Dedee

I'm not sure if you are working on methylation or not or if you have done any genetic tests or not but I will just throw this out there and you can do with it what you will. I know that some Physicians will recommend glutamine for the gut but many do not methylate properly and glutamine will end up causing an increase in glutamate which causes neuroexcitablility. I would try GABA instead. Also, NAC, metylated B vitamins, and tumeric are good for some but extra methyl donors can cause problems for those with COMT mutations. Supplements are not a one size fits all protocol and what works for some causes issues for others. Just a thought. Dedee

I only have a minute and didnt get to read all the responses. I am sure you have gotten some great advice. I only want to respond to your initial post. My second son went through exactly what you describe right down to the excessive worry that kept him awake while worrying about not sleeping. He literally worried about world peace and believed somehow that he should do something to change things. The insomnia and urinary issues were huge. The constant rushing thoughts would not stop. Long story shorter......this ended up being a result of a long term Mycoplasma P infection. We treated him for strep, but found out many many months later that he also had chronic Myco P and then months later found out he had lyme. So, call it what you will......my guess is that somewhere there lurks an infectious process causing inflammation and wrecking havoc on that body. Best of luck..... Dedee

Oh so you are on flagyl......well that is a bit of a different story. Flagyl does seem to stir up the worst of the worst so to speak. In that case, I actually might consider taking a break from the flagyl and keeping with the rest of the antibiotics. Flagyl is known to cause huge herx reactions. Is he on other antibiotics? If this is the case, I think I would most certainly think about just staying the course with antibiotics but maybe just not flagyl. That can always be added in later. Most LLMDs use that when the patient is toward the end of treatment or at least more emotionally stable anyway. Think about it...... Dedee

I'm not sure what you meant that you still have the Myco P. Do you mean the titers are still positive? In regards to the negative Lyme western blot, just because the test says it is negative does not meant that it is negative. You need to do some research and educate yourself on Lyme disease. You can't take your Doctor's word when it comes to Lyme. Few Doctor's (including Dr. T) are truly trained in the proper treatment of Lyme disease. You need to see an LLMD (Lyme Literate MD). Lyme is a clinical diagnosis and can not be ruled in or out based strictly on a lab result. Lyme tests have a very high false negative result. You must see an LLMD in order to rule out Lyme. Also, if you are dealing with Mycoplasma and are having difficulty getting rid of it you should be aware that it can be a co-infection of lyme. LLMD's are trained to treat Myco. Both my Son and Daughter had Myco for a long time and we could not get rid of it until we started seeing an LLMD. They know how to deal with these stealth pathogens. Myco is very hard to completely eradicate. It takes months to years of the right combination of antibiotics. You need to find the right physician asap. At a minimum, see if you can get a prescription from your ped for some biaxin while you find the right doctor. This will hold things off (hopefully), until you can find and get into a good LLMD. Best of luck. Dedee

I Love this idea. I pray for PANDAS / PANS parents every day. Add us too... Dedee

I don't want to state the obvious here but what seems to be missing in your arsenal of treatments is a good old narcotic. I have been a nurse for over 20 years and when things get to that point you really have to pull out the big guns. You gave her flexeril which is a muscle relaxer and that may help with the muscles that by now have started to tense around her neck, but she really needs an old fashioned narcotic pain reliever and go to bed. Do you have anything like Lortab, or Percocet? Don't think because she is 14 that she can't handle it, she can. My 15 yr old son has been having migraines since he was 12. We can usually manage with Ibuprofen if we catch them early, but sometimes if it goes too long he has to have something stronger and straight to bed in a dark room. I realize this may not be a migraine, but the concept is the same. She needs something to stop the cyclic release of catecholamines which is causing this problem (regardless of the trigger). That is what the narcotic will do. I can tell you, If I had a headache for over a month, I would have taken a big old pain pill by now. Dedee

I don't know how desperate you are or if you are willing to travel, but when we were having real eating issues with my oldest son, Dr. Storch referred us to Rogers in WI. The number is 800-767-4411. They will do phone screening. They understand PANDAS and offer medical treatment as well as the psychological treatment. It is an inpatient treatment center and Dr. Storch recommends it highly for OCD related anorexia and eating disorders. Never hurts to call.

