Dedee

Your problem here may have initially been strep that wasn't caught by a good swab. However, what has caused this to escalate is the flu mist. Many kids get autoimmune encephalitis from the flu mist, especially if there is already a pre-existing issue when the mist is given. This happened to my daughter 3 years ago. I have spoken to many parents who had the same issue after the flu mist. You need to have your child tested for Mycoplasm Pneumonia IgG and IgM antibodies as well as Igenex Lyme test. You need to see a LLMD immediately. Your child would do very well if he got treatment as soon as possible. Dedee

It is so very frustrating when dealing with a flare. Just keep in mind that it takes about 6 weeks for the average flare to resolve (coming from a PANS specialist). So even doing everything right, sometimes we have to give Mother Time its due. Believe me, I know how hard that can be. It is important to use as many antiinflammatory agents that you can. We try to use natural therapy, although I also use ibuprofen when desperate. I have recently started using some oils that have antiinflammatory properties to them. Also, Enhansa (Tumeric) is a good antinflamatory. It is very much trial and error. Just be patient and realize that you are doing a great job. Take it one day at a time. Make sure you are working with a specialist that is knowledgable in Lyme treatment. That is your best advocate. Best of luck. Dedee

We also struggle with the Mycoplasma issue. It wasn't untill we saw an LLMD and started using two antibiotics together that Mycoplasma titers started to go down. Myco is a very bad bug. It can hide in different body organs and because it doesn't have a cell wall acts much like a virus and is very difficult to destroy. It took 3 full years of using 2 and 3 antibiotics together before my daughters titers came into the normal range. You must be very aggressive or you will never be rid of it. When we treated my son for Mycoplasma, we treated him for 18 months and thought he was better because his titers came into normal range. We then decreased his antibiotics and focused on methylation issues. After about 6 months he started having major depression and anxiety again. We checked titers again and they had gone way up. Myco is bad about that. It can go dormant and look like it is cured only to re-surface. This is why it is so important to be aggressive and make sure you eliminate this bug the first time around. Most people do not take Mycoplasma seriously enough. It can cause havoc on the body and the immune system. Also, it can be a co-infection of Lyme. If you are not able to eliminate Myco, you should definitely see a LLMD to check out the possibility of Lyme. They often are seen together. Best of luck Dedee

We use lithium orotate 5mg. We did urine, hair and blood testing. My kids are "lithium dumpers" due to some of their mutations. They excrete much of their needed lithium in their urine leaving them low in lithium. When we started supplementing lithium, it helped a great deal with anger and mood issues. You should start with no more than 5mg per day. We started with half of a 5mg capsule and worked up to a full capsule to prevent any issues. My daughter now takes 5mg twice daily and my son only once daily. I even take it once daily and can tell it helps my moods. I would highly recommend it. It has been one of the best supplements in terms of improvement we have tried over these last 3 years with my daughter. Dedee

This is such great news. Thank you so much for sharing. So is Julie a homeopathic practitioner? I would love to try Buhners protocol, I have read his book, but my daughter is very strange about how medicine tastes and I don't think she would take a liquid at all. I'm not sure how much of the protocol I would be able to follow. We have been using traditional antibiotics for 3 years with minimal resolution. Two steps forward, one step back is our history. Dedee

Nancy, I can not say how happy I am for you. This is so awesome! I have no doubt that he is going to do wonderful in college next year. I can tell you that you will cry like a baby when he goes and your heart will burst with joy and pride and worry all at the same time. You have done a fabulous job with him. I know it has not been an easy road but you have worked hard and now you are seeing the fruits of your labor. This is the pay off for all the tears and frustration. Enjoy your accomplishment. You deserve it. My oldest son went off to college this year. It was the hardest thing to leave him on those dorm steps and drive away. I cried the entire 3 hour drive home. This was my first PANDAS child back when no one even knew what PANDAS was. What a struggle that was. Now he is in the honors program and living on campus doing all the things that normal 18 year old boys do (thats a scary thing). I am so proud of him and all of his accomplishments. It gives me hope that some day my 11 year old will do the same. So enjoy your son's last year of high school. It's a special time and you are a special Mom. Keep us updated on his future plans. So happy for you all. Dedee

From personal experience, my son was on antibiotics for six years and did not become a "non-responder". He stayed on the same dose that worked for him and kept his symptoms under control. When he was 17 we weaned him off and he stayed symptom free. All these children respond differently. It is very hard to make generalized statements. I have 3 PANS kids and they are all different in their presentation, and in how they have responded to treatment. Dedee

That is so awesome. Do you mind sending me a pm to let me know which homeopath you use that skypes? Did you have to do the first appointment in person? Wonderful news! Dedee

What is ketotifen? I tried to look it up and it says its and anti-histamine. Is that what you are giving to help GI symptoms?

