Dedee

My advice is to get strep titers and start her on an antibiotic. I would skip the amoxicillin as it has a high failure rate for strep. Either Augmentin or Zithromax would be a good choice. Get your hands on a couple of good articles that are listed in the pinned thread and read over them and take it to your pediatrician as well. It would be great if you could take care of her tics by getting rid of the strep and then you can get her off the citalopram. My son took citalopram for his OCD for a few years. It did help but caused weight gain which really affected his self esteem. He was weaned off after having his tonsils removed and clearing the infection. He has very gradually been able to loose the weight but still has self esteem issues. Best of luck with the pediatrician. Dedee

My daughter had constant complaints of stomach pain. Actually during all flares she goes back to the stomach pain. Our Nurse Practitioner says it is an inflammatory reaction in the gut as well as the brain that occures during these flare ups. Probably something to that. Usually as my daughter's psych issues go away, so does the complaints of stomach ache. We even had an upper GI study done at one point because she complained so often. But everything was normal. I think stomach ache is a common symptom in PANS patients. Dedee

Actually my boys and girl were very different, but not in the way I would have expected. My boys were all anxiety and OCD. No defiance or rages. Never a discipline problem. Just your garden variety OCD, anxiety, & occasional tics. My daughter however was so different I didn't even recognize it for a while. We called her the "strong willed child" for years. Now I look back and realize these were "mini" episodes. We thought she went through the terrible two's for two years. Everyone kept saying we needed to be more firm or more consistant. She is the youngest so of course we thought we had spoiled her. I just couldn't understand because I felt like I had treated her the same as I did the boys but she ia such a challenge and very high maintenance. My boys are so sweet and good natured. They never give us any real problems. It finally hit me in the face full force after she received the flu mist and then the next day she started with "real" OCD symptoms. She couldn't do her homework because she thought the writing was so bad. She would erase every word over and over. She couldn't leave my side. Afraid of dirt, etc... Then I knew what I was dealing with and we immediately made an appointment for Dr. Murphy. When I explained the whole long story to Dr. M. she said that actually my daughter was the more common presentation with the rages, defiance, and so forth. Glad I didn't have to go through this with the boys. The rages and defiance are so hard, then add to it the emotional pieces that come from being a girl. Whew, she wears me out...... Dedee

You should add Mycoplasma Pneumonia IgG and IgM titers. Even if your child does not have signs of a respiratory infection, get them anyway. Also, get an immune panel. Your doctor should know what that includes. If possible get strep titers and myco p titers for everyone in the house. Good Luck. Dedee

Well as my Mother would say.....Buck up girl, this ain't gonna be easy. Yes, it is frustrating. You will go through a wide range of emotions. Eventually I ended up pissed off at the whole medical community (and I'm a nurse!). So mad has gotten me through alot and I don't take much from any Doctor or their staff anymore. I realize ahead of time that most office's are going to think I am crazy and a bad parent before it's all over. So I can just let that go. You can't worry about what people think or you will go crazy. Come to the realization that you can't change the minds of most physicians and you are going to have to do things you never thought you would for the sake of your child. For example, I never thought I would lie to my physician to try to get a prescription for steriods for me so that I could give them to my daughter. OMG, how horrible right? Oh well, you do what you have to do to help your child live a "normal" life. In a perfect world I wouldn't have to do those things, but in a perfect world I wouldn't have my sweet brown eyed girl clinging to me afraid to go outside or leave my side. She wouldn't be crying or screaming at the thought of taking a bath because she believes there is dirt in the bath tub and the water isn't clean. Nothing about this disease is right and I will do whatever I have to do to help relieve the suffering of my children. To answer your question, who knows when main stream medicine will come around. My recommendation is not to waste your energy worrying about that. Get an appointment with a specialist now. That is where you will get validation. Eventually, when your child is stable, you will come to a place where you will join the many who have taken up the cause of spreading the word about PANS. There are so many on this board who do wonderful things toward that cause. God bless them all. I do what I can in my small community. I think most PANS parents do. First and foremost, take care of your family, the rest will come later... Dedee

