New to PANDAS

Hi Karen, Yes, that's what's so frustrating - not knowing what is the cause, but I think if you are smart about the diet and supplements, a lot of them will help a number of issues (like leaky gut, yeast and possibly salicylates) Sometimes it seems that there are so many things that you have to avoid - it's like - what is there left to be able to eat. I try to use common sense and avoid what I can and minimize other things rather than cutting everything out. You mention the coconut - are you using oil or giving coconut milk? I now cook with the oil, and add the coconut milk (or juice) to other juices. It's most convenient to buy it in cans, but sometimes I buy the young coconut and punch a hole in it, drain the juice. Have enzymes worked? I think I may have tried once in the past and it gave her diarrhea. Pat Hi Pat - We are actually using laurcidin (http://www.lauricidin.com/). I give my son some granules in the morning and in the evening. As for the enzymes, I believe there has been some improvement in his food sensitivituies. I'm not entirely sure about the KidZyme product - I believe I read that probiotics and enzymes shouldn't be given together. After the holidays, I want to investigate this and possibly change to giving him a separate probiotic and separate enzyme product. The enzymes may have given him diarrhea because perhaps he had too much at the beginning? Just a thought. I know with the KidZyme, I started very slow and built up over two weeks to the recommended dose. Karen

Hi Pat - I definitely agree with you that there is a connection. I recall reading early on when my son first got PANDAS that the strep actually lives in the stomach (who knew!) and that contributed to the leaky gut syndrome. As you mentioned, the antibiotics also contribute to the leaky gut. I believe then that the leaky gut syndrome is what causes the salicylate sensitivity in many of the PANDAS kids, which results in behavior issues. So, then the hard question becomes - what is causing behavior changes/issues - the leaky gut/salicylates or the PANDAS?? Personally, I had no idea prior to PANDAS that the stomach and brain were so connected. As I read on some website - "Heal the gut, heal the brain!" - and that is so true. We are using the daily coconut use instead of antibiotics, along with giving my son Kidzyme to help heal his gut. We are watching his salicylate intake. So far so good. We'll see how this holds up over time. Interesting stuff! Karen

Hi Michele - OK, now you are scaring me! LOL Just out of curiousity, did you use anything like Lauricidin when your son was first off antibiotics??? I'm curious how helpful it will be to prevent new strep infections. Of course, it's one of those things where you'll never know what you don't know - if he doesn't get strep in the next month, would he have gotten it without the Lauricidin - who knows?? Our pediatrician is Dr. William Wittert. However, if my son's PANDAS returned and got worse, I would probably take him to a specialist, like Dr. K, at that point. Our ped. is definitely not a PANDAS expert or specialist. I will be eternally grateful to him for his quick thinking, but if things came back and got worse, it would be time to take him to a PANDAS specialist. Also, just curious, have you been experiencing any of the food sensitivity issues? Karen

Hi all - We are located in the Chicagoland area. Honestly, it was just "dumb luck" that our pediatrician knew about PANDAS. We have been going to him for 4 years - he was recommended to me by a coworker who has used him for her two daughters. He is a teaching pediatrician and he always has interns working with him, so I think that forces him to be up to speed on the current literature. He also mentioned that he has two other PANDAS patients, both with severe tics, not the behavior issues our son had. As to long term treatment - right now we are taking it one day at a time. He has only been off the antibiotics for a little over 2 weeks. I dread of course the next time he is exposed to strep. I fully realize that we may end up putting him on daily antibiotics - we just want to try this for now and see what happens. Make no mistake, though, our pediatrician was no help when it came to dealing with the secondary issues, like food sensitivity. So, all of that we had to figure out and take care of on our own. Antibiotics were only part of the answer. Michele - interesting about the behavior that started last week with the cracking knuckles that you noticed. I think we put our kids behavior under a microscope now! When my son was in the midst of his PANDAS episode, he kept asking us what time it was - over and over again. Keep in mind, he is only 4, so prior to that he never had been all too concerned about what time it was! It was very weird. He scared me half to death over the weekend when he asked me in the car what time it was! Turns out I think he really just wanted to know what time it was - LOL. Karen

