momcap

My 3 kids have taken nystatin for the past 6 months along with antibiotics for lyme/bartonella. I don't think they have experienced any side effects. Nystatin is mild. It coats the digestive tract, and is not absorbed into the blood stream. It's safe for long term use. I've read of people using it for months and even years, particularly in the autism world. Yeast continued to be an issue for one of my boys with stomach aches, urinary problems, and silly/goofy behaviour. We had to step up to diflucan. Diflucan is absorbed into the blood stream and is a much stronger drug. But it has a higher risk of side effects, because it has to be processed by the liver.

That's a tough one. We desperately want our kids to have normal lives, or as close to it as possible. But at what price? I didn't really have the options you have, because I have 3 boys, now ages 5, 6 & 8. AND all 3 kids carry strep. DS8 was in constant exposure no matter what I did. So I didn't bother trying to protect him from other germs. But looking back I would have tried harder to eliminate some exposure. I babysit other children in my home and I think that really contributed to the amount of illnesses he suffered through (PITANDS). Especially the toddlers who don't remember to cover sneezes, and wipe their runny noses with their hands. I'm cringing now just thinking about it. Now that DS8 is doing well I avoid others when I know they are sick. He was exposed to illness this past week and I'm still holding my breath. I'm developing an OCD fear of germs myself. But he does go to school (we homeschooled most of last year) and I know he's being exposed to germs daily. We have a pretty extensive supplement program that offers support to his immune system. It might be worth consulting with a naturopath, or another professional who could help you in this area. For what it's worth, I would have cancelled the Friday thing too. Especially when a PANDAS specialist is telling you it's the right thing to do right now. It sucks, but IMO it's the lesser of 2 evils at this moment.

I can't count how many times DS broke his bedroom window, his brother's window, the playroom window. It started when he was 3!!! One time he put his hand right through the window and had some pretty serious cuts. I hear your "pity party" and I sympathize completely. You need a safe place to vent where people can listen and really get it. I can't imagine how difficult it must be to have to work at the same time that all of this is happening. Hang in there. You will get to the right doctors and you will get the help your DD needs. You're doing an amazing job so far and she's lucky you're her mom! My DS8 raged non-stop for the entire month that he was on Augmentin. I don't know if it was a terrible herx or if it was a bad reaction to the medication. We were working with Dr. T and we didn't know he had lyme at that point. As soon as we stopped the augmentin he calmed down. But then we tried a month of Biaxin and he raged again. Only this time he got strange rashes, fevers, and grossly swollen joints. That's when we realized it was lyme - no history of tick bite, we're not in a lyme endemic area, and we had no clue! But his lyme test came back positive and he's responding amazingly well to lyme treatment. He's gone from non-functional last year and missing most of grade 2, to functioning well, caught up academically and making friends this year. He's not the same kid. He also gets extremely agitated on bactrim. I don't know if these meds are doing a good thing by hitting the infections hard, or if it's just a bad side effect of the meds. But either way, we have to be able to survive during treatment, so we made changes to different antibiotics that he tolerates better. Also, having a good detox plan has helped tremendously - we use some herbal detox combos from Nature's Sunshine.

We use a 5 billion capsule of s. boulardii each day as preventative, along with at least a 100 billion probiotic. Seems to be working, after 6 months on high-dose combo abx.

This is one of my main concerns too. With OCD as the main criteria I never would have thought my DS had PANDAS/PANS, and I never would have pushed our docs in this direction and demanded the relevant tests. He didn't have motor tics, only vocal tics. But he fit EVERYTHING ELSE, so I pushed for testing which was positive including very high ASO and positive Cunninghams. And it was only AFTER recognizing PANDAS that we grew to recognize his OCD. He hid it so very well. I realized after the fact, that he showed signs of OCD at least from 15 months - when he stripped off any clothing that wasn't green. We just thought he was incredibly strong-willed (which he is!) and really loved green. But it was a short-lived episode, and other strange episodes followed. Now that he is starting to feel better he talks about "when I had PANDAS I used to do ..." and tells us about all sorts of OCD things he was doing that we never even noticed. For instance - I used to touch everything with my left hand if I touched it with my right hand. I used to spin every time I crossed a line. Etc. He was sooooo hyper (ADHD, hypomanic) and always moving, that watching him touching things and spinning just seemed like hyperactivity. I did not see the patterns. Now that he's able to talk more about it we are finding out that much of his defiance was driven by OCD. For example, he is extremely possessive and unable to share, but this is because of a fear of contamination with others' germs. We had no idea. We are realizing more and more that germaphobia has been driving much of his negative behaviour, which came across as defiance and outright meanness. I guess there isn't room in a paper like this to go into the details of how to recognize OCD in a young child, but it would be helpful if there was some reference. Before experiencing PANDAS, when I thought of OCD I thought of severely disabled persons who could rarely leave their homes because their rituals made it impossible to function normally. I never saw the more subtle, but in some ways, equally debilitating, symptoms in my own child until I became better educated, and even then I missed so many of them.

