Dedee

What area do you live in? Also, if you don't mind me asking, who is your LLMD?

I am so sorry for what you are going through. You say that your son has had PANDAS for 5 years. It would be helpful to know what sort of testing he has had done. My daughter had IVIG twice before we got a diagnosis of Lyme and bartonella. She had only been on single antibiotic therapy. It frequently takes combination antibiotic therapy to see a difference. My daughter was positive for Mycoplasma IgG and IgM and was later diagnosed by an LLMD with Lyme and Bartonella. My first thought for a child who has been on several types of antibiotics and still suffers after several years is that there is a deeper more virulent infection involved than just strep. I would suggest seeing an LLMD for more testing. They are very knowledgable about the use of antibiotics for the treatment of all sorts of infection. Dedee

You all know about the struggle I was having with my son a few weeks ago, the terrible depression and perfection OCD......Well, I am happy to report that he seems to be improving. Yes, it took two different Psychiatrist and many tears but he seems to be coming out of this horrible episode. Needless to say the first Psychiatris we saw (who was paid for by insurance), was absolutely no help. Spent more time filling out the insurance form than talking to ds. I was so frustrated that this was all our insurance had to offer in terms of outpatient mental health services (frustrated, but not suprised). So, I finally gave in and made an appointment with one who was highly recommended but doesn't take insurance. I called his office and after explaining the circumstances, they gave us an appointment the same week. Of course I loved this non-insurance Psychiatrist. He was really good with my son. He believes in PANS and while he doesn't treat, at least we weren't debating the topic. He worked with my son on his OCD issues and also changed his medicine. My son has been able to start one of his school projects that he was previously to afraid to begin because he was so afraid of not making an A on the project. This was a huge accomplishment. He even says he feels better. Whew, what a relief. Now, about my daughter.......She was having a flare because of a recent bad cold (not related to ds flare which started months ago), I was using Motrin which was helping a little. I had a steriod prescription for me and decided to do a taper with my daughter based on reports I have heard on this board. I know this isn't probably the best thing to do without a physicians supervision, but desperated times and all....I did 20mg for 6 days, then 10mg for 6 days, then 5mg for 6days, now I am starting the 2.5mg. We have seen good results. This is the first time my daughter has ever gotten oral steriods other than just a steriod dose pack and when she got IVIG. I am just wondering what will happen when we stop the steriods. Will she get bad again? The other issue is this.....Even though my daughter is much better with the steriods, and she has been better prior to this illness, no matter what we do she always (and I mean always), has lingering OCD. It just seems that even when she gets all the other stuff under control (rages, moods, anxiety), there is still this under lying OCD. So I just wonder if I shouldn't just give in and get her an SSRI. I have held off because I worry about her gaining weight and then having body image issues, then you end up with an anorexic teen (am I going to far here). I have one son who gained on an SSRI and another who hasn't. Both were helped with their OCD. My oldest son took SSRI's for several years and when he went off he did loose the weight but he will always have the memories of growing up as a "chubby boy" (this is what he tells me). It's very hard for me to know what to do for my dd. I know that she really needs it. Her OCD seems very refractory to everything else. She has been to USF three times and she has the knowledge and tools to work through things, but most days are still a struggle for her and frankly it wears on the whole family. The last thing I want to do though is trade one problem for another. Thoughts??? Opinions???? Experiences???? Dedee

I am a little confused about your "LLMD". You say he is afraid about "getting into trouble". From my experience, this does not sound like a typical LLMD. Most true LLMD's have a good grasp of what testing needs to be done and is able to put the results together with the clinical picture and come up with a diagnositc plan. "Getting into trouble" isn't their focus. They have their own set of guidelines from ILAIDS and are experienced in diagnosis by clinical presentation. Perhaps you should consider another LLMD. I would definitely suggest more testing. Also, don't worry that you have never had a positive strep swab. With titers that high you can feel sure that there is strep somewhere. Did they ever swab his sinuses? There are many places where strep can be that physicians do not place a swab. A PANDAS specialist would know this. You desperately need an GOOD LLMD or a PANS specialist. Your son needs long term antibiotics, potentially combination antibiotics and the sooner the better. You do not want to put this off. Time is the enemy here. Stay strong and determined. You can and will get your son back if you act quickly and definitively. You are on the right track already. Keep up the good work. Dedee

