Dedee

I'm missing the part where this doesn't fit the PANS criteria. ODD, rage, high sensitivity, frequent urination, anxiety......Seriously, this fits my daughter to a T. Also, going to admit that as my third PANS child I had some denial going on as well with dd. You need to start trying to find an infectious source. I would bet something is hiding in there somewhere. Dedee

Me too...I will be there! Dedee

It is a common misconception that Mycoplasma is a lung disease. In reality, mycoplasma can live in many different body systems. Therefore, you do not need to have respiratory symptoms to have mycoplasma infection. Do your research on mycoplasma. It is a very tricky stealth pathogen much like lyme and can hide out and remain dormant for years before activating. As far as treatment, it is very difficult to get rid of. We have been treating my kids for nearly 3 years. My son's titers went into the normal range only to rise again nearly a year later. His LLMD said that isn't unusual for mycoplasma because it is very hard to truly get rid of. My daughters titers are dropping but her last titers a few weeks ago had gone back up again. You should definately check titers and treat aggresively if positive. Biaxin was the first antibiotic that we saw results with for my daughter. Dedee

I know it's different with teens and every situation is different. I have done things I thought i would never do with my raging daughter. However, I do believe I would draw the line with him taking your things. I would tell him that once he returns what is yours then you can talk about him getting his things back. There can be no discussion about anything untill your things are back in your possession. My daughter has some really big rages also. We have been to USF 3 times to work on her rages. I used to think she couldn't control her violence, but I have since learned that she is able to stop the violence with incentive. I would not allow him to manipulate you. JMHO. I understand this is a hard situation. Best of luck. Dedee

If you can find the article that would be great. Thanks.

I know that IgG represents past infection and IgM represents a current infection but I was curious about viruses......My daughter got her viral panel back and the HHV-6 IgG was high at 1:2560, the IgM is normal at < 1:20. I understand that this indicates a past infection, but since the IgG level is so high is it possible that this is still on going or just very recent? Anyone with experience with HHV-6? Dedee

Yes this is legal in all 50 states. It is the CBD from Hemp and can be ordered from bluebird botanicals on the internet. At least that is where most people are getting it. That is where you can get the highest % of CBD. The CBD does not give a high. That is the THC which is not present in this oil (has to be less than 1%THC). What isn't legal is to get the CBD from the marijuana plant. You must live in a state where it is legal to have medical marijuana in order to do that. We are using it for my daughter also. So far it seems to be working pretty well. It is having some calming effects but I'm not using it at that high of a dose yet. CBD has high anti-inflammatory effects as well calming effects. There are lots of studies out there to google that shows the benefits in autoimmunity and cancer. Google it ...it's very interesting. Dedee

Yes, you usually need more than one antibiotic. We use minocycline, rifampin and cefdiner. Dedee

I'm coming.....Can't wait! Dedee

One of the things that helped behavior (rages, anger etc..) was lithium orotate. It's a low dose supplement not the same as lithium prescription for bipolar. But it really helped my daughter. Start off with about half a capsule then work up to full capsule. My dd now takes it twice a day. Dedee

I have been through this crap with these kinds of Physicians for over 12 years. Hold your head up and hold on to your resolve. Your are the Mother and you know your child best. Dust off your pants Sister and move on! You are a good Mother and you will find the right Doctor for your child. You may very well have to travel. My first child manifested 12 years ago and we ended up traveling 12 hours to find a Doctor. It is very validating when you finally find a specialist who understands your child and understands the issue. It's worth the effort. Get an appointment with a PANS specialist. Don't mess around with main stream medicine anymore. Hang in there. You are doing the right thing. Dedee

Mycoplasma testing is done by having a Mycoplasma IgG and IgM titers ran. You can do this through any lab. The only differences in labs is whether or not they give a numeric value. Some will only give a positive or negative while others will give a numeric value. The numeric value is preferred so that you can follow and see the value rising or falling. I know that quest does numeric values as that is where we get ours through. Once we had ours through another lab that only gave us a positive. I think it was labcorp, but please don't hold me to that, It was a long time ago. Dedee

I have a family member who is asking if I have any medical proof to show she shouldn't vaccinate her baby. Does anyone have any articles that show the link?

I would just be very cautious. Don't go crazy worrying, but stay alert to signs. You know what you are looking for. I am a Mother to 3 PANS children and I can remember the day I realized each had the symptoms. I am definitely not saying that is whats going on here and you shouldn't rush to judgement. But at the same time, I also know that children will withhold information if they think it will upset you. In addition, if they are having one bad thought there are often others they aren't talking about. I'm not telling you this to alarm you. I'm just going on my experience and being honest. What ever is going on, you can handle it. You are strong, smart and capable. I know you will figure it out and do the right thing for your children. Best of luck. Dedee