My child never fasted for bloodwork. I would call the lab and confirm that your child needs to fast for the required test.

We get 150 mg capsules too.

There's lots in your post I can relate to with DS8. "Demon eyes", oh ya, I know exactly what you mean. DS's pupils were so dilated at times that they looked black. I called them "cat's eyes". When his eyes looked like that he had a wildness in his expression, that you could say looked "possessed", even if his demeanor was calm. DS also had 2 episodes of trichotillomania - VERY similar to your story. One day he had a tiny bald patch on the back of his head. He finally admitted to pulling it out when he was lying in bed at night. Then several days later it was larger. I hate to tell you, but it takes a loooooong time to grow back in if it's been plucked to the root. Ugh. I don't know what triggered it for DS, and it hasn't happened again (it's been a year and it's finally filled back in). DS was on prophylactic amoxicillin for PANDAS at the time, and we did not change anything. He was not being treated for lyme yet, and I just chalked it up to yet another strange OCD/PANDAS symptom. So I wonder if this has nothing to do with the things you've added lately. Perhaps it's a coincidence, or an exposure to strep, or ??? If it is related to anything on the list of things he takes I am also leaning towards the Cats Claw. I don't know much about it, but my experience with artemisinin has been pretty benign. Maybe my boys don't have babesia, but they do/did have several of the symptoms. They didn't react at all to the artemisinin, even thought they have had pretty severe herxes from other things. I asked my LLMD if that means they don't have babesia and she said most people don't herx with artemisinin so we should continue until 2 months after all babs symptoms are gone. I hope you find some answers and your son feels better soon! I'm glad he's already made so much progress!

I voted no, my PANS DS8 does not get migraines, or complain of headaches at all. He has lyme and chronic strep. When he gets an acute strep infection (fever and positive throat swab), he complains that his brain feels weird, feels cold, feels like it is shivering, etc. But it doesn't hurt. ??? DS6, who has some PANS symptoms (but not a PANS diagnosis), had chronic migraines that I always associated with strep. I wondered if he had strep in his sinuses. But that's just me guessing. He was a strep carrier and ALWAYS swabbed positive, along with elevated ASO. He has lyme, which could also have caused the migraines. Within a few weeks of starting combo high dose abx for lyme, his "migraines" went away. But he also finally cleared the strep and his ASO came back to normal. He's the only one of my kids who finally has a normal ASO since they all got scarlet fever 3 years ago! He hasn't had a migraine in 6 months. So I don't know if his trigger was strep, lyme, or something else infectious. All I know for sure is combo abx cleared his migraines. Yay!

Did you see the video recently posted on the Facebook page for "P.A.N.D.A.S. - P.I.T.A.N.D. (P.A.N.S.) Awareness Ribbon & Research Support"? The daughter talks about some of her symptoms, and the mom says they were symptoms people would look at and sometimes think of schizophrenia. I wonder how many PANDAS parents would say their child's symptoms sometimes resembled schizophrenia?

I thought you might be interested in this study, showing that borrelia infection persists in primates after antibiotic therapy: http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0029914

Sorry, I don't know the research you are referring to, but my PANDAS/lyme DS8 gets paranoid and self-talks when he's off antibiotics. When he has a really severe exacerbation it does seem somewhat schizo-like. I'm interested in hearing about those links if anyone posts them!

DS8 raged non-stop on augmentin. We stuck it out for one miserable month and then had to stop as we were afraid he would end up in a hospital. I don't know if the Augmentin was really killing something and causing a long herx, or if it was just a side effect of the med itself. Either way we couldn't do it. He had similar difficulties on Biaxin, but with improvement after 2 weeks, which seemed more like a true herx. He also rages on bactrim and it doesn't let up at all. Now that we are working with a LLMD, we are adding things slowly and weaning up as tolerated, and switching meds that are not tolerated. We have a pretty heavy detox plan as well, which we feel really helps him tolerate things he didn't tolerate before. Does Dr. B have him on anything for detox? If it is herxing the detox should help a lot.

