hugs2day

Thank you. Yes, BART is still on radar I just got a lead on an LLMD in CA that comes recommended. One interesting note, I started him on flagyl last night because of gastro symptoms and the lymph node went down quite a bit, noticable this morning. It is still protruding but went down. He seems a little better after the flagyl is adminstered but his urine smells like straight amonnia or dog urine. Its bad. The flagyl was prescribed by his local ped because he said with all the antibiotic use maybe my son developed cdiff. Its a 7 day script. so nervous for my son. He is on daily Azithro which for awhile was the magic bullet. The symptoms this time are very reminiscent of the initial onset which is surprising considering how good he was doing and all the supplements I have him on that made noticable improvement. What's interesting is my ds9 is holding strong for the first ever he is not responding to illness. (such a blessing) I have an appt with DAN on Monday morning for ds6 and calling to make the appt with LLMD in CA as well. My ds6 is afraid to leave the house, so upsetting... He turns 7 on valentines day. Every year same story. You keep giving me so much good information. Thank you.

I do think the itching is something gastro related, he is constipated everyday his entire life. He just started Flagyl yesterday evening after being at a loss why steroids wouldn't help and we found a huge swollen lymph node behind his right ear. The flagyl seemed to stabilize him for the evening and then this morning he was moody and tough again. Calmed down after Flagyl this morning so I agree he either has gut bugs, cdiff, or bacteria overgrowth. Azithro still being given daily hopefully between the two we can get this flare up to calm down, its not looking too good. Not sure if its a full moon right now will have to check. Thank you. I never heard of that theory, but certainly he has something going on right now. Staph is what is on my radar right now, because he keeps getting these little blisters on his forehead. Like whiteheads and the pediatrician says it looked like staph so he gave him keflex last month in addition to the azithro the blisters cleared up but I think the double dose of abx gave him cdiff or yeast or both and now we are dealing with that, plus his older brother is sick with flu.

My DS6 is having some difficulty (OCD, seperation anxiety, intrusive thoughts) after enjoying several good stable months. I didn't understand the trigger for this over the past few days but I do now. My DS9 has the flu stayed home from school today, he is holding on good though with his PENN VK (this is a first), thank goodness! But DS6 is clearly responding to the exposure and also has a huge swolloen lymph node behind right ear. Ped says we will keep an eye on it, but it doesn't seem to hurt him. Is a swollen lymph node ever seen with any of your kids? It obviously indicates his immune system is on high alert. He is on daily azithro going on 16 months now, he's been a good responder and so far until now only had flare ups with teeth. Something is clearly changing in him though. Maybe needs larger dose of Azithro? I stopped the steroid burst with docs okay, it was aggravating the symptoms. Any advice would be appreciated.

Thank you all for your replies they are very helpful. My son is on day 3 of prednisone and symptoms are getting worse. So many questions why it helped in November but not know. I am looking for an LLMD but none in my state I will need to go to CA. My research focus has changed to LYME/Bartonella and I am completely overwhelmed.

I recently have posted that I think my children have LYME or Bartonella in addition to PANDAS. Anyway my youngest is starting to have some troubling symptoms without a known trigger, usually I can tell the trigger. Well the PANDAS doc started him on steroids a few days ago but I see on this forum steroids are bad for lyme. Please help me understand why steroids are not recommended for LYME? If my son responds well to steroids does that indicate he may not have LYME or coinfections? Any information is appreciated.

My son never stops scratching I am starting to research that this may be caused by high histamine. Especially worse when in PANDAS flare. I gave him pepcid last night per another members recommend and it may have helped he slept through the night and so far not too itchy today like previous days. The ear thing could be sensory or ringing in the ears possibly. When basal is attacked and inflamed it effects the entire vestibular system, as said by my sons OT. I see huge sensory gains when he is stable and huge sensory regressions when in PANS exacerabation. You might try antihistamines or steroids.

