ways. Just the fact that your son was diagnosed at such an early age is testimony to how in tune you are to your children and how didicated you are to their recovery. I can not imagine where your son might be had you not intervened so early. So do not only think about how far you have come but the obstacles that you have prevented by your persistance. Also, your kindness and support to everyone else here is invaluable. I will pray that this next year brings great healing and comfort. Dedee

Yes, my daughter constantly complains that she feels like she is going to throw up. It was worse when she was in a flare, but even now when she is more stable she still has complaints almost daily. The complaints of the constant "tummy ache" have gotten better so I am hoping this will too. Dedee

I agree with the Augmentin or biaxin. Doxy is used more to treat myco & lyme but doesn't work well for strep. Another option is clindamycin. I would just try to avoid using amoxicillin. It has a high failure rate. Dedee

We are using camels milk this year. It has antiviral and antibacterial properties. So far only one virus this winter. Keeping my fingers crossed. Dedee

Yes, you should start treatment as soon as possible. Mycoplasma is a stealth pathogen and can invade different body systems. Once it has invaded those cells it becomes very difficult to treat. My daughter evidently had it for years and then it was "activated" when she recieved the flu mist. That is when she became extremely ill. We have been fighting it for two years now and while her titers are beginnning to drop she is still positive. Many physicians under estimate the seriousness of myco p. and it goes under treated or not treated until the immune system is severly compromised. You need to be treated by someone who REALLY understands myco p before the rest of your family ends up positive as well. JMHO. Dedee

That's encourageing to hear about your son's IgG levels going up. Sorry to hear he developed an allergy though. My son is IgG deficient but we havent checked his levels since starting the camels milk. The biggest thing we noticed with my son was that he has started a growth spurt since starting the milk. I don't think it was coincidental. He used to be shorter than all the boys in his class and now he is the same or taller than most. He is loving that! So I feel like it must be helping. Just wish it was a little more affordable. Dedee

I started at 1/3 cup but then moved up to 1/2 cup. Thats when she had trouble. So I went back to 1/3 cup. That has been where we stayed. Seems like she has regression when we go up. Most likely we could push through it but we have been switching antibiotics and other things so I really just haven't tried. I think its similar to a herx when she gets too much. Just a theory. But she has done great on the low amount.

I use it with my PANS kids. I see the most difference with my daughter who is of course our worst case. She has had less defiance and a more calm attitude. She is just easier to negotiate with. There was a day or two regression the first week but we decreased how much we were giving and it went away. Just need to start off slow, like anything else. We have seen a great growth spurt in both she and my son since starting it 5 months ago. It is expensive, but we don't use a huge amount. Also, since all of our kids like regular milk, we just mix it with their regular milk and they never know the difference. Actually, I have drank it and can't tell the difference either. We get ours from camel milk association on line. We buy it frozen. My mother also uses it for her diabetes and it has brought her glucose numbers down by 20-30 points per day. It's a little pricey, so it's worth a try, but if I didn't get positives from it I for sure would not continue. Go to the facebook page for more info. Best of luck. Dedee

Thanks!