I think you were very gracious. And honestly, the previous poster is probably right, I get my feathers ruffled, but some people do really just want to help and honestly have not idea how. So you can take it in that light, that they care about your family and want the best for your son. At least they aren't saying they don't believe there is a medical component. Hopefully she will take the hint and back off. One of my sister's had just been a by stander in all of this with my kids until she actually had to experience my daughter in a rage by herself without me around. She never doubted me before but wasn't quite my biggest supporter either. After that experience, she all the sudden was full of advice for things I should be trying. Well of course it was things we had tried for years. We had already pulled all those rabbits out of the hat. It was hard for me not to say "Gee, why didn't I think of that YEARS AGO?" But she suddenly realized what I went through daily and in her heart was trying to help. Somehow, I managed to keep my mouth shut. Not an easy task for me. Good luck with your little sticky situation. Dedee

Oh, I love that. Some people have no social skills. Really, I want to know how you handled the situation. How rude...... Dedee

Very interesting Smarty. Still don't quite know what to think. But I am really on the watch now.

My daughter does seem to get better with motrin but not to the same extent. The RNA will last a while depending on how much you use. We are only using 5 drops three times a day right now. Many times on a school day she will only get it twice. I think the last bottle lasted about 6 or 7 weeks. As I said my daughter got very sick last week and everything came crashing in to ground zero. I did something I would only admit here......I started her on a Mom protocol steriod burst. Yep, no doctors order....I had prednisone so I started a steriod burst based on protocols I have heard from other PANDAS physicians (we nurses are bad about that sort of thing). I am so tired of going through physicians and begging for what I want. I already had what I needed so I just moved forward (please, no tomatoes). We are on day 5 and she is responding well. So far most symptoms are fading and she is almost back to her pre-sickness level. This is the first time we have ever tried oral steriods. She has had IV steriods before, so I figured this should be much easier. Please don't condemn me. I have really bad physician fatigue at this point and had a not so great experience at my son's Psychiatrist appointment this week. Just didn't think I could take seeing one more doctor. Ugg... Dedee

LLM - Well that's a good question. For me yes, but that is partially because my daughter is so against taking pills. She doesn't mind the RNA's or other tasteless drops that I can put in water. Now if it has a taste, you can forget it! But the RNA's have no taste and I let her count out the drops herself. I use it 3 times a day. Together with our LLMD we are working on cytokine release. Actually, for most people it may be just as easy to use some of the other supplements such as the tinctures that Buhner recommends but many of those have a bitter taste and that will not work for us. We have been using some of the supplements that Buhner and our LLMD recommend in capsule form but again I am limited on how many pills I am able to get down in a day so I have to pick and choose carefully. The cytokine RNA together with cordyceps has seemed to help. We are supposed to add in Chinese skullcap next. We started with Knotweed and had good results but she lost her taste so we had to stop (this happens in only a few cases). All of this along with the GABA has really turned my daughter around. She is so much more tolerable now. The moods are much more calm and the rages are almost gone. We still have the lingering OCD and she got sick last week so things sort of flared again. I must admit I am still considering an SSRI because no matter what we do we just can't shake the OCD / Anxiety thing. Her moods will settle and rages calm but the OCD is ever present. Ugg..... Nitshel - We get our GABA from Holistic Health. We get GABA Balance. Be careful with which GABA you get. Some people mix their GABA with other supplements that can change the affect it has when taken. Dedee

Honestly we have tried everything. To try to relieve her constipation, or should I say just to get her to have some sort of activity daily she takes (every day) magnesium citrate, vitamin c, Mag 7 (special formulated by yasko to produce BM) and a colon cleanse (yasko's brand). Not to mention between 50-100 billion units of probiotics. This girls has been constipated since I can remember. Literally had problems since she was a baby. I would give her more magnesium but there are so many other supplements I need her to take, I have to pick and choose what it most important. Just wondering if I should switch away from our Klaire brand of probiotics due to the L. acidophilus. I would hate to think I was causing more problems. Dedee