I have two children who have been treated for Myco P for 3 years off and on. Trying not to be a conspiracy theorist here but this really is a very difficult bug to get rid of. Dr. Garth Nicholson is a great reference but also if you get the book Lyme Co-Infections by Bruhner, about half the book is on Mycoplasma. It's a great reference. My kids had to take two antibiotics for over a year in order to get their titers in the normal range. Then even after that, my son's titers elevated again about another year later. He had never gone off of antibiotics as we were treating him for Lyme. We just noticed that he was having increased anxiety and he was having bad depression so I asked them to run Myco titers again and sure enough his titers had doubles since we had checked them the year before. The LLMD is not sure what caused him to re-activate. This is a good example of how you can think you have gotten rid of the Myco but it will flare back up with no explanation. My daughter's IgM finally came to the normal range after about 2 years of combination antibiotics. Last check in December, her IgM is still normal. The IgG is still elevated. Still treating her for Lyme, bartonella, and anaplasma. Myco can be very dangerous. It should be treated very aggressively and titers should be checked every 6 months at least, even after you have completed therapy to make sure it hasn't re-activated. It has a very high re-activation rate. Especially in those treated for less than 9 months. Much depends on the persons immune system. Good luck all. Dedee

It was three years ago for us. My daughter had the flu mist and 48 hours later had her first full blown exacerbation. I knew immediately what it was. She hasn't been the same since.

This is the generic name for Rocephin which is used to treat many Lyme patients including my son and daughter. It has worked well for us. After reading this, I suspect it could be the GABA / Glutamate issue that could be in play. My daughter has always had issues with high glutamate. Dedee

What types of testing have you had done? Have they only tested strep titers? You should be testing for other infectious triggers as well. Has he been tested for Mycoplasma? If he isn't getting back to 100% it may be because he has another underlying infection that is not treated by your current antibiotic. Many PANS kids also have Mycoplasma infection and are not aware of it. I would encourage more testing for viruses and at a minimum Mycoplasma. Dedee

Well said Hopeny.....

SF_Mom said it very well and I agree. We have been to several experts. Have been to a PANDAS clinic and thank goodness for it. Now we are working with an LLMD. This is highly individualized when it comes to treatment and outcomes. I don't have answers but I do have recommendations. You need to read and educate yourself as much as you can. Read books and articles on lyme. Read everything you can find on Mycoplasma. Read all the recent articles on PANDAS / PANS. Then you are in a place that you can make an educated decision on what seems right on diagnosis for your child. Am I saying you have to diagnose your own child. Well, yes in a way I am. Each physician will tell you what they think. And you could get as many different opinions as physicians you see (you know what they say about opinions). You need to take the information from these physicians and see what seems to make the most sense and most logical based on your childs history. For instance, if you do an Igenex lyme test and it comes back with several lyme specific bands showing indeterminate on both the IgG and the IgM and you have a physician telling you that is flat out a negative result, you will be educated enough to know that an indeterminat band (to an educated LLMD) is the same as a positive band. Now, because you have done your homework and you know about lyme you know it's time to leave this physician and move on to one who knows what they are doing. You also need to know when to stop digging and just treat what you got. This illness requires parents to educate themselves. Thank goodness, that's what we are all here for. To help one another. We are all in different places, but we can still help and support one another. Best of luck. Dedee

I agree with Rowingmom. It is possible it could be your antibiotic. Bactrim is often not tolerated well because it is a sulfa drug. Those who have CBS mutations do not tolerate sulfa drugs well. We tried my daughter on bactrim also and kept thinking she was having a herx reaction, but after 5 weeks we finally switched the antibiotic and her symptoms stopped. Something to consider.

We are considering changing LLMD's. I do like our LLMD but would like to be more aggressive about looking for other contributing factors and she isn't big on that. I found out Dr. DeMio is an LLMD only two hours further than what we drive now in Columbus Ohio (also has an office in Cleveland Ohio). I wondered if anyone has experience with him. I know he also treats autism. Appreciate any input. You can PM me. Thanks. Dedee

Sorry, Cleaned it out.

I will add our experience and my advice for what it's worth. My daughter also had her first explosion of symptoms immediately after the flu mist. She is my 3rd PANS child so I knew what it was immediately. I had know idea that the flu mist would cause a PANS flare however. I only wish I had somone like Dr. L to see as quickly as you did. In regards to the medication and symptoms......Our experience with steriods is that they are very helpful with Neurologic symptoms in regards to anxiety, OCD symptoms, separation anxiety, raging, etc during a flare. However, when it comes to tics the steriods actually make them worse. Once the steroids stop, the tics will actually decrease and many times stop all together, but during the days of taking the steroid the tics will be heightened. We have found a "sweet spot" if you will in dosing where she can tolerate the steroids and it doesn't make her tics too bad but will still improve neurologic symptoms. I'm a Nurse, so I am really bad about playing around with dosing. I think you will find that once you start the decline on the steroids the tics will certainly improve if not stop all together. Best of luck. Dedee

My daughter is being treated for Lyme, bartonella, Myco, & Anaplasma. When she gets a virus, or cold her symptoms explode. We use a steroid burst or taper (depending on how bad symptoms are), to get her through those times. While she is on the steroids her tics actually increase, once we stop the steroids they gradually decrease and sometimes stop completely. Dedee