Dedee

Yes we get ours in 30 day doses. It may depend on your insurance or on how your doctor wrote the script. Seems like a real pain to have to go to the pharmacy every week. I would talk to your doctor and make sure the script was written to dispense 30 tablets. If that is how it was written, they are supposed to dispense it that way unless insurance refuses to pay for it. Dedee

I would look into other potential triggers both bacterial and viral. If his titers are down you should at least be seeing some decrease in symptoms. My guess is there is something else lurking. Dedee

I have a close friend with two daughters both with a history of multible infections. One already has a history of OCD behaviors and tics and the little one can't stay healthy (obviously has immune issues). She can't get any resolution with her family doctor and they are sending her to LeBonheur in Memphis. I have tried so hard to get her to take them to Duke but she is trying to stay "friendly" with her pediatrician. Does anyone have any experience good or bad with this hospital? Dedee

Pandasphilly, When your son went to Rogers, was he a willing participant or did he only go because you made him? I have a son who still has some residual eating issues but he is in complete denial. Dr. Storch recommended Rogers inpatient for him. Only problem is we are worried that my son would not participate and may even potentially run away if forced into the program. This is his only remaining PANDAS symptom but it still affects his social life. My son says it isn't a problem (thus the denial), but clearly it affects his self esteem and relationships with friends. I doubt we will ever force him to go since he is 17 and close to being 18. I just wish he could overcome this in some way. I have tried bribery, but that didn't work either. Stubborn kid wouldn't even do it for a car. How's that for denial. Dedee

My questions are where do things stand from an infectious stand point. What are his infectious triggers? Is he strep, mycoplasma, or lyme triggered? What antibiotics is he on? Sounds to me like he isn't on the right antibiotics if he isn't making any progress. Are you following titers to make sure they are going down? You need to make sure you are seeing a PANS / PANDAS specialist. Not just someone who believes in PANDAS but one of the top specialist in the field. That will mean you need to travel. This sounds like a serious situation with your son. You need someone who seriously understands this illness and the complexities of treating it. If he has mycoplasma or lyme, I would suggest an LLMD. If he is strictly a strep trigger, seek out one of the PANDAS guys. Make an appointment right away. Therapy is great, but he needs medical treatment also. IVIG will only do it's job if you have the underlying infection under control. We treated with IVIG but it only helped short term until we got the right antibiotics on board. JMHO. Dedee

Dr. Storch actually recommended Rogers for one of my sons who has an eating disorder. He thinks highly of it's program especially for children who have OCD issues that involve eating or who have eating disorders related to their PANDAS / PANS. We have worked with USF and Dr. Storch with two of our other children and I value his opinion. Also, one of my daughters therapist from USF ended up going to Rogers to work after leaving USF. She was awesome. That is all the information I have. Also I can testify that the program at USF is first rate. Where ever you decide to go, it's a great idea to add CBT / ERP to your treatment plan. Best of luck. Dedee

Well, she had several good days and then yesterday it all went to h*** in a handbasket. She had a major raging episode which ended up with the police at our house. Have to say that was a first ever. She was so furious when I took away her ipod and made her stay in her room because of her violent rage that she called 911 and then hung up right away. When they called back I answered the phone and told them exactly what happened....that I had a 9 year old who was having a tantrum and thought she had the meanest Mommy in the world so she called 911. Told them they were welcome to come out if they wanted so they did. Needless to say my daughter was horrified when they showed up. I told her since she called them she had to talk to them. Over all it was a good lesson for her. Just a little embarrasing from a neighborhood perspective. Anyway, I guess she is having some herxing after all. Guess we will just wait this out and see how things look in another week. Tomorrow will be end of first week so maybe things will start to get better in a few days. Appreciate everyone's input! Dedee

How long have you been using antibiotics? Depending on what the infectious trigger is you may consider changing antibiotics to see if you get a better response with something different. If you aren't seeing a PANDAS specialist I would suggest making an appointment right away. You may need to consider IVIG if things don't improve. Best of luck. Dedee

What other antibiotics have you combined with the Zithromax to treat lyme and / or coinfections. We recently stopped my daughters septra because she was reacting so badly to it. She remained on the Amoxicillin. The LLMD told me to change to Zithromax and Rifampin. She said to start with the Zith first and after a week or two if she wasn't showing any herx reaction to add the Rifampin in. So I started the Zith this week but didn't stop the Amoxicillin yet. Hmm, I know I was supposed to but I just wanted to see what would happen. Started the Zith on Monday. She had one rage episode on Tuesday evening. The rest of the week has been uneventful (knock on wood). She isn't perfect, still struggles with taking her medicine and has some OCD and sensory issues but she isn't crying, raging and defient like the last few months have been. In the past Zith alone was not very helpful for her. So I am just wondering what others experience has been for Zith treating Lyme or bartonella. Our LLMD thinks she may possibly have babesia also. What seems to be the best combo drug with Zith? Appreciate any insight here. We are so due some peace in our home. Dedee