I just wanted to share I recently found a good probiotic that is supposed to target the oral bacteria in mouth which is a trigger for my kids when they have loose teeth. It does not have the strep strain and it has Xylitol which is supposed to kill strep mutans in the oral cavity. Its by klair labs: PRODEGIN™ Chewable probiotic Prodegin™ is a high-potency blend of 5 Lactobacillus species It is formulated as a chewable tablet to facilitate prolonged contact of the probiotics with the oral cavity, thus allowing the probiotic microorganisms to exert activity for oral care applications. its 30 billion I give twice a day, I also rotate culturelle and lactobicillus duo from kirkman. I too avoid the strep strain for my kiddos even though the PANDAS docs says it okay.

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. WHAT DOES THAT INDICATE WHEN THEY GO BACK TO SQUARE ONE? MY DS6 IS THE SAME. HE HAS BEEN ON daily dose of Azithro and if we try to lower he regresses to square one. My older son we have been able to reduce dosage no regression. Being antibiotic dependent worries me we have created new problems. Although I will say I would prefer my son on antibiotics than on antipsychotics. I am beginning to wonder about what is really plaguing my ds6.

My ds6 has these itch attacks in his legs (maybe its pain) he screams they hurt when PANDAs symptoms start to ramp up, this is the 3rd one in about a year, the first being the big one when we found out about PANDAS. What happens is he wakes up (last night 3am) and is crying, screaming agitated, kicking his legs. Kind of hard to console. I noticed he has been really really itchy the last few weeks and has had some mild preserveration issues. I used motrin on him the past few days and thought he was doing pretty good until last night. Once I calmed him down I had to scratch his legs and massage them for nearly an hour and then he wimpered a little like he was sad, then got glad and was huggy and told me to sleep with him and rub his back but then went back to sleep after 2 hours. He was up from 3am to close to 6am. Could this be high histamine, inflammation, both, restless leg syndrome, lyme, etc.? I am currently looking for LLMD because I have suspsicions of co-infections besides for PAnDAS even though my son had a long history of strep. Any of your kids get itchy out of thier skin durig exacerbation? It seems like a combination of pain and itchiness. My older son says his legs hurt too but he says its more like deep burning.

Thank you! Great information, although I don't know how anybody gets rid of all the electro waves of cell phones, smart meters, etc. A lot of work.

Great job Keira! The fact that so many families showed proves this is not a rare disease and is more common than the media represents. It will take all of us advocating for our kids to change the image of this horrible disorder.

Thank you! Your posts were a huge help and does give me a place to start and hope. Thank you so much!

Hello, I'm new to Lyme forum, please indulge me I have a lot to explain and questions to be answered. First, I have two boys with PANDAS and long history of strep and/or Ear Nose Throat (ENT) infections. Youngest had his tonsils out because they were so infected he couldn't breath or eat, two months later he was possessed by PANDAS followed by older DS taking on OCD/emotional liablity and both have been under treatment since (eg. Azithro/PennVK). Daily antibiotics. Now I am here and I see so much of my symptoms on this LYME forum. To begin, I was bit by a ferel cat a few months before I got pregnant in my wrist area and it resulted in an bad infection that had to be treated with antibiotics. Fast forward two years later, I have another baby, and I have health problems that include shortness of breath, fatigue, depression, sensation of stabbing bites on my feet, sore feet, positive ana titer (determined not to be lupus), enlarged spleen spent two days in hospital with no answers. 9 months later after many scans and tests told my gallbladder works too slow and it should come out, no gall stones, just dumps slow. Gallbladder is removed and I developed chronic staph after surgery although the lesions never cultured just looked at and I was given minocycline often. Two years later I still have most of the those itching, sore fee, etc. plus many more symptoms listed on this forum. Fast forward)) while I am going through all this my youngest son is getting sicker and developmentally delayed. He has night terrors and staring spells, seperation anxiety, sleeping problems,gastro problems and is H**l on wheels to care for. Always sick with ear infections, throat infections, snores @ 2 years of age. ETC. I was told he has autism but now that he is being treated with Azithr he looks better than I have ever seen him all previous symptoms have dramatically improved and some disappeared all together. So I am pretty sure chronic infections were plagueing him his whole life and if he has autism it was induced by infection. My older son is typical. SO, I think I have LYME or some kind of coinfection from that cat and I gave it to my kids. Is that possible? So could they have PANDAS and co-infections? I was given antibiotics during both births because I was Group B positive and both were ceserean section deliveries. We have no known tick bites and we live in the desert southwest, just the history of the cat bite. My oldest was sick all the time with ENT infections and my youngest was born with an infection given antibiotics shortly after birth and he is the one that really gets bad neuropych symptoms and it extremely itchy and has restless legs....etc. so many symptoms that cross over from PANDAS/Autism to LYME related symptoms. Any knowledge/experience you could share to help me minimize my research would really be appreciated it is so complicated. It is clear antibiotics keep my kids stable but not 100%. Is it time to find an LLMD for my kids or should I give it more time on Azithro (1 and half years) and PANDAS protocol? I am for certain going to ask my internist to run the Quest labs on me to start with. Please advise. Thank you.