So I read this article talking about kids who take high doses of probiotics. Of course this gets my interest because we give pretty high doses to my daughter who has major stomach problems and chronic constipation. It was talking about D-lactate acidosis occurring when the body is unable to rid itself of D-lactic acid which occurs from the breakdown of high amounts of L. acidophilus. Here is the article. You all tell me what you think..... http://www.mommypotamus.com/popular-probiotic-strain-may-induce-neurotoxicity/ Dedee

LLM has given you wonderful advice. She has a great take on SNP's. The only other thing I would add is that you read the portion in Yasko's book on GABA / Glutamate balance. When I read this section a big light bulb went off for me and we have gotten some great results from Yasko's GABA balance. I do not follow her protocol's completely because as LLM says some of it is too strict for my child and frankly way too expensive. However, I have read her material and follow her website and find pieces of her work valuable. I have tried a few of the RNA's. The one I found most helpful was the cytokine balance. We continue to use it. She used to call it behavior control but what it really does is interfer with the release of cytokines so she changed the name. The RNA's are very expensive so I have to see definitive results to invest in them. Dedee

Nancy, I love the idea of making him complete his work and go to bed at a certain time regardless of whether the work is done or not. This is a great way of giving him ownership of his own pace. You are a genius. This is it's own way of making his perfectionism force him to be timely. It's perfect (no pun intended). I expect using that technique will solve this problem in time. I just love this forum and all of the genius minds that come together here. Dedee

S & S, My daughter is a straight A student and actually reads above her grade level. She also does great in spelling. However, the last two years her reading progress has slowed down and she always complains that she gets headaches when she reads. She was always using my reading glasses saying that it helped her. People kept telling me that she just wanted to wear glasses because her brother had glasses and some of her friends did also. She would also complain that the board was blurry when she tried to read it but then would test 20/20 at the Dr. office. When I brought up convergence to our optometrist, he knew exactly what it was and said that all made perfect sense. I really wish I had said something about it before. It was really when she said the words were moving around that it clicked for me. I didn't put the reading fatigue and the headaches together. From some of the things I have read, this can be pretty common in chronic lyme. I think most of these kids should at least be tested. It didn't take our optometrist that long. He had some special glasses he used and some techniques I had never seen before but he said she was definitely convergence excess. I am so hopeful this helps with her headaches and school fatigue. Dedee

Absolutely, strep can be in your sinuses or other places. Have you had an AntiDNase done? This is very strep specific and will also give you an indicator of your strep titers. If these are both elevated and you haven't been treated you should probably find someone who will take this more seriously. Dedee

My daughter has complained for years that she has trouble reading the board but every time I take her to the eye doctor they say her eye exam is normal. Last year she kept taking my reading glasses to school saying it helped her read. Again, another normal eye exam. Last year I asked her the questions about whether she had trouble with words moving on the page, or missing sentences and she always said no. However, this year when I asked her she said "sometimes". So when I took her to the eye doctor I asked him if he could test for convergence insufficiency. My daughter explained about the headaches and told him the words jump around sometimes. He did a very thorough exam and said she didn't have convergence insufficiency, she had convergence excess. She over compensates instead of under compensates which actually is within the same disorder and causes the same symptoms. So we have ordered the special glasses and hoping and waiting to see if this will help. Amazing how many of us have this same type issue. I found the following article interesting about Lyme disease and convergence issues: http://aoj.uwpress.org/content/56/1/147.abstract Dedee

My daughter had a pretty great response to GABA. I think we have always known that she has a glutamate / GABA imbalance and so I went on the recommendations of Yasko (don't always follow her protocols) and started with 500mg once a day and now she takes it twice daily. Most likely she could handle it three times daily but we are working with blocking cytokines at the advice of our LLMD, so not changing anything else right now. GABA definitely helped with aggitation / anger issues though. Dedee

My daughter had high IgG and IgM Myco titers for two years. We used different antibiotics Zith, Biaxin, and then when we finally went to an LLMD we started Minocycline and rifampin. Honestly it usually takes a combination of antibiotics to make a difference. After about two years her Myco IgM titers started to come into the normal range. We are still treating lyme and bartonella. Many kids with co infections may also be dealing with lyme. It is helpful to see an LLMD and get testing. LLMD's are very helpful at treating Mycoplasma and they can tell you what the chances are that this is the only infection or if there may be more at play. Dedee