My daughter took it with no problems. We aren't taking it now because we were having problems with our new insurance paying for it but I think we have that worked out and are about to get more shipped out. We started out slow with just one of the 150mg capsules a day for one week and worked up till she was taking it three times a day. It really seemed to help with her yeast. Dedee

It looks like they did serum IgG, IgM, & IgA levels to check immune function. Without the reference levels for that lab it's hard to know if that is normal or not. As far as the myco titers, you have the problem I did with one of the labs I was forced to use once. They didn't run a quanatative level on the IgM. They only tell you if it is positive but don't actually give you a numeric level. It's only helpful in that it says yes there is an active mycoplasma infection. I made sure after that we used a different lab. I like to follow the numbers to see that they are falling and not going up. You have a number for the IgG level. So what you know is you need to be treating. That is good enough for now. Just make sure that from now on the lab you use gives a numeric value for both the IgG and IgM. We have been doing levels on my daughter every six months for 2 years. Her levels are dropping very slowly and we just now got her IgM levels in the high normal range. Her IgG levels are still elevated but are coming down so that is the important thing. For me it is important to have something tangible to see we are making progress. My daughter still has neurologic symptoms from the lyme and bartonella. Unfortunately, we can't monitor that as easily. Dedee

My oldest son is one of the "fortunate" (if you can call it that) PANS kids that is only triggered by strep. He always responded very well to antibiotics once we got them started. If you are dealing with strictly strep you should get a good response with the Augmentin as long as the dose is high enough. If you don't see any improvement after about a week you might consider giving your doctor a call back. If this has been a long term issue it may take longer than that. It's not unusual to need to change antibiotics but Augmentin is a good one to start with. Many get good results with it. I know you are anxious to see results but I do think a few days is a little early to panic. Try giving Motrin around the clock to help with inflammation and see if that helps symptoms. Keep us updated. Dedee

It depends on the degree of her CHF. She should talk to her cardiologist and see if they are against her taking the antibiotics. I am a cardiac nurse and my mother also has CHF. I see lots of heart patients on these types of antibiotics. A quick call to the doctor should help to clear things up. It's a risk benefit thing. It is not good for her health to have this so the benefit of getting rid of it out weighs any risk the medication may have. Let the doctor make that call. JMHO. Dedee

Well the doctor called back today. She is stopping the amoxicillin and starting dd on Zithromax / Rifampin combination. If this isn't enough she will consider adding a third but she didn't say what it would be. We will start with the change slow as we usually do to avoid a huge herx. I will start the Zith first and add the Rifampin in a week or so. I really hopes this helps. We used Zith before but not with much luck. Don't think we ever used it with Rifampin though. Anyone out there have luck with this combo alone? Dedee

They gave her liquid versed before drawing her labs. It was very difficult because she doesn't take medicine well at all and especially liquids. Somehow we convinced her to take it and at least it gave her some relief.

Ok, I am going to step out on a limb here.....I am not in any way intending offence....Just wondering why would you take her to the doctor but then not treat her? Please understand that I am a nurse so we see things differently. Also, I am not in any way afraid of antibioitcs so that is just a difference in perspective. So I am assuming from your post and the symptoms you describe that you suspect your daughter has PANDAS / PANS and you are considering trying the amoxicillin to see if it helps her symptoms? Do you know if your daughter has ever had strep? Did she have an illness you can remember prior to her symptoms starting several months ago? Even if you can't remember an illness related to her symptoms starting doesn't mean she doesn't have PANDAS / PANS. Sometimes it just helps with the timeline. The only issue I see with you trying the Amoxicillin as a "trial" to see if it helps her symptoms is that if it doesn't help then it isn't a definitive rule out. She could have PANS from an infectious trigger such as Mycoplasma or lyme that would not respond to amoxicillin. If her infectious trigger is strep it may possibly help her symptoms. I know several strep responders that don't get resolution on amoxicillin though. So in my opinion, you could try it and if it helps then I think you could say she has high probability for PANS but if it doesn't help you still can't rule out PANS. Is that too confusing? Now, just from my personal experience from girls with PANS, her symptoms are very similiar to what I have experienced with my daughter in her early years before she was officially diagnosed. I would suggest you look into finding a PANDAS / PANS specialist and making an appointment right away. It will likely take a few months to get in and most likely you will have to travel. There aren't many of us lucky enough to live close to one of the true PANDAS / PANS specialist, but trying to talk to a regular doctor about this is a waste of time. I hope you can find some way to help your daughter soon. Dedee

