momcap

We have used Natural Factors 420 mg softgels (1200mg lecithin & 420mg phosphatidylcholine). You can swallow them, or poke a hole and squeeze it into a smoothie or whatever else. I can't say I really saw any difference in DS, but he had so many other things going on at once, that I don't think it was a fair trial. I started taking them whenever I felt agitated, and it calmed me down, but that could be placebo effect. Bonus - I think it's also good for liver function.

I don't know about input, but here's some support for sure! We started with PANDAS, went on to discover lyme, and now are looking at mold. Antibiotics made all 3 of my kids miraculously better for a year. But 2 out of 3 could no longer tolerate them (stomach pains) and they didn't hold the improvements after they stopped taking them. So back to square one. For PANDAS DS we have decreased abx and added Abilify. After 1.5 weeks we are definitely seeing improvement, but it's too soon to say anything for sure. Meanwhile, tackling mold issues in our 1800s farm house - wow, not fun.

My son got WAY WAY worse on Augmentin. We moved on to Biaxin and that brought major improvements in OCD and behaviour, but worsening of physical symptoms like leg pain. Plain old amoxicillin helped him more than any other antibiotic.

DS9 is starting Abilify tomorrow. 2 mg for 2 weeks, then 4 mg for 2 weeks, then 5 mg from then on. He's 82 pounds. Doc is monitoring many things including glucose and heart rhythm. We have to fill out behaviour questionaires every 2 weeks to document any changes both at home and at school. We will see how it goes. DS had great success on mega-doses of combo abx last year. His behaviour while on lyme treatment was either not a problem at all, or at least very manageable even during herxes! He made huge gains at school, both socially and academically. Symptoms were all but gone, then slowly some symptoms crept back in this spring. In Sept we had to eliminate 1 antibiotic and decrease doses in the others (long story), and behaviour immediately became a major issue again - aggression, violence, OCD, mood lability. He's already been suspended twice and sent home twice from school and is getting very little classroom time at all. Ugh. Yesterday he had a major rage at home. Haven't seen that in 1.5 years. I'm having flashbacks. So now we're stuck with lower dose of 2 of his antibiotics, and adding Abilify. We'll see how it goes. EDIT to add - DS also has fight AND/or flight responses to stressors.

:D :D Awesome! We are also adding Abilify, starting tomorrow.

I also had a bruise the size of a half dollar. It was deep red and strange in colour, and I dismissed it as a bruise, not knowing anything about lyme back then. After that "bruise" I made 3 trips to the E.R. with high fever, brutal headache, swollen knee, sore throat, and a strange feeling I can only describe as feeling like I was looking at the world from 6 feet away. Everything seemed like it was far away, and I was disconnected from it. Very scary feeling. It took me 4 months to feel better, and by then I was reading about lyme for DS. I realized my bruise and E.R. trips were likely lyme disease and asked for a test even though I felt better. It came back CDC positive. BTW - DS also got rashes inside his elbows. He had various rashes usually resembling scarlatina, but only in small patches here and there, coming and going. The rashes came out when he started on antibiotics.

Thanks everyone!

1. ADHD was my son's first diagnosis, leading to an alphabet soup of psych diagnoses. 2. We declined ADD meds due to bipolar symptoms and risk of triggering mania. 3. DEFINITELY episodic in nature, along with all other symptoms.

For those who have treated for parasites, what made you decide to do this? What are the most common symptoms? Can we just do a preventative treatment plan like we do for our pets, or do we need to do specific tests and treat accordingly? I deworm my farm animals and pets every spring and fall. So I got to wondering why I don't deworm the humans too. My 3 boys play with the animals, play in the dirt, etc. So it makes sense they would have the same parasites as our non-human residents, right?

Sorry, didn't see this until today. For us, the shirt chewing always happened before/during illness for my kids. If they started chewing I knew someone would come down with something very soon. Strep? IDK. My strep "carrier" DS was the worst chewer of all, literally destroyed dozens of shirts and even 3 jackets. Drove me nuts! My youngest had a bout of shirt chewing this fall. I did not see this behaviour at all last year when they were all being treated for lyme/bart, so I was really disappointed to see it resurface. As for the urinary thing, DS9 had this twice very briefly during treatment for lyme/bart. I could not connect it to any med change or increase. But it did come along with a flair of all other symptoms, both times. The first time we thought UTI, but it was negative. Doc was still concerned so we got an ultrasound of his bladder and urethra. All normal. But by then the dribbling was long gone (only lasted a couple of days). When it happened the second time I waited it out, and again it only lasted a couple of days. But since decreasing abx in Sept, this has been a constant problem. And it's no longer just a few drips. Now he's changing underwear several times a day, asking for pads, and even wanted to wear a pullup one day (he makes fun of his brother for needing them at night, so this was a BIG deal for him to ask for one). So now this is a fairly constant and debilitating symptom. I connect this directly to weaning him off some abx. We have not done any antivirals or addressed biofilms, so no connection there for us. We treated lyme/bart with 3 antibiotics, along with prophylactic yeast meds, and lots of supportive supplements. The last few months we were cyst busting. Despite great success, we are now weaning down meds, looking for plan B. (Doctor issues, long story).