Our Doctors feel certain we can get rid of the mycoplasma. My son's titers have come down to normal limits, although he does still have some symptoms. We have decided to leave him on the antibiotics for another 3 months to see if that will get rid of those remaining few things that are still there. We have seen 3 doctors about the myco and none have said we wouldn't be able to get rid of it. I realize it may take some time, but time is all I have right now anyway. As long as I have the right Doctor helping and I feel like we are moving in the right direction I am happy. It's those times when we get stuck and the progress stops that I start to worry. Don't let yourself get too hung up on all the "what if's". Take it one step at a time. First step is find the right Doctor and get antibiotics. So making your appointment now with a PANDAS specialist should be your priority. Don't wait, start researching and make your decision today on who you want to see. Chances are you may have to wait a bit to get in. He or She will lead you from there. Dedee

That is a very complex question. Since there is no common "standard of care" yet for this disease, most physicians are doing what they see works best in their practice. Most practice very similiar protocols, but much of it is individualized to each patients presentation. I believe there is one specialist who does one round of IVIG and then has a wait and see approach as to what sort of results you get. If there are good results after a certain time (not sure what the time is), that is it, if not you do another round. When we got ours done our physician did two rounds of IVIG about 4-6 weeks apart. I have recently learned that she now recommends the IVIG every month until results are where you want it. Also, I think that much of the decision for IVIG is based on how the family is getting it paid for. For some families, insurance will pay and for others they are paying 100% out of pocket. So for us, it came down to finances. We did two IVIG's and because we had to pay it all out of pocket we had to stop at that. I would like to do a third, and her doctor is agreable, but we just don't have that kind of money right now. So I think there are many variables involved. I think it is becoming more common to do multible IVIG's as needed for results, but again, not everyone is able to do that. Also, fortunately there are some who are lucky enough to only need one. That would be awesome..... Dedee

My daughter also had several cases of pneumonia over a two year period. One winter she had it three times and the next winter twice. I approached my pediatrician and asked her didn't she think this was unusual since most "healthy" children don't get pneumonia like that. She basically blew me off and said as long as she improved with the antibiotics it was nothing to worry about. Wrong! It was only a few months later that my daughter had her huge exacerbation after a flu mist and was in a full blown PANS episode. Only after seeing Dr. Murphy in Florida (A PANS specialist) did we get mycoplasma titers and find that her IgG and IgM levels were through the roof even though she wasn't showing any signs of a respiratory infection at that time. As long as the infection is present, the body will continue to react and produce antibodies that cross the blood brain barrier and cause the inflammation. You can do IVIG to "reset" but the "new and improved immune system" will still produce antibodies because there is still infection present in the body. You must clear the body of infection with antibiotics (or at least for the most part)before attempting to halt the autoimmune response. There are several PANS specialist who can help you with Myco p. I know that Dr. B has worked with others who have had myco and other co-infections before and as another post said, most all LLMD's are great with Myco because it is a frequent co-infection with Lyme. It's the main stream physicians that are mostly ignorant. Even after we got my daughter's titers back, her pediatrician wanted to give her 5 days of zith and that was all. That is laughable, since here we are nine months later still dealing with it. Thank goodness we have made progress during that time, but 5 day would have brought nothing. My advice is to make an appointment with a specialist and get on the internet and read as much as you can. I did a google search on Mycoplasma and neuropsychiatric disorders in children and read for days. You will feel empowered with the knowledge you gain. Dedee