Welcome to the forum. I am sorry to hear about your son. You have several really good things going in your favor though and I'm not sure you really realize how fortunate you are. Firstly you have caught this quickly and you have a physician who has given you an official diagnosis. Not only that but you have a physician who was willing to give you a 90 day trial of antibiotics. That means he actually has some knowledge about PANDAS / PANS. You are still waiting on lab work so you don't know yet exactly what your infectious trigger is. Could be strep, mycoplasma, lyme, or a combination. The fact that antibiotics have helped in the past is good. The fact that this particular antibiotic hasn't brought you to 100% does not mean this isn't PANDAS / PANS. It simply means that you need a different antibiotic. Usually if there hasn't been a significant improvement after about a month they will switch the antibiotic. Not to worry though there is still time to try something different. 90 days isn't that long for PANS kids to be on antibiotics. Just make sure you are also using a good probiotic. My daughter has been on antibiotics for 2 years. My oldest son took antibiotics for 7 years. He is off now and doing well. Now, as for you doubting the diagnosis......I suppose when things are looking good it is easy to doubt the diagnosis. I just want to discourage allowing yourself the luxury of denial. No one wants to think this is happening to their family. The prospect of living with this not pleasant. But you are here, so might as well pull yourself up by the boot straps and face it head on. Denial is only going to hurt your son. You need to educate yourself on this illness and be prepared to be your childs advocate in every way. Not every doctor, care giver, teacher, etc.. is going to be as understanding and educated as this neurologist you were lucky enough to see. It is very likely that your son may need to have cognitive behavior therapy to help with OCD and anxiety issues as he gets older. You will be the one to make that happen. Your son is most likely very intelligent (most of these children are). With his Mother as his advocate he has a bright future and he can accomplish anything. Don't let this scare you, he is simply taking a different road to the same destination. He (and you), will become stronger, more empathetic individuals because of this diversion. Everything in your post indicates that he has PANDAS / PANS, plus he has a diagnosis from a neurologist. Take a couple of days to absorb that and then gather up your determination to make your sons life the best it can be. Stick around this forum. Everyone here is awesome. You will get more support and information here than you could imagine. I hope I haven't offended you in any way. Just giving my perspective after being in your shoes a few times my self. Best of luck to your son and your family. Dedee

Lol....Yep, quite a life indeed. Fortunately, my older kids are doing fairly well right now. My daughter is the one struggling and we can't seem to keep her settled down for any length of time. Over the last 2 yrs and 4 months we have gotten 3 months here and there that are peaceful and we think wow we are really getting somewhere and then something happens and stirs everything up again. Definitely 2 steps forward and one step back. I can absolutely understand what you mean about the lab work thing. For a while we had to sedate my daughter just to draw labs but I think when it comes to this illness it is imperative to have lab work to know what you are dealing with from an infectious stand point and a immune system perspective. When we did my daughter's IVIG, she had to be sedated the entire time because she was so freaked out about having the IV in. It was a horrible time. Even now (she is 9 yrs old), it still takes both me and my husband to hold her down to draw labs. I would encourage you to insist on having labs done. I know you dread it. But there is no way to come up with an educated treatment plan without them. I have been where you are. I have cried while myself and three other people held down my daughter (even when sedated) to draw her labs. I just kept telling her that I was doing this because I loved her and it was my job to make sure she got better and was completely healthy. It isn't quite as bad now. She walks in by herself now. Her Father and I just have to hold her right before they do the stick because she sort of freaks at the last minute. Just get everything you need the first time. You will be glad you did. Best of luck. Dedee

I agree with LLM that you should investigate other possible infections as a potential cause for the behaviors. Also, there are other antibiotics that could be helpful such as clindamycin, or biaxin that you could try. Many PANS parents find they have to use a combination of medical treatment and CBT / ERP. Some OCD behaviors get "stuck" even after the trigger has been resolved. Giving the child the tools to help himself with these issues is very empowering. There are several programs just for PANS kids or you can try someone local who is trained in CBT / ERP for children. Many parents on this forum have found it very helpful. In regards to your statement about the FDA warning on Zithromax.....I pasted below one of my responses from a previous thread on this topic. Hope it is helpful...... I think there is being far to much made about the Zith topic. I am a cardiac nurse and so we are aware of many drugs with this alert. We have a list in every nurses station. You can google it and you would be suprised how many medications have the same issue. These are medications that (in medical terminology)lengethen the Q-T interval, putting the heart at risk for rhythm problems. There are many other medications that your children may take that do the same things.......Benadryl, Biaxin, Cipro, Diflucan, Celexa, plus many more.....Again, google "drugs that lengthen Q-T interval" and they will list them for you. The problem is usually with people who have pre-existing cardiac issues. Some may or may not know they have these issues. Those people born with some sort of congenitial defect and do not know it, then are placed on several different types of meds that cause the same problem are at risk for life threatening complications. So for instance you have congenitial long Q-T syndrome and then you get a terrible sinus infection. You start taking an antibiotic that causes lengethening Q-T, and a sinus medicine that does the same, then some diflucan for the yeast from the antibiotic, and maybe you are already on a blood pressure medicine that legethens Q-T, and then you get dehydrated on top of it and your electrolytes get out of whack......well then you get the "perfect storm" and it's a set up for life threatening rhythm problems. So you need to look at your family history. Have there been people in your family that have had sudden unexpected death unrealted to a specific illness or disease? Have there been members of the family with sudden cardiac death at a very young age? Do you know of family members with an Internal Cardiac Defibrillator? If you are still unsure, speak to your physician about your risk for sudden cardiac death. Just remember, it's rarely the drug alone. It's a combination of the medication and a genetic and /or physiologic defect. Hope this helps clear thing up. Dedee

