Dedee

We are Myco P warriors also. Been fighting it for 2 years. I think we may be about to win this battle. What are the IgM titers? It will take a very long time to see IgG titers drop. We saw nothing on IgG for over a year either. What we saw first was a VERY gradual decline in IgM. The first year my daughter took Zith, then she took Biaxin. When we started seeing an LLMD, they put her on Minocycline and Cefdiner. She had a huge herx from that but her IgM titers really started to decline after that. We did that combo for about six months and then they wanted to switch her over to Septra & Amoxicillin. Ended up she couldn't tolerate Septra and we were never able to get her up to the optimal dose. We later found out she has a SNP that prevents her from metabolizing sulfa drugs. So currently dd is on Zith, Rifampin, amoxicillin. In January, her IgM titers were in the high normal range for the first time, but her IgG levels were still high. This was the first time though that her IgG levels ever read anything other than >5, so obviously we are headed in the right direction.
 
So what you need to look for is trending in the IgM titers because that indicates the status of the current infection. You may need to consider a different antibiotic combo. How are her symptoms? Is she doing better? If you aren't seeing any difference in symptoms then I think you absolutely should think about different antibiotics. Best of luck.
 
Dedee

You need to ignore the statements of those who are ignorant of PANS and its presentation. Unless they have lived through it then their opinion is useless in this situation. I have 3 PANS children, and I have had doctor's, teachers, family and friends try to tell me that it had nothing to do with any sort of infection. Wrong! They did not see my child get better within 48 hours of starting an antibiotic or see them deteriorate within 3 days of stopping an antibiotic. In my house we call antibiotics "antipsychiotics" because that is how they work for my kids. You need to see a PANS specialist. You will get validation that what you know in your gut is correct and you will get your child on a treatment path toward healing. You may have to travel...most of us do, but it is worth it to get the right treatment for your child. Read as much as you can on PANS and be armed with information for those ignorant statements. You may want to get some articles for the teacher who obviously needs education. The pandasnetwork.org site has some great references. Best of luck. Keep fighting for your child.
 
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

What frustrates me is what they are teaching in medical school. I have a nephew who is in medical school. At our last family gathering he told me he didn't think my daughter could have lyme because we live in the south and he had learned that it was practically impossible to get it anywhere but in the NE. I told him what he had learned was CRAP! Oops, I sort of let my frustration show in front of everyone. Oh well, won't be the first time if he keeps talking that nonsense.
 
Dedee

I just got results for my 3 children back over the past week. I have read and studied until my brain hurts. Amy Yasko's book is very helpful and it's a free download on the internet. Also, she has several free online video's that are both helpful and confusing at the same time. If you go to her forum (you have to become a member), there is tons of information there you can read also. I have found that watching her videos and reading the information there has helped me. Also, LLM has been a great resource.
 
Dedee

We are Myco P warriors also. Been fighting it for 2 years. I think we may be about to win this battle. What are the IgM titers? It will take a very long time to see IgG titers drop. We saw nothing on IgG for over a year either. What we saw first was a VERY gradual decline in IgM. The first year my daughter took Zith, then she took Biaxin. When we started seeing an LLMD, they put her on Minocycline and Cefdiner. She had a huge herx from that but her IgM titers really started to decline after that. We did that combo for about six months and then they wanted to switch her over to Septra & Amoxicillin. Ended up she couldn't tolerate Septra and we were never able to get her up to the optimal dose. We later found out she has a SNP that prevents her from metabolizing sulfa drugs. So currently dd is on Zith, Rifampin, amoxicillin. In January, her IgM titers were in the high normal range for the first time, but her IgG levels were still high. This was the first time though that her IgG levels ever read anything other than >5, so obviously we are headed in the right direction.
 
So what you need to look for is trending in the IgM titers because that indicates the status of the current infection. You may need to consider a different antibiotic combo. How are her symptoms? Is she doing better? If you aren't seeing any difference in symptoms then I think you absolutely should think about different antibiotics. Best of luck.
 