If you find out what works please let me know! All 3 of my boys are/have been shirt chewers. One would actually chew the collars right out! Also, my oldest has been in an exacerbation for several months. One of his new symptoms is daytime urinary incontinence. So I am very interested to hear what it is from and what helps.

So glad to hear you are having some success! Yay! I would definitely get her on the probiotics ASAP. Maybe start with a smaller amount and wean up, since she has been so sensitive to everything. There are lots of good options for detox, and they should help to lessen the herxing. We use herbal detox combos as well as milk thistle, and lots of antioxidants. BTW - my DS also gets very upset about copying.

DS was taking azithromycin and amoxicillin at this time for lyme/bart when we added rifampin. Plus prophlyactic nystatin for yeast overgrowth. Yes, I am really discouraged right now. Mostly because our family doc is blocking us from continuing treatment by insisting it is unsafe. Our LLMD told us it might take another couple of years of treatment before DS would be well. I haven't given up hope yet, especially because we saw amazing success with the treatment we have done so far. We just have to jump through a few more hoops, maybe try another route, and somehow get family doc back on board. Are you having any success with your daughter? I recall it has been a very rough road for you. Have you found a treatment that is starting to work?

I can tell you what it was like for us. My PANDAS DS9 was treated for bart early this year, while also being treated for lyme. We started with bactrim and it made him agitated and extremely aggressive. We finally gave up bactrim and moved to rifampin. Here are my journal notes from when he started Rifampin for bart. Day 1(1/2 dose) - Great day! Unusually good! Day 2 - can't wake up, "too weak to stand", sensory overload, binge eating, can't sleep Day 3 - can't get up, yelling, angry, right knee pain is "flashing", DEFIANT! Day 4 - Good behaviour day, tinging in foot then in hand, diarrhea Day 5 - Really good! Tingling and diarrhea continues Day 6(Upped to full dose) tingling and diarrhea Day 7 - Really good, tingling continues, diarrhea stopped Day 8 - extremely aggressive, fever of 102 Days 9 & 10 - fevered 103-104.5 all day and night, won't come down with motrin, pain in forehead and eyes, cough, bad diarrhea, "feels like I'm floating" Day 11 - a.m. 101, fever broke in afternoon, extremely defiant and scary aggressive Day 12 - extremely aggressive and mean Day 13 - 6 a.m. hysterics, pain in both calf muscles, can't walk, crawled around all day, croupy cough Days 14 & 15 - easily irritated, but no longer aggressive Day 16 - visual disturbances, yellow ball looks "rainbow", "I saw the ball over there, but then I looked and it wasn't really there" Day 17 - can't wake up, talking funny, not making sense, p.m. really good afternoon/evening, 11 p.m. sleepwalking, tried to go outside Day 18 - confessing compulsions, fell asleep on his desk at school From day 19 for 2 weeks - AMAZING, happy, calm, able to listen to music again after years of it bothering him, affectionate. Able to wear pants after wearing shorts year round for 2+ years. WOW! Also, itchy skin and drenching night sweats (detoxing?) After 2 good weeks another horrendous week - leaking pee, aggressive, threats to kill us, manic, sensory issues, agitation, croupy cough, can't sleep, etc. Then another 2 amazing weeks - happy, helpful, no OCD, chatty and affectionate And this pattern continued with each bad period decreasing in length and intensity for 3 months. He made huge progress! Then he had a major relapse in June and we don't know why. We're still working through that today. Hope that helps.

I appreciate any advice, for the present emergency or for down the road! Yes, I took him back to show doc the huge relapse, i.e. my non-functioning child, and DS was happy, cooperative, and well-mannered at the docs. No wonder he thinks I'm nuts. DS continues to be hypomanic which is so much easier to manage! OCD is really bad though. We're seeing a PANDAS-friendly Canadian doc in 2 weeks. I'm really hoping something comes of that appt, and I think we are finally ready to consider IVIG if that option becomes available to us.