Thanks so much for all of the replies. I ran a strep test (with one of our home kits) and it was negative. The week-end was a little better than the week (only a little). She had a decent day Saturday, a few melt downs in the morning trying to get ready for soccer. Some fatigue while trying to play soccer but coach gave her frequent breaks. Sunday she had bad tummy ache and nausea and took a three hour nap. Hard time getting up this morning, but she eventually was up and off to school without too much fuss. Should be interesting to see if she has to go to nurses office today. I really hope the doctor's office calls back today. I just don't know how much longer we can go on like this. I'm not sure how the LLMD will feel about me insisting on changing off of the amoxicillin. I think she will want to just add something to it. Ugg, so hard to know what the right thing is to do....... Dedee

Just from our experience, the Zith did not help much for the Mycoplasma. I know they say it should and we saw a tiny bit of improvement but nothing significant. When we started biaxin we started to make progress and then after a few months on that things stalled. That was when we went to an LLMD. More progress was made by starting combination antibiotics. We have monitored my daughters titers about every 6 months for two years. Last month was the first time that her IgM levels were in the normal range. It was high normal, but still within normal range. Her IgG levels are still very high but lower than they have been. So we feel like we are making progress after two years of antibiotics. We are still fighting lyme and bartonella and still have neurologic symptoms from that so we are far from in the clear. Our challenge now is to find the right antibiotic combo for that. I know it can be done though and have full confidence in our LLMD. The trick with my daughter is to start slow with the antibiotics to avoid a huge herx and work up to the full dose. I had some trouble with my husband for a while too. Finally had to just get firm and tell him to get on board or get out of my way because I am going to get our daughter treatment with or without him. He is a believer now. Not sure that is the way to handle every situation but I was just tired of the whole thing at that point. If I had it to do over I would make sure to start treatment aggressively from the beginning. That usually means treating through an LLMD. JMHO. Dedee

What is the infectious trigger that you are trying to treat with the rifampin alone? Do you have lab work that shows elevated strep titers or is she thinking lyme? If it looks like lyme then you most likely will need more than just the rifampin. Most lyme patients are on combo antibiotics before they see an improvement. I would not be quick to put your daughter in the bipolar, ODD, ADHD categories. It is unlikely she has been afflicted with this multitude of issues......more likely she has an infectious trigger which can cause symptoms which mimic all of these and more. Dr. L is great, but you might consider an LLMD if there is a possibility of lyme or one of the co-infections like mycoplasma. Best of luck. Dedee

What other antibiotic did she take when she was doing the combo and why did you stop it? How much does she weigh? My daughter weighs 75 lbs and she is supposed to be taking 750mg twice daily. Right now she is only on 500mg twice daily. We are increasing to 750mg at night starting tonight. We will leave the morning dose at 500mg for now. Trying to go up slowly till we get to 750mg both morning and night. LLMD says that amoxicillin only works on lyme when at high doses. When I did some research from Dr. Burescano, he said the same thing in one of his papers. Still seems like a lot though. Dedee

Lol...yes I just saw (and replied) to your post on another thread. It's strange that both of our kids are only on amoxicillin and both seem to be experiencing the same physical symptoms. What is up??? How much amoxicillin does your daughter take and how much does she weigh? I'm not comfortable with dd only taking amoxicillin but worry about how her stomach will react to more antibiotics. This is very frustrating. Dedee

Philamom, I'm not sure but my daughter is experiencing the same symptoms and she is also only on amoxicillin at present (just posted about it). I can't decide if her physical symptoms are from the antibiotics or because she isn't getting the right antibiotics. It is very frustrating. I am thinking about running some stool testing and see if that can shed some light. Ugg, this stuff never lets up. Dedee