There is no rhyme or reason as to what intrusive thoughts get stuck in the heads of these children. I will tell you that it is not unusual for children to have intrusive sexual thoughts. There isn't a lot of discussion about it because many people are embarressed about it. When we have had our kids in therapy or in CBT they always ask about this and tell us it is very common. I don't think I have any advice for you except to seek professional help from someone who is experienced in this type of thing with kids. I would continue Lyme treatment as I am sure this is the root cause and make sure to use detox. I'm so sorry you are experiencing this. It seems it's always the ones that are shy about those things that end up with this type of issue. Sort of like their worst nightmare playing over and over in their head. OCD is like that. Ugg......what a terrible thing for a child to have to live with. Very unfair. Dedee

My daughter frequently complains of feeling tingly all over. She is being treated for Lyme, bartonella, and recent lab work showed positive for anaplasma and also Low Thyroid. So, take your pick. Dedee

My 18 year old son flaired when he was 6. He is now picking out colleges and has his pick due to his good grades and excellent ACT score. I haven't had to do one thing for him. He is complety independent and motivated. He wants to get his Masters in Molecular Biology so he can do medical research some day. I am so completely proud of this young man who at the age of 6 could not go outside, eat off of plates, or stop washing his hands because of his extreme fear of contamination (among other things). There are no outward signs of OCD, tics, or anxiety now. He is a wonderful, smart, sweet young man. Now, I'm working on his two younger siblings. I know I will get there with them too. The Lord is good. Dedee

My older sister had children who were grown before we discovered PANDAS / PANS. Looking back we both now realise that her children probably had PANDAS also. One of her grown kids now has a child that has symptoms. We are trying to convince the Mother to have titers done and talk to the physician. She isn't convinced. I see symptoms in several of my neices / nephews. You have to have lived with a PANS child to be able to recognize it so easily. I have lived with three. I know it when it raises its ugly head. Dedee

I would say you are right. The positive reaction to antibiotics is one of the strongest indicators that your are dealing with PANDAS / PANS. As Dr. Murphy says, I have seen children turn around much more quickly on antibiotics than on any psychotropic medication. She is a very wise woman. Dedee

Yep

Awe shucks girl......we did have us some good times didn't we. I have to say, I felt very connected to so many people there. It was a wonderful experience on so many levels. Can't wait for the next one. Thinking about leaving the husband at home next time. I think he was a little overwhelmed with all the estrogen. Still, it was good for him to hear all the information. Think there is another conference in Atlanta in Feb. Going to start saving my pennies for that one. Dedee

It was an awesome conference! Had some great conversations with some of the researchers and speakers. It was also a very emotional and bonding experience. My husband got to go with me and I think one of the best things he brought home was a validation that our daughter does indeed have lyme. There was never any doubt from me but I think he has always held back some reservations until after the Lyme presentation. Not anymore. It was good for him to hear some of the things he has always heard from me also come from other Mom's and from the speakers. I am so glad we went. Dedee

I agree with the behavior modification. We had to do the three week intensive treatment at USF to get my daughter to stop attacking and hitting me. On another note, I will tell you this, we did the 23andme and started working with methylation. Worked for months trying to fix this or that mutation. I was being ever so patient with the methylation pathway and frankly getting no where fast. I peaked in on the support group for Dr. Amy Yasko from time to time but I only take a part of that to heart as it really is a lot of money put in to her supplements. However, I finally did do a urine and hair test that she offers and found out that my daughter dumps lithium and has very low lithium levels in her hair (about the only way to test lithium levels). Without appropriate lithium you can not transport B12 into the cells in addition to other things. I'm not talking about prescription dose lithium. I mean very small sub clinical doses of lithium that you would have normally. With my daughter's mutations she has a genetic pre-disposition to naturally excrete lithium while she has a heavy bacterial load (lyme). Since we have been working on this, her defiance, anger and violence has started to disappear. Not completely gone but I would say about 80%. We are going very very slowly because going too fast causes detox and a worsening of symptoms. There were some other interesting findings on the urine that we are working on. All I can tell you is this is the best place my daughter has been in three years. I can't say she won't regress next week, but the last month has been wonderful. I think some of the things Yasko does is helpful. Just have to be careful not to fall into the money pit. Dedee

All I can tell you is this was some of the symptoms my daughter had when she was in her first flare. She was positive for Myco p. Later we found that she was positive for Lyme and bartonella also. It finally went away after she was treated with antibiotics for about 6 months. I think it indicates that immune system is being activated by something. Question would be what of course. I'm not sure why the doctor would run only IgG titers for anything. You need IgM titers to test for an active infection. IgG only tells you if there was a past exposure. Dedee

I just went to the site and signed in. The site is working fine. At one time, I was unable to access the site from my work computer because I didn't have the appropriate updated browser. When I used another computer with a newer browser it worked fine. That could possible be the problem. Dedee

Here are some instructions: 1. Log into 23andMe and go to the tab that allows you to download raw data (top left on your screen). Download onto your hard drive. 2. Go to http://geneticgenie.org/ and follow the instructions for running your data thru the app. Currently, the app is free but there is a request for a $10 donation. There are two profiles you can run - the methylation profile and the detox profile. The methylation profile is most popular and most researched but it’s good to have both. If you can only do one, do methylation for now. 3. Print the reports. I do a copy onto a word file and save to my computer. 4. You can use other apps that that will give similiar analysis. One is http://www.mthfr.net or, www.mthfrsupport.com. Hope this helps. Dedee