Hi Lauren, I have 3 PANS children. One is reactive only to strep and the other two we discovered this past year were positive for Myco p. Both of the younger ones have had pneumonia in the past but were not showing any signs of active respiratory infection at the time we got the positive titers. We had both elevated IgG and IgM titers. I am sure you will do your homework and read plenty on myco p. but the basic is that it is a very difficult bug to get rid of because of it's ability to "hide out" in a somewhat dormant phase and replacate. Some physicians refer to it as a cross between a virus and a bacteria. Myco may take many months or sometimes up to two years to clear completely. Some children will have Mycoplasma and never have neuropsych symptoms. Other children, such as ours, are triggered by the mycoplasma causing an autoimmune reaction and the chain reaction that occurs with PANS children. The IVIG is not given to treat the bacterial infection. It is given to stop the autoimmune reaction and the inflammatory reaction(in the brain) that causes the neuropsychiatric symptoms. Also, it helps strengthen the immune system and (hopefully) decreasing future flares or a least the severity. However, IVIG will not be effective if the infectious process has not been addressed. So it is important to get a good grip on finding the appropriate antibiotic that will work for your child. Seems that every child reacts differently. There are many different species of mycoplasma bacteria. Therefore different children will react differently to treatment depending on which species they are infected with. Testing to differentiate myco species is very expensive and not normally done as part of the treatment. They start with the most common antibiotic and treat by results. We started with Zithromax and saw little effect after one month, so we switched to Biaxin and saw huge improvement in days. The improvement halted after a while and so we switched to Erythramycin. It is important to see a physician who has experience treating mycoplasma. Our current provider believes we still have residual inflammation and we are going to do a round of IV clindamycin with oral Minocycline starting next week. Minocycline is also a good antibiotic for myco because it is an antinflammatory and also opens the blood brain barrier. Some doctors use it in combination with Zitromax or another antibiotic. I know you are upset that you have this to deal with but it is better to know who the enemy is so to speak so you can address it head on. Once you get the appropriate antibiotic I believe you will start to see great improvement. Best of luck. Dedee

Tpotter - I tried to pm you but couldn't get through.....

Hi Nancy, Hope your family had a good Holiday. Just wondering if your son is still taking Lamictal? Also, what dose did he start off on and did you ever increase the dose? The Nurse Practitioner says she hopes this is only temporary until we can get the physical issues under control. At this point, I'm just glad to see something helping. She has her on a pretty low dose of 5mg twice daily. Is this pretty standard for PANDAS patients. My daughter weighs 60 lbs. Thanks for your help. Hope you have a great New Year! Dedee

Great that you have already tested for myco and she is negative. I would still consider the Zithromax if you fail to get relief from the Augmentin. Hang in there.....

Lauren, she did well after her IVIG and did make progress. I would say about 60% recovery. Then with the recent illnesses we have seen regression again. I would love to do another IVIG, but at this time we just don't have the money since our insurance did not pay for any of the others. I am pleased with the gains we made with the IVIG and most of it has stuck. Still, we aren't satisified with where we are and it isn't a happy life for our daughter. Before the IVIG she wasn't even able to go to school, wouldn't take any medication or even take a bath. So we are still way ahead of where we were pre-IVIG, but again, the rages and OCD are still a big part of our lives and I won't stop till I have exhausted every measure to get my daughter back. Just praying this protocol works. Dedee

I am so sorry to hear about your daughter. I know this is an agonizing, frightening time for your family. Stay strong, you are in the right place and it sounds like you at least have a Doctor who is open and willing to listen. Your ASO & AntiDnase B levels do indicate strep but I am also concerned about the cough that you say she had. If she has Myco p. in addition to strep then the Augmentin will not help. You may consider switching to Zithromax and also getting IgG and IgM titers for Mycoplasma pneumonia. Zithromax often works when other antibiotics don’t. Also, it will cover both strep and myco p. The next thing you need to do is to make an appointment with one of the PANDAS specialist right away. I don’t know where you live but there is a list of physicians on the pinned thread. It is not unusual to have to travel to find a well respected PANDAS expert, but I can assure you it is worth the effort. It isn’t worth wasting your time with other specialist unless they have experience treating PANDAS / PANS patients. We have personally traveled 13 hours to see one of the PANDAS experts. Many on this board have traveled to get the treatment their children so desperately needed. There are some excellent physicians out there who can help you and keep you moving in the right direction. BUT, you have to be pro-active and seek out the appropriate Doctor and always be your daughter’s advocate. You know her better than anyone so always go with what your Mother instinct tells you. Welcome to the board. Please keep us updated on your daughter’s progress. Best of luck. Dedee