I would like to encourage you to stop the bactrim. My daughter is being treated for lyme also. She was also doing fairly well on a combo antibiotic and our LLMD decided it was time to switch and we put her on bactrim and rifampin. She went absolutely crazy. At first I thought it was a terrible herx. So we cut way back on the dose and did all sorts of detox things. This went on for nearly four months. We tried everything to try to hold out since the LLMD really liked this particular antibiotic combo. Finally I said ENOUGH! We stopped the antibiotics, gave her a two week break and started something different. She started calming down after about 3 days. Later, after the 23&me test I found out the she does't process sulfa drugs well. Well, actually that is an understatement! She hasn't reacted like that to any other antibiotics. We have seen herx reactions, but nothing to the same degree. I have heard of this happening to other kids. It's not to say she doesn't need lyme treatment. Just that she can't handle sulfa drugs. It's worth trying. Keeping you in my thoughts and prayers. Dedee

At the beginning you have that it says IgM negative so I am assuming you are showing the IgM results. You should also have the IgG results. Your results should always be interpreted by a physician who is specialized in treating Lyme (LLMD). They will read your results along with the symptoms and give you a diagnosis. The IgM results show activity in some bands that are specific for lyme, but should be evaluated with patients symptoms. You can do a search on this forum for Lyme results and there has been much discussion on how a lyme diagnosis is made. Sorry I don't have much time right now, but I am sure someone will jump in. Lyme is a very complicated illness and you would be wise to educate yourself and come to your own decision based on your personal situation. An LLMD can help educate and point you in the right direction. Dedee

Nancy, I am so interested to follow this thread and find out what works for your son. As you know, I am having trouble with my 14 yr old right now and one of his issues is perfectionism in his school work. He is constantly worried that he may do something to make a bad grade or miss something important in class. What you are describing sounds exactly like perfectionist OCD to me. As usual I think you are right on the mark. From our experience in CBT / ERP he will have to come up with some method to read through a paragraph and not "be allowed" to re-read when he feels that urge. Of course you know this. The challenge will be how to monitor that. The danger lies (from what our therapist says) in this becoming such an obessive trait that he is no longer efficient in his work. Our therapist told my son that when he goes to college he can't be successful if his perfectionist OCD prevents him from being able to complete his assignments in an efficient manner. The concept seemed to make sense to my son at the time. Seems he is having trouble with it again though. This is such a difficult OCD trait to deal with. From the outside it seems like a good thing for a kid to want to do, but really it prevents true progress. Ugg....I'm sorry you are dealing with it. Let me know how it goes. Dedee

Philamom, Yes, it does get very expensive. The entire supplement thing is about to wipe us out. I applaud your effort to find cost effective supplements that meet the requirements. I am interested in what Mayzoo posted. I haven't heard of that brand before but I think I may try it. Dedee

We use the Detox support from Klaire. I think for less than $30 for 60 capsules it's not that expensive. I have certainly paid much more. Klaire also has another one that has 100 billion units per capsule that I sometimes alternate. It is more expensive but still affordable.

Hi Jonny, Terrible thing to happen to a young guy just starting out in life. I will give you my opinion (for what it's worth). I have 3 kids with PANS, one is a strep responder, one is strep and lyme, and the third is Lyme / Mycoplasma / Bartonella. Since you say you got worse after the antibiotics, it's possible that the antibiotics and the illness that you were treating caused a bacteria that had been dormant in your body to be activated. Things like lyme, mycoplasma, bartonella, babesia, and many others can become activated after many years of having no symptoms at all. Physical and emotional stress can do this as well. You should have a more comprehensive work up and be tested for lyme and all the co-infections through Igenex. You should also have a comprehensive viral workup. When you get your lyme results back they should only be interpreted by someone educated in reading those results (LLMD). Do some research on this site on Lyme results and you will get a better understanding on why this is so important. Sorry I can't spend more time posting right now. I'm sure some of the others will jump in. Just want to encourage you to persue more testing. You should not be so miserable at such a young age. Best of luck. Dedee

I always give 600mg to my 14 year old. He is 5'9" and weighs 150ish. For my 10 year old I give 400mg, she weighs about 75lbs. This is the dose our LLMD told us. We give it every 6 hours. Dedee