I have never heard of that but I read about it and it's very interesting. What brand are you using or did your ND suggest? Sounds like it could be promising. Dedee

If she has been symptom free for a year you might consider weaning and try some natural antibiotics or oils. I would be hesitant to wean without a back up plan for something else. Essential Oils work well for many and are safe when used appropriately. Also, there are several different types of natural antibiotics you can try. It's great that you have had good results. You may want to consider trying something to boost her immune system also to prevent infection. We use bovine colostrum with my son along with other supplements and it has kept him healthy even though he has CVID. Best of luck. Dedee

Powpow, when my daughter took plaquenil she had huge set backs in every way possible. She became almost non-functional. Total age regression, seperation anxiety, severe increase in OCD symptoms, over all anxiety, terrible rage. She is coming down slowly since stopping it. LLMD says its a major herx from cyst busting. I haven't seen her this bad since her original onset. Dedee

We suspect that my daughter has babesia in addition to the Lyme, bartonella, & Mycoplasma. The LLMD has discussed using Artemisinin but we haven't started it yet. She had a severe reaction to Plaquenil a couple of months ago and she still isn't fully recovered from that. Just wondering about anyone's experience with Artemisinin, good or bad. Thanks so much. Dedee

For those who have tried it, how is the taste? It says it comes in packets to mix in water. I'm wondering if my daughter would drink it. She doesn't usually take things that are in liquid form because of taste so I am questioning wheather or not she would take it. TIA. Dedee

A psychiatrist should not be allowed to read labs of a child with infection and immune issues unless they have been trained by another specialist. You should immediately switch Doctors and find a LLMD or a PANS specialist. Do not waste your time with anyone else. Dedee

I am so very happy for you and your daughter. Enjoy your time and your sweet daughter. Good for you! Dedee

I don't have any experience. Just wondered if the neurologist said why he chose methotrexate over rituximab? I am sure there is a good reason. I would be concerned as you are though. Dedee

When we did the IVIG's we got good results. It was only after more illness that she regressed. Also, at the time of IVIG, we had not treated Lyme. She has been on lyme treatment for 3 years now. She also does very well with steriod treatment but I generally have a hard time getting someone to give it to us. I usually have to use the prednisone that I have for my gout. I have to keep the dose lower than most would use so as to not increase her tics, but it does help her behaviors. Also, I spoke to a few of the physicians at the conference in California. We discussed how quickly she regresses with illness. Two of them told me that they thought she would be a good candidate for some of the more powerful drugs out there. I feel we need to be seen by some of the more "serious" physicians. If we are told after this that all she still needs is antibiotics and supplements then at least I know I have done all I can. Dedee

We have an appointment there with Gallentine and VanMeter in August. Someone form this site suggest we try it. I am thankful. I really just hope we are able to get some resolution. Dedee

My daughter has several reasons why we shouldn't use steriods. However, desperate times call for desperate measures right? She has Lyme and she also has tics. In the past she has gotten so bad I would have tried anything. We have used steriods on several occasions. Different lengths of time, different doses, etc..until we have found her sweet spot so to speak. When we go too high on the dose her tics get crazy. The longer we go the worse the tics get. So we keep the dose as high as we can without making her miserable with tics and go as long as we can before they explode (if that makes sense). I admit, it has been purely trial and error on my part and she has been a bit of a guiney pig. But I'm a nurse and I guess I'm more comfortable with that sort of thing than some may be. She is 10 years old (almost 11), and weighs almost 90 lbs. I can give her 10-12mg per day divided into 2 doses and she can go about 10 days. On day 7 or 8 I start weaning, depending on how the tics are and how much prednisone I have on hand. If she starts ticcing badly before then I will immediately start weaning her off. This is really a low dose considering what she could get by guidelines, but it's all she can handle before the tics kick in. It will increase them slightly but not to the point that it bothers her. Another thing is that while she is on the steriods she will increase her irritablilty. Some people think this means that it is making them worse and stop them. Reality is that steriods make the general population irritable. So it's not unusual to see a PANS kid get more moody and even have a few more rages and irritability. This is the nature of steriods. It also makes them hungry and have a hard time sleeping. Again, a natural side effect of steriods. If you tough it out, you will see some nice results at the end. So, JMHO, I think what many people think is a "bad reaction" to steriods in their kids is really just normal side effects that are amplified because our kids already start out with some of these issues in place. It's all about what you can handle and what your child can deal with in order to get the desired effect. Again, this is just my opinion based on my experience. A lot of kids react differently based on their immune system, current infectious processes, etc. You have to make the best decision based on your experience with your child. Best of luck. Dedee

We saw nice changes too when we started the lithium orotate supplement. Are you just doing dairy free and gluten free? How long did it take when you changed the diet before you started seeing changes? We are considering going gluten and dairy free. It's a big step but I have heard it makes a big difference for those with rage issues. My daughter didn't test positive for gluten allergy though. Dedee

Have you ever tried just one but not the other. Could be she can't tolerate sulfa drugs or maybe a huge herx from the mino because it crosses the BBB. If they aren't working though, seems senseless to continue. Dedee

I needed to hear / read this so bad today. While I would love to hear more details on some of the therapies and medications you used. I really appreciate the story as well. Bless you and your lovely family. Dedee

Thanks.

We are considering taking the big step. Are there other internet sites that are helpful? I have a very demanding, high stress job and I do very little actual cooking. I get home late and we usually do quick easy dinners. I can use all the help I can get. Thanks so much. Dedee