Well we started the Lamictal and the Minocycline on Friday. I’m not sure which one it is but something seems to be helping. Her mood seems to be a little more even, with not as many rages. Nothing drastic, but I’ll take what I can get at this point. I am supposed to call the Doctors office tomorrow to see if they are going to be able to get the IV antibiotic so that we can do the protocol next week. I would like to start next Friday, so that we can get as much done over the week-end as possible. I talked to some of my Family about it over the week-end. Probably not a good idea. Just leaves me frustrated. Of course, they think it is an extreme thing to do since she is doing “so much better.” All they see is her sitting quietly on my lap or her Dad’s lap (because she won’t separate) and not causing any trouble. They don’t understand the issue behind her not eating until I am right beside her and eating the exact same things as she is. They think it’s sweet! Umm, not if that is the only way she can eat! Also, they don’t see what happens once we get home......a completely different kid. When you try to explain that one, well then you get the look (or sometimes comments) about discipline, blah, blah, blah......You all know the routine. I am just so sick of trying to explain myself and justify why I am doing these things that seem so “extreme” to everyone. Sometimes I even have to explain and justify to my own husband. I am worn out from it all. I tell myself I’m just going to keep it to myself but then I get some crazy notion that my family might be there for support. I have one sister who is pretty good and open minded, but then she talks to my other sister and then I get the call about why do I think this is going to help, yada,yada,yada. Uggg,....sorry for the rant. This thing has gone on so long that I have started losing all confidence in my own judgment. I so desperately want a better, more peaceful home life for the New Year…... Dedee

Most of you remember that my daughter had two HD IVIG's back in the summer and made some improvement but lately all improvement has halted. Since school started she has had a bad stomach virus and a really bad cold. Both of these caused regression. The worst of it was a few weeks ago when she got strep from her babysitters kids. Since then it has all been down hill. We aren't as bad as before IVIG but still not in a good place. At least she is still taking her medications. We have given her a steriod dose pack and she has been on motrin, both of which have only given us minimal improvement. She is currently on Erythromycin and full dose Zitromax. We added the Zith back when she got the strep symptoms. The Erythromycin is for the myco p. So, took her back in to see the nurse practitioner yesterday (The one that did her IVIG.She is very good) and were discussing options. The suggestion was to try a protocol that is being used for RA and other autoimmune related illnesses thought to be triggered by mycoplasma. The protocol is from a Dr. Sinnott. Basically it is oral minocycline and 5 days of IV clindamycin. She says we can do this at home since I am a nurse and can infuse the medication without any problem. We would put the IV in at the doctor's office and she would get her first dose there (in case of reaction). The rest would be given at home so the only real cost is the medication. She says they have seen good results. So, what do you guys think? Anyone heard of this? Doesn't sound extremely risky considering all the antibiotics we have used already. We discussed the yeast issue and she said she would be very pro-active in prevention and early treatment of that if needed. Thoughts.......Opinions???? Dedee

I think in many situations you need to go by symptoms. It may not have been your house at all but just coincidence that he was there. My oldest son is 16 and has been on antibiotics since he was 11. He does not have tonsils but he has never had a completely normal ASO or AntiDnase B. Even when we switched him from amoxicillin to full dose Zith for 3 months his titers actually went up by 200 points. His current titers are higher than your sons but Dr. Murphy said not to worry as long as his symptoms are stable. I know you said he had a couple of bad days, but you were able to get that under control so that is a good sign. Numbers are highly individualized......some PANDAS kids have horrible symptoms with completely normal titers. Your son has probably been exposed to someone (who knows where or who) and his body reacted but this should pass. If he needs antibiotics for a while longer, then so be it. With this disease you can only worry about now and try not to get really hung up on the future. He will grow out of this and my guess is sooner than later. Try to stay positive and I agree that consulting with your doctor is always a wise idea. Best of luck..... Dedee