Hello all - I first want to thank each and every person on this forum. Unknowingly, you have been an invaluable resource over the past two months. I am hoping that I can "pay it forward" by telling our story that may help someone down the road. The story begins on July 7 of this year. I received an email mid-morning from the daycare director at my 4 year old's school asking if he had a bad weekend, because he was behaving very uncharacteristically for him - he had hit both of his teachers that morning, something he had never done before. The rest of the week, things only got worse. He was having raging tantrums and lashing out at friends, teachers, the director, etc. A common theme that he kept repeating was "I don't want anyone to talk to me". Up until then, he had been a social typical 4 year old and had loved school and his friends. I went through a rundown with the director, teachers and other parents to try to find out if anything had changed in the classroom - new routine, new student, new anything. Nothing had changed. The daycare director was starting to go down the path of getting a child behavior psychologist involved. I had a hard time believing, however, that my son woke up on July 7 and decided to turn into Satan's child. I truly believed it had to be something medical, so I called our pediatricians office on July 10 and desperately asked to get in the next day for a consult. I think the receptionist felt sorry for me, because I was so upset by this whole situation. When I told the daycare director that I was taking him to his pediatrician, she looked at me like I had 3 heads, because he wasn't "sick" at all. So, on July 11 we saw our pediatrician for a consult. One thing I remember about that visit is that our normally calm and somewhat well behaved son was bouncing off the walls in his office. He couldn't sit still for anything. Our doctor went through the exact line of questioning I had gone through - changes in school, changes at home, etc. He examined him for any signs of sexual abuse (very creepy!). After everything was fine from that, the very first thing he says to us is "has your son been exposed to anyone with strep throat". My first thought was 'I'm telling you that my son has turned into Satan's child over the past few days and you are asking me if he has a sore throat???" I thought he was nuts. He went on to tell us about PANDAS and the overnight behavior change that can occur. He then went out to talk about lyme disease (we have an open wetlands area behind us with ticks) and several other medical conditions, including seizures, that can cause behavior changes. So, he ordered a whole slew of blood tests and an EEG. In addition, he did the throat swab in his office, but it came back negative. It was a long weekend and his behavior didn't get any better. To top it off, I got very sick that weekend and felt horrible. That Monday, I went to the doctor and found out I had strep throat (throat swab tested positive). When I came home from the doctor, I had a message from the pediatrician that the throat swab they had done on Friday had cultured over the weekend (not sure that is the correct terminology) and it was positive. He prescribed omnicef for him and wanted to see him again in a few days. He started the omnicef along with a probiotic and the very first day was scary. He normally sleeps like a log, but work up twice that night screaming. He also developed a fever and had a few episodes of needing to go to the bathroom to urinate soon after urinating, but nothing came out. His behavior improved tremendously, though. When we went to the doctor again, he told us the results of the blood work were all normal except for the strep. He had strep antibodies in his blood. He was fairly certain this was PANDAS and put him on omnicef for two months. I should mention that during this time, my son had started making a clucking noise with his tongue that he never made before. He definitely wasn't doing it to get attention - I would observe him and he would just be making this noise almost unconsciously while going about his day. After reading information online about PANDAS, I realized that this was probably a tic. My husband disagreed with me and said it was just a 4 year old making a new sound, but I know when he makes a sound to get a reaction from us and this was completely different. Interestingly, the tic went away about a month after it started. I began to research PANDAS like a crazy lady. I wanted to learn everything about it. This helped, because within a week after starting the omnicef, I observed that he turned extremely hyper after having some grapes one afternoon. This led me to learn all about the stomach issues and "leaky gut" that can occur from the antibiotics and strep that lives in your stomach (who knew strep was in the stomach??!!). My son was definitely reacting to salicylates, so we had to change his diet to take out high salicylate foods. I found the Feingold organization and their information has been extremely helpful. I wouldn't say we are 100% Feingold, but we use it as a reference. I was very concerned about damage to my son's brain from the PANDAS and also concerned about his hyperness, which hadn't been a part of his personality before. So, I started him on Kid's Calm and fish oil. The fish oil seemed to make an immediate difference in calming him down. I know this is getting long, so I will try to wrap up! After the two months on omnicef, we had a decision to make - whether to leave him on daily antibiotics or not. I had strong concerns about that and so did his pediatrician. So, what we are trying is taking him off the antibiotics and having him come in once a month to have his blood tested for strep antibodies - in between visits, watch for behavior changes. After we stopped the antibiotics, I started him on Lauricidin. I figure that "natures antibiotic" may help to keep him off the need to take daily meds. Incidently, when he went for his EEG in August, it came back with a slight abnormality - nothing to worry about. But, when we met with the neurologyst, the first thing he said to me was that we have an extremely smart pediatrician. He said most doctors wouldn't have thought PANDAS and wouldn't have ordered all the tests he did. After reading other PANDAS stories, I am SO thankful for him - it was literally the first thing that came to his mind. So, my son is doing extremely well now. He started Pre-K at his school and is doing wonderfully. His teachers and the daycare director are amazed by PANDAS - nobody had ever heard of it before, but now they are very much aware, as well as other parents. Our only remaining "issue" is his food sensitivity. I'm hoping that improves over time, but we are able to control it with diet. In summary, he is taking the following each day: KidZyme - 2 capsules before breakfast and dinner (probiotic and enzymes to help heal stomach) Kid's Calm - 1/2 tsp in morning and 1/4 tsp at night Carlson's Fish Oil for Kids - 1/2 tsp in morning and 1/4 tsp at night Lauricidin - 5-6 pellets in morning and at night Freeda Children's Chewable Multivitamin - 1 at night Again, many thanks to all of the wonderful people on this forum. I know for a fact my son would not be doing as well as he is today without your stories and experiences. I always tell people that our pediatrician pointed us in the right direction and was a lifesaver, but the internet and people's stories completed the picture and enabled us to steer ahead. Karen