My DS8 was also misdiagnosed with ADHD when he was 6. I had been looking for help since he was 3, and I had no idea what was going on, but I knew it was NOT ADHD!!! He went on to be diagnosed with mood disorder (nice way of saying bipolar), and general anxiety disorder. He also has a severe ramp up of symptoms with every/any illness. I tracked symptoms, behaviour, and illnesses on a calendar for almost 2 years before I found out about PANDAS. DS does not have any motor tics. When he's severely stressed (usually at school) he does have vocal tics. I don't know if they are true vocal tics, or more of an OCD repetitive thing. But they do seem mostly uncontrollable and they are very disturbing to others - shrieking, squeaking, beeping, chicken noises, hooting, etc. Sometimes he will get stuck on a word and repeat it hundreds of times. We tried Risperdal, which didn't really help. He had a script for Clonodine that I never filled because by then I found out about PANDAS. When we initially treated for PANDAS he had a dramatic improvement on abx, and we couldn't believe it. But he could not sustain the improvements. We went on to treat with higher dose, stronger antibiotics (augmentin and then biaxin), and instead of getting better he got new symptoms - swollen joints, rashes, fevers. We went on to discover that he has lyme disease - something we knew nothing about. Today he is being treated for strep (ASO has been elevated for 3 years!!!), borrelia (lyme), and bartonella. He's improved so much I think it's fair to say he's not even the same kid anymore. Last year he was unable to attend school, was attending a juvenile bipolar clinic, and was supposed to go to a special school for children with emotional/mental health difficulties. Today he's in a regular grade 3 classroom, excelling academically and making strides socially. Finally we have answers, and HOPE! In answer to your question - YES, it does sounds like PANS. Don't give up on peeling that onion! There are many infections that can cause PANS - strep, mycoplasma, lyme & co-infections, mono, etc. Many of us are finding out that our children have more than one. Do you have a good doctor who can look into all of this?

There are 2 conflicting views on lyme disease - IDSA and ILADS. This doc is following IDSA guidelines. I think most of here on this forum subscribe to the ILADS view of lyme. It would be worth your time to research both views and decide for yourself. Also, you might want to PM philamom. Her DD was on 11 months of antibiotic therapy and then had a positive lyme blood culture test. This test cultures the borrelia spirochete directly from your blood sample, so there is no false positive. Lyme survived 11 months of antibiotics in their case.

Same here. DS8 never cried. He would scream, yell, shriek, and show signs of anger, but not sadness. He would even make wailing sounds, almost as if he was imitating someone else crying. Then sometimes he had periods of sadness, but it was an empty, hollow, depressed sadness. No tears. We later discovered he has lyme in addition to PANDAS, and 2 months into lyme treatment he started crying. Real tears! Real sadness! Now his emotional responses are more "normal" and more varied. He doesn't go straight to M-A-D about every little thing. His mood is still very labile and he still has a long way to go. One doctor we saw years ago, said that we had to help him find his way past the anger to the tears in order for him to heal. Blah, blah, blah. This was a medical doctor and he did nothing medical to help. It sounds like your DD is tough! Her strong mind will help her get through all this. I wouldn't be surprised if she starts crying as she starts healing. But then again, not everyone is a crier. It could just be her personality.

Hugs - I have the exact same questions and fears. I don't know the answers. We even tried antipsychotics and they didn't help. DS was on risperidone and then seroquel and was no better at all - perhaps even worse. DS on antibiotics is almost completely well, but regresses immediately when the meds stop. I don't think it makes sense to be lyme driving symptoms that quickly. He has tested positive for lyme (WB IgM & IgG), but I think it may be more of an underlying infection right now, with the majority of symptoms being driven by something else. We are assuming bartonella, or some other co-infection. I would REALLY like to know exactly what is plaguing him. We spent 4.5 years going to every type of doctor under the sun. So I feel like we've explored every possible avenue available to us, and now we have to go with what is working because nothing else has worked. It's a rock and a hard place, for sure. I don't discount the dangers of long term antibiotic use. I tried to keep everything very natural and wouldn't even take a tylenol before all this happened. I even had my babies at home with a midwife so I wouldn't be tempted to take pain meds when I was in labour. Now I practically have my own pharmacy in my kitchen cupboard. Sheesh! But I won't stop looking for answers, even while we are doing abx.

Welcome! Hopefully someone here will chime in with a recommendation. You might have better luck posting this question on lymenet.org under their flash discussion, seeking a doctor section. I hope you find someone right away. Good luck!