My 6 year old (non-PANS) was treated with antibiotics for lyme/bart for 12 months. He's been off since July and is doing very well.

Thanks everyone! I appreciate the support and good suggestions. DS has been hypomanic since I posted this, which can be overwhelming, but it is also a breather, cause he's so happy and cheerful. Unfortunately it's an edgy, uneasy happiness, with lots of outbursts mixed in. But hey, we'll take it! Still mulling over which direction to take. Thank you for your feedback!

Airial raises a good point that when PANDAS parents get accused of doctor shopping there is an implication that they just can't accept their child's mental illness. Well I'm in the same boat as ko's mom. We ran through all available options in mental health, accumulating an alphabet soup of psych labels, all the while watching our son continue to deteriorate before we finally realized something else was going on. When he started on antibiotics for the first time we watched an overnight transformation that was nothing short of a miracle.

After 14 months of treating lyme with high dose combo abx and supportive supplements we are being forced to stop. Our family doc will no longer do any bloodwork or prescriptions for us if they relate to lyme disease, and has advised us in very strong terms to stop this treatment. He even went so far as to tell me he thinks DS's symptoms are "attention seeking", and that too much screen time is likely a contributing factor (DS was playing games on our ipad while waiting for the dr). He gave us a referral to a pediatrician who he believes can help us pursue PANDAS, although given his previous comments I don't think he supports this either, and he was not even interested in looking at DS's cunningham results. DS was on 3 high dose abx and made AMAZING progress, although in recent months he had plateaued and was stuck with mood lability issues. So a few weeks ago when our family doc pulled the plug we weaned down 1 antibiotic and symptoms immediately began to return. We started weaning down the 2nd, and DS is now berserk. And by berserk I mean he is aggressive, agitated, OCD is once again debilitating, sensory issues are on overdrive, manic-type behaviours, got suspended from school for attacking a student and knocking down a teacher, yelling, throwing chairs, rage fits, elbow pain, stomach pain, wearing feminine hygeine pads because pee is dribbling and won't stop, trouble sleeping, separation anxiety, vision disturbances - bright lights & floaters, episodes of vision going black and feeling like he will pass out, binge eating, med refusals, and short term memory lapses (i.e. "What did we just do 5 mins ago? ... Oh ya, I forgot." And losing thoughts/words mid sentence.) In short - HELP!!! Does anyone have any advice, suggestions, or even just moral support? We are considering treating lyme with naturals, focusing on mold remediation, really pursuing alternatives like MTHFR and pyroluria, and/or focusing on PANDAS. I'm not sure what other options we might have at this point, but I am eager to hear anyone's advice as we don't have the resources to do all of this, and we need to narrow down our options to the most likely to help.

I don't think it's fair to call it doctor shopping, when you are seeking to get your child well. If the 1st doctor has a treatment plan that doesn't work, what parent in their right mind would accept that? Or the 2nd, 3rd, or the 57th!!! As long as my child is not getting well, I'm going to keep looking for help. That's not shopping, that's just being a parent.

Before DS's PANDAS and subsequent lyme diagnosis we tried seroquel with no improvement at all. But you never know, everyone's situation is very different.

When DS was a toddler he had symptoms of PANDAS. We didn't know it then, but in retrospect it is obvious. For example he would only wear green clothing when he was 15 months old (!!!). If I tried to put any other colour on him he would fuss and fight, and end up ripping it off. He would pull open the bottom drawers on his dresser and bring me anything green he could find. But it wasn't until self-harming behaviours started at the age of 3 that I realized something was seriously wrong. He would slam his head repeatedly on the wall, and leave bite marks on his own arms. These behaviours went away immediately with antibiotics. It wouldn't surprise me at all if cutting was a symptom connected to infection.

Well the gene thing makes some sense to me. That could explain why all 3 of my boys got lyme, but only 1 got PANDAS. Maybe lyme was their particular trigger, and DS9 probably has the "faulty" gene combo, therefore he gets PANDAS. ??? Just thinking out loud.

Sounds like it could definitely be OCD, and that would be my guess because of the "dirty" comments. But it might be worth also looking into babesia infection. Babesia is a parasite, somewhat similar to malaria and it causes air hunger (the feeling that you are not getting a full breath).

Good point. I never really thought about it, because he doesn't meet the criteria (carriers don't count as having active strep infections). But if I fought hard enough I could probably make it happen. I will be considering it for sure! TY!