Dedee

I am a fellow frustrated Vanderbilt parent. I wish I could have spared you that time and energy. We live in the Nashville area and have 3 PANS children. There is no one in this area who will be able to help you. There are a couple of practitioners who are listed as LLMD's or PANS physicians but I can tell you they are no where near "true speciality", that you will get by traveling. We have seen Dr. M in Florida several times and Arial95 is correct she is conservative but I will say she did get us IVIG for my daughter. She only wrote the recommendation letter. We ended up doing it locally through one of the integrative practitioners we use in Nashville. The Nashville Practitioner is good and understands PANS somewhat but I still have to be the guide on most things. She doesn't treat Lyme and didn't even want to test my daughter for lyme. I had to insist on it and then I had to find an LLMD out of state to treat my daughter. But she was helpful with getting the IVIG done and she has helped with some other PANS related issues when we couldn't get out of state.
 
I have been my kids medical director. I decide which physician they need to see and when. If I think they need testing, we make a trip to Florida and see Dr. M. She is great for testing and digging for the problem. When I knew we needed serious treatment, I found an LLMD. When I thought the kids needed a little something more we headed south again to USF for their wonderful CBT / ERP program. It was a life saver. Again, I also have a local practitioner who is PANS literate that supports our treatment and knows we use specialist out of state. She is willing to learn but I think she realizes she isn't on the same level as the others yet. Even though she didn't believe in the whole lyme testing thing she has been supportive since we got the results and started treatment. We haven't had to use her in quite a while though. Lastly is our pediatrician, she recognizes that the kids have PANS, knows we use specialists out of state and is available for the routine things. She is a believer, but by no means knows how to treat. Anytime we go to see Dr. M or any other specialist we ask them to send our Ped a letter explaining the treatment plan. I feel it is the respectful thing to do and keeps her in the loop.
 
I have heard really good things about Dr. Rao in Texas. That might be a good place to start with your testing. Then you can see what you are dealing with. If you end up with lyme or myco or both you may want to consider an LLMD closer to home. Dr. B may also be a good place to start with testing. Again, if you end up with lyme or myco, I would absolutely switch to an LLMD. If you have any questions, feel free to pm me.
 
Dedee

Most of the PANDAS specialist will tell you that just because you don't have high strep titers does not mean you do not have PANDAS. Many kids simply do not have elevated titers. It doesn't mean that they don't react to strep, only that their titers do not rise. Some non-PANDAS / PANS educated physicians will say that this means they don't have PANDAS/PANS. Absolutely not true. It's simply a difference in the response of the immune system. If your child is showing an abnormal immune pannel this may very well explain the lack of immune response. Hopefully you will get more answers with the results of the labs you just had done.
 
Dedee

I will have to say that I agree with much of what LLM is saying. Unfortunately, much of this is trial and error. Sounds terrible to say out loud when discussing treatment of our children. I have 3 PANS children. They all fall on three different places on the continuum (if you will). My oldest is strictly a strep responder. He doesn't get worse with a cold or virus, only if he get's strep or someone in our family gets strep. I have investigated the possibility of lyme with him, even did a trial period of treatment for lyme and got nothing, nada, zilch in the form of a response. Clearly he is what we initially believed....a PANDAS kid. My middle child responds to strep and the flu but not small viruses. His lyme test is boarderline even by ILADS guidelines. He has shown some improvement on lyme treatment but it's not clear if it's because he also had Mycoplasma and he cleared the mycoplasma while treating the lyme. So the LLMD says it's possible he is just a PANDAS kid that got mycoplasma or maybe he does have lyme. We are still on the fence with him as he is not my most significantly ill child. My youngest daughter is severly ill. Her strep titers have never been extremely elevated, only slightly. Since her initial exacerbation her mycoplasma titers have been elevated and her first lyme test was through Igenex and was positive by ILADS guidelines. So each child can be different and you have to make your observations as a parent, and go with your instinct as to what works for your child. Sometimes we make mistakes and go back to the drawing board. But most importantly to remember is that usually the parents are the best judge of the situation. We may all be doing something slightly (or not so slightly)different from the next person in terms of how we are treating our kids but it's still the right thing for our situation. Best of luck to everyone on this path.
 
Dedee

Well if they have not been responsive to PANS, I would go ahead and start looking for another doctor. What you want to know is what the IgG and IgM levels are. The IgM shows active infection and the IgG indicates past infection. However, you can still have active infection if only IgG is elevated if you continue to see it rising and not falling. If they are saying it is positive then most likely your son has both elevated IgG and IgM. That most definately causes PANS symptoms. Myco is a stealth pathogen that has the ability to hide dormant in different areas of the body so he doesn't necessarily have to have respiratory symptoms to be carrying the infection. It is also very hard to get rid of. Your doctor will most likely want to give you one treatment dose of Zitromax and that's it. Problem is that it takes anywhere from 3 months to 2 years to clear chronic myco. Most doctors are not up to date on how to treat Myco p. You should find an LLMD. They know how to treat myco. My daughter showed some improvement on Biaxin but it wasn't until an LLMD started her on combination antibiotics that she really started to improve. Do your research. There is much out there by Garth Nicholson. He is considered the expert on Myco p. Don't fool around with a regular doctor. You won't get what you need. JMHO.
 