DS8 reacted very badly to many medications and supplements. He did well on low dose (prophylactic) amoxcillin so we kept him on that for almost a year. But when we tried to stop it, he was right back where we started. It was just a bandaid, but not making the problem go away. He reacted badly to Omega-3, probiotics, multi vitamins. He raged non stop on Augmentin. He raged on Biaxin. He gets really ODD and aggressive on Bactrim. When we started working with our LLMD she put him on high dose amoxicillin, since it was tolerated. Then we slowly added in other abx, and a pile of supplements (including Omega 3 and probiotics). I was scared, but amazingly it is working. I think it is the combination, and the order things were added that has helped him. We still can't stop abx without going back to square one, so clearly he is not healed yet. But he has improved dramatically and our LLMD says minimum 12 months and probably longer. We're only at 6 months. Have your docs tried other abx? One of the possible side effects of Bactrim is psych/mood problems in children. One of my kids can tolerate it, the other 2 can't. There are other options. We've had to switch abx several times, and it continues to be a bit of trial and error. I don't know anything about mino, but I'm just wondering if a different antibiotic would be tolerated better at a higher dose? Edit - I should also add that our LLMD started everything very low dose and has us wean up slowly. We go ahead AS TOLERATED, and back off and make changes when things are not tolerated.

Have you ruled out other infections? DS8 does well on certain antibiotics, and terrible on others. He regresses almost immediately and very severely when we stop antibiotics. We went on to find out he has lyme in addition to PANDAS, and possibly bartonella as well. I am CDC positive for lyme and never knew I had it. One of my symptoms was Raynauds. I hope your DS doesn't have lyme, but it might be worth asking a few questions over on the lyme forum. JMO. I really hope you find some answers and options!

The new test was important to me, because I wanted proof for my PCP. He was supportive for the first 6 months of treatment, based on symptoms and positive Igenex WB. But now that our LLMD wants to add some heavier abx, he's suddenly freaking out and questioning everything. And some of his questions had me freaking out too. He wondered how the kids could still have lyme after 6 months. I gave him some literature, but wanted a positive test to prove what I'm saying, and to hopefully win his support back. That, and I wanted the test for my own peace of mind - just to know for sure that we are doing the right thing with this aggressive treatment. But after 2 weeks off antibiotics I now have no doubt we don't have another choice right now. We HAVE to treat this, whatever it is, or I will lose my son. I'm not at the point of switching to herbals (yet). He's seeing an integrative LLMD/ND, and has lots of herbal support, but given his amazing positive response to antibiotics, I think we need to continue on this route until it's no longer an option, or he is well. There is NO way I"m taking him off antibiotics again in the near future. That was a nightmare!!! I will, however, keep A-BART in the back of my mind, and will discuss with our LLMD if this might be useful in a combo approach. Thanks for the suggestion!

We had DS8 off antibiotics for 2 weeks, hoping to do the new borellia blood culture test after 4 weeks. Sadly, we didn't make it. It was a complete nightmare. We took him off on a wednesday. The very next day I got a note home from school about his aggressive behaviour. The day after that I had a phone call from the principal saying, "Has something happened? He's not okay." Well, we stuck it out for 2 weeks, during which time he became incredibly focused on his old obsessions and compulsions, germaphobia ramped up, we saw a return of ODD and aggression. He even became paranoid and violent. It was terrifying and I started having flashbacks of what life was like before we started lyme treatment 6 months ago. At the end of 2 weeks I couldn't let him out of my sight, for fear of what he might do. It was not a difficult decision to put him back on antibiotics. ON Wednesday he started back onto amoxicillin. I weaned him back up to his full dose (3000 mg/day) over 3 days. Yesterday and today he's back! He's calm, happy, helpful. He's not the same kid. It's freaking me out. Lyme wouldn't respond this quickly, and we haven't even added back his lyme abx yet, just amoxicillin. Is this bart (which we believe he also has)? Is it PANDAS/strep (He still has elevated ASO, although it is finally dropping after 2.5 years)? Could it be something else? I really wanted to do more testing this month, to get a better picture of what we're dealing with, and to get my PCP back on board with what we are doing. Maybe there are still some tests we can do with him on antibiotics. I just don't know what to test for. Any ideas on what this could be?