You can go to the 23andme website and it will show you a sample result. That might help you. There is another test you can do with Dr. Amy Yasko that will give you the same information. It is more expensive but you get the benefit of her consultation with it. I did not choose to go this route because of the cost and choose to do my own research after the fact. I just wanted you to know that it's an option for those who prefer to have the research done for them. Knowing what I know now, it's possible I would have just saved up to do this for my daughter. Maybe not for the rest of my family who are not as sick. Everyone is different with different needs. Just want you to know your options. Dedee

You have gotten great advice already. I can only add my experience. We originally got the MTHFR test and tried to treat it alone. We had about a one month honeymoon period and then things regressed to where they were originally. After that we did the 23andme. It has taken much research on my part to learn about each individual mutation. The ones I thought would be the problem for my daughter were actually not the ones that have caused the major issues. I have learned more from some additional urine and hair testing. I think we are finally on our way to healing. I am hesitant to say this in the event that things should turn bad again. It takes more than just testing. It takes research, and trial and error. I was on the edge of putting my daughter on an SSRI. Still haven't completely ruled it out. But hopefully if things continue as they are we will see some futher improvement. Methylation can be very helpful but just keep in mind that it's a journey not a destination. Things are ever evolving in this world and it can be frustrating at times. Be patient. Best of luck. Dedee

Evidently this is a pretty common way to test the immune system. We had a couple of doctor's who wanted to do this with my daughter.....Give the pneumoccal vaccine and see what kind of response she mounts. They wanted to do it because her Streptococcus Pneumoniae serotype titers (Not Strep A titers) were low on some initial immune testing. We elected against it mostly because my daughter had reacted poorly to vaccines previously. I think it is a way to try to prove a need for IVIG if that is the way you are going though. Dedee

I wouldn't get your hopes up that your regular doctor will be much help. Most doctors will blow you off when it comes to this type thing. They will tell you there isn't an association between infection and tics or behavior. This is simply not true of course and there are many studies to back it up. Quite simple the majority of the main stream medical community is ignorant when it comes to PANS and arrogant when you try to discuss it with them. Your best bet is to make an appointment with a PANDAS / PANS specialist. I sounds like you definitely have symptoms that correlate with infection driven tics and anxiety. Fortunately it hasn't gotten to a point that it is life altering yet. Unfortunately, it could become extrememly serious at any point. That's why you need to get in to see someone as soon as possible and get ahead of this before it gets out of hand. You are smart to stay on top of it and a good Mother to keep researching even when the doctors are not encouraging. Keep pushing and get your daughter the help she needs. Dedee

How wonderful! So happy for you and your family! Hope you have a nice relaxing weekend filled with smiles and laughter. Dedee

Well let me say how sorry I am that this is happening. I know that sick feeling when you suddenly realize that you are heading down that road to h*** with yet another child. Makes you want to throw up. I remember laying on the floor in my closet, in my bedroom and crying (so no one could hear me) when I finally accepted that my daughter (third child), also had PANS. I didn't know how I could possible go through this a third time. Yet here we are. So you will make it and you will do a great job because you are already armed with more information than you were when you started this journey with your daughter. I think you should go ahead and get your son tested for infections and viruses. Something has started this processes and even though it isn't an obvious thing it's there hiding. Seek it out and attack it before it damages your son. This is the best advice I can give based on my experience. I did not do this with my daughter. There were several times when she was little (4-5 yrs old), when she acted very OCDish and like a PANS child, but I was so busy with her brothers who were more demanding at the time that I didn't persue it. She even had Pneumonia several times with behavior changes after. Again, I just blew it off as terrible toddler behavior even though I really knew better. Then when she was 7 years old, she got the flu mist and within 48 hours she was a complete mess. Full blown OCD, anxiety, seperation anxiety, tics, the whole nine yards. The horse was out of the barn and there was no catching it at that point. We have been chasing it for nearly three years now and never been back to base line. Upon testing, obviously she had high IgG and IgM Mycoplasma P titers and must have had for years and it was activated by the flu mist as was her chronic lyme (according to her LLMD). In my opinion, you would do yourself a favor by trying to find out what might be lurking and causing problems for your son now. This is not going to go away (JMHO). Might as well take control and start the good fight now. You know the drill. I don't mean to sound matter of fact or uncaring. On the contrary, my heart breaks for you. You don't deserve this. But I know you will get through it and you will do a fantastic job of fighting for those kids. Being proactive is the best approach. Again, this is all my opinion based on my sordid experiences. Possibly your experience will be less challenging. I hope so. Praying for you. Dedee