Dedee

I would check with the school system. If there is a medical reason for her to be out of school, she should be able to be out without any problem. My son had to have tonsils out one year and we had no repercussins. Really, lots of children are out of school for several weeks. Your child has a physical condition. Your daughter needs to understand this as well. This is her body reacting to an infectious process. Once the infection is eliminated she will feel better. She is old enough to understand the simple explanation. In kindergarten my son understood that when he had strep that the chemicals in his brain weren't in the right amounts and it made his brain think strange thoughts, but when the strep went away his chemicals would go back to normal and his thinking would get better. Sometimes he liked to tell that to his friends and they thought it strange but at least he understood it. Anyway, my point is that you should really try to talk with the school officials about taking the stress off of you and your daughter. This is a terrible position for your family to be in. I am sorry for what you are having to go through.
 
Dedee

Oh my gosh! You poor thing......and your poor little girl. That sounds absolutely horrible. I don't know how you keep from just turning around and going back home every day. When everything started for us my daughte had horrible seperation anxiety and terrible anxiety about school. We had many days where she couldn't go to school and many days we had to force her to go to school. Finally we got a letter from her pediatrician and filled out the papers for home bound schooling. This is different from home schooling. This says your child has a physical condition preventing them from attending school and the school is responsible for sending out a teacher to the home to work with the student. In our case my daughters teacher was going to come to the house 3 days a week for 3 hours after school was over. Turned out my daughter only missed a week of school so we didn't end up utilizing it but it was great to know we had it if we needed.
 
Honestly, I wouldn't worry so much about school right now. It really is not so significant in the grand scheme of things. It's kindergarten, there is no reason why she shouldn't graduate. She should be able to miss a couple of weeks with you working with her at home and still do just fine. Your doctor should be able to give you a note. For goodness sakes, this poor girl is suffering. Once my pediatrician saw how my daughter was acting out in the office one day, she would write me a note for anything. You are working in survival mode right now. You just need to get through this acute episode and when things are better you can pick up where she left off. I really hope things are better for you soon. Keep us updated.
 
Dedee

Oh my gosh! You poor thing......and your poor little girl. That sounds absolutely horrible. I don't know how you keep from just turning around and going back home every day. When everything started for us my daughte had horrible seperation anxiety and terrible anxiety about school. We had many days where she couldn't go to school and many days we had to force her to go to school. Finally we got a letter from her pediatrician and filled out the papers for home bound schooling. This is different from home schooling. This says your child has a physical condition preventing them from attending school and the school is responsible for sending out a teacher to the home to work with the student. In our case my daughters teacher was going to come to the house 3 days a week for 3 hours after school was over. Turned out my daughter only missed a week of school so we didn't end up utilizing it but it was great to know we had it if we needed.
 
Honestly, I wouldn't worry so much about school right now. It really is not so significant in the grand scheme of things. It's kindergarten, there is no reason why she shouldn't graduate. She should be able to miss a couple of weeks with you working with her at home and still do just fine. Your doctor should be able to give you a note. For goodness sakes, this poor girl is suffering. Once my pediatrician saw how my daughter was acting out in the office one day, she would write me a note for anything. You are working in survival mode right now. You just need to get through this acute episode and when things are better you can pick up where she left off. I really hope things are better for you soon. Keep us updated.
 
Dedee

I am so sorry. I know how you feel. I am so proud of you for not caving under this pressure. This is a terrible situation to be in. Not many people understand a raging child on a plane (except PANS parents). You are doing the right thing by making a plan. I agree with the previous poster.....I say just do whatever it takes to get through the situation. Block out everyone else and concentrate only on your family. Don't worry about what she wears. It won't kill her. The most important thing at this point is getting her to the doctor. Even if it's in her PJ's. You are doing a great job in this very difficult situation. Keep up the good work. Let us know how it goes. Keeping you in my thoughts and prayers. Best of luck.
 
Dedee