Hi hugs, Welcome! I can really relate to your post. I have 3 boys - one diagnosed with PANDAS, and 2 with less severe PANDAS-like symptoms. We have dealt with almost all of the symptoms you listed for your kids, and I share many of the symptoms you yourself have. I started out at the PANDAS forum, and antibiotics helped my PANDAS son a lot, but not 100%. I still had more questions than answers, and wondered about some symptoms that were not explained by PANDAS. That led me here, and like you I recognized so many symptoms, but was completely overwhelmed with no idea where to start. Now we are 6 months into lyme treatment (high dose combo antibiotics and integrative supplements) for my 3 boys. The result - PANDAS DS8 is a completely different kid. Well, right now he's off antibiotics for 4 weeks for a new test, and he's a nightmare, but prior to stopping antibiotics he was doing so well. He no longer had any symptoms of pdd, mood disorder, and anxiety disorder. His verbal tics were gone. OCD and germaphobia were almost gone. He caught up academically. He was sleeping normally. Really, it was a miracle. His teacher, principal, our neighbours, and everyone who knows him can't believe the difference. DS6 had chronic congestion, migraines, and photosensitivity. They are gone. DS5 was always sickly, constantly getting infections, no stamina, etc. In the last 6 months he has not had one single infection. He only had 1 minor cold so far this fall and winter. He went on an 8 km hike with us, and didn't need to be carried. He couldn't have walked 10 minutes before. So please know that there is hope! I was so overwhelmed I could hardly function and had no idea what to do next, nor the energy to do it. But somehow we've made it this far, and now we have a plan and hope for the future. You will too! Your cat bite, and foot symptoms do suggest bartonella. I agree with LLM that a bartonella test and lyme western blot would be a good place to start. There are high rates of false negatives with these tests though, so don't let a negative result discourage you. If you have the symptoms, and the treatment is helping, then don't worry so much about the testing. These are all clinical diagnoses - and tests can only lend weight to the clinical picture. That's why I think it is most important to see a good LLMD. They can guide you on what tests are worthwhile, but they will treat based on your clinical picture and response to treatment. You will probably have to travel. Good LLMDs are few and far between. We travel 12 hours each way to ours!!! Yikes! But my kids are getting better and that's the most important thing. You can do another post here asking for a recommendation and giving the general areas you would be willing to travel to. Or you can check lymenet.org. They have a flash discussion with a section for seeking a doctor. Or you can contact ILADS and ask for a recommendation. Not all LLMDs will treat kids, so that might be an important consideration.

TBI - tick borne illness (or infection). DS8 was on biaxin for PANDAS and we did not know he had lyme. His body reacted with a severe herx - fevers, rashes, rage, very swollen knees, and 1 elbow swelled up like a balloon and turned purple. It was terrible, but led us to the discovery that he has lyme disease. Doxy is a common drug used for lyme disease. If your DS has an underlying lyme infection, or other tick borne illness, you could potentially see an increase in symptoms or new symptoms that you were not expecting.

I keep telling myself when we get better I will remember this forum and come back to post our success story from time to time, and encourage others. But really, how many days will I spend on the forum when all is well and I'm not looking for answers and support any more? This forum is (mostly) a place for people still looking for answers, healing, and hope. It's probably not the best place to look for success stories. JMO. That said, we are 6 months into lyme treatment and the improvements in our DS8 were nothing short of miraculous. Family members, principal, teachers, neighbours are using words like "not the same kid anymore" and it's true. Last year he was non-functional. Eventually he couldn't attend school and missed 88 days of grade 2. He had severe germaphobia that prevented him from showering, using a toilet, brushing his teeth, etc. At times he was unable to leave our home. He had near constant verbal tics. He was attending a juvenile mood disorders clinic, and also had generalized anxiety disorder. He was supposed go to a new school with a special class for kids with severe mental health issues. It was a nightmare. Then 2 months into high-dose combo antibiotics to target lyme and bartonella he was completely different. His OCD and germaphobia were all but gone. His brain literally turned back on and suddenly he could read and write, and was caught up academically in a regular classroom within a few short months. Verbal tics were 100% gone. He was relaxed, calm, even happy. We were seeing his smile again. He was making friends and going to their homes (first time ever). He started taking music lessons. In short, life was becoming normal for the first time since we could remember. Then our family doc got really concerned about the high-dose long-term antibiotics and begged us to try him off for a few weeks and get another opinion. We agreed since we wanted to try the new lyme blood culture test anyway. Within 24 hours the "wheels fell off". It's been 1.5 weeks since stopping antibiotics and we're not sure if we can make it 4 weeks to do the new test. Our LLMD said it would take a minimum of 12 months to treat him, and probably longer. We were only 6 months in when we stopped last week. We continued all supplements and yeast meds, so now I'm 100% sure it's the antibiotics and not something else that was healing him. I'm very anxious to get back on track with our LLMD and get my son better!