For those who have stubborn doctors and need to get strep titers or something else, there is a Lab franchise called "Any Lab Test Now". You can get labs drawn without an appointment or order. I think you have to pay cash instead of going through insurance the way I read it. I havent used it but wanted to let people know it is an option. Beth Maloney sent out an e-mail and it was part of the information in that e-mail. Since I hadn't seen anything about it here, I thought I would share the information. Below is a link to the website. Hopefully I inserted that correctly so that it will work. I wish we didn't have to go to such measures to help our children, but it is good to know it's there if we need it. Happy New Year to all! http://www.anylabtestnow.com/#panel-2

I think it shows that you are doing an incredible job teaching them that this is seperate from who they really are. I know you take you kids to Rothman and that is exactly what they want the kids to understand. This is how they will learn the skills to conquer their OCD. How awesome for you to have been privey to that little piece of confirmation that you are doing a great job in a horribly difficult situation. Remember that moment in the future when things aren't so good and let it bring you comfort. You are obviously an awesome Mother. May you and your family be blessed with a wonderful Holiday Season. Dedee

My daughter who is 4 months post 2nd HD IVIG is in a bad flare. During the last month she has had a horrible stomach virus where she vomited & ran fever for two days and then the next week I suspect she had strep. Her babysitters kids both had strep and she complained of sore throat & headache so I switched her antibiotic to full dose zith (she was on erythromycin for myco p.). Since then her rages, ocd, and defiance has returned full force. She isn't very receptive to CBT during these times because she is so unreachable (if that makes sense). She has been on the Zith and on motrin for two weeks and it has settled some things down but we still aren't where we need to be. I'm hoping to call her doctor and see if I can get some steriods, but I need to know what to ask for. The practioner that did her IVIG is pretty good about helping out but it's best if I have something (like an article) to send as a reference for dosing. My other option is that I might be able to get my doctor to give me a steriod dose pack using my disk problem as a cause, but I wasn't sure if the dosing was right on the dose packs. Anyone have any suggestions? We really don't have the money for another IVIG right now so I need another option if possible. Hope everyone is having a great Holiday Season! Dedee

Do not dispair...many do not respond to penicillin alone. The fact that you got some relief from an antibiotic is a positive sign. You just need to keep moving forward in finding the appropriate one. Antibiotics are like shoes to PANDAS, you may have to try a few before getting the right fit. I agree with the previous poster, Zith is a good one to try. It covers both strep and myco p. Usually the hardest part is finding a physician who will agree to help you in this process. If you have found one already, you have half the battle conquered. Best of luck. Dedee

Hey Nancy, Just wanted to let you know that I found an OLE that is 20%. It is online at Vitacost and is made by Nature's Plus. I have no idea if that extra 2% makes any difference but just thought I would share. Best of luck. Dedee

Nancy, That sounds great. Glad to hear things are going well. Just curious as to what kind of Olive leaf extract you are using. We have just started using it in our family but just bought some of the shelf. Wishing you and your family the best of luck and a great holiday season. Dedee

I really hope this is a lasting thing. It was a great help for my oldest son and it did last. Please post again and let us know. Thinking of you and sending PV. Dedee

Nancy, my friend.....you read my mind. Actually I resorted to a margarita over the week end (but had to limit it to one). My next plan is shop therapy...Christmas is coming after all. Actually I think I will start some Motrin for him. I have never really tried that on him before. I will add that to his meds tonight and say a prayer. Thanks for the suggestion. Sometimes I just get brain dead from all the chaos.... Dedee