I have given activated charcoal to my kids in water, I just open the capsule and put in a canteen of water so they cannot see the black. They drink it no questions. It helps calm things down when they are having mild symptoms but not a big help if in a serious flare. Mostly I use it to clean up yeast die off. They have never had a bad experience with it, no side effects. That is my experience so far.

Natural Calm Magnesium helped my ds9 tics some but nothing got rid of them until Pen VK. That so far has been a magic bullet for him. Keeping my fingers crossed.

I copy and pasted what I use on my kids from another document but here is the gist...all below are working well and I introduced one at a time and slowly to check for side effects. Its been nearly two years to get to this point. Supplements that did cause side effects were GABA (gave both my kids anxiety attacks) and magnesium sulfate cream (turned their skin red and itchy). Other than that my kids have benefited from every supplement below. I should mention also that their lab work showed they were low on Vit D. My youngest is now at therapy supplementation and my oldest a modest daily supplementation. Also a lot of the supplements are chewables I bought from Kirkman's. Azithromycin daily Vitamin D3 5000 mg daily Vitamin C 1000 mg twice daily Magnesium Citrate or Glycinate 1000 mg daily Fiber- a scoop if eating apple sauce in the apple sauce Aloe Vera Juice (occasionally) Multi-Vitamin -daily Vitaspectrum Enzymes with every meal Singulair Granules 1 packet daily Isoquercitin daily Zinc 40 mg daily Taurine 1000 mg daily Fish Oil - Coromega packets CO Q-10 100mg daily Probiotics: Culturelle-1 capsule culturelle Therabiotic Chewables -2 tabs Kirkman Lactobicillus Duo daily (mostly use this one but add in one of the others to alternate probiotics) Custom Probiotics - 11 strain Probiotics must be 2 hours away from Antibiotics Yeast: Capryllic Acid (occasional) Olive Leaf Extract (occasional) Yeast die off: Activated Charcoal (occasionally) Alka Seltzer Gold (occasioally) Pepcid (RX) if taking steroids to protect stomach. If steroids supplement extra VitD3 and Magnesium because steroids deplete them.

It's such a mystery. Sounds like several of us see timing trends with our kids. Makes me wonder in a way if its related to the time of year he was vaccinated. Who know I am just hypothisizing here out of desperation. I too am dreading this time of the year, the symptoms linger until March. Exercise and sun does help some. I never heard of the treatment using those lights but I am going to look into it. Thanks for the advice on the mouthwash will look into that as well. Also, on the teeth exacerbations our DDS recommended Xylitol Gum (SPRY) she says it kills strep on teeth. I let him chew it like crazy because its Xylitol it helps prevent tooth decay and helps move the bowels and keeps an anxious child busy doing something.

I'm curious about the yeast beast you brought up. My son I think has this issue. Did the yeast die off look like PANDAS? Was your child on diflucan at the same time as steroids? I read that steroids can cause yeast, but I also give to my son and it helps. My youngest is the one with the issue and he also has constipation every day of his life could that be yeast also?

I have two children with PANDAS my ds9 is doing fabulous (finally)! My ds6 is much more complicated and that is why I am sending this note out for advice. He has a lot of new teeth coming in and its clearly a trigger for him. But I also notice based on my journals he has PANDAS episodes at certain points of the year. Right now being one of them. I have logged for the past 2 years (this year being the 3rd year) that mid January the symptoms start and by the end of January much more severe symptoms. I thought maybe the weather, windy and cold right now, he is also very itchy. Giving Singulair granuales, quercetin, enhansa amongst many other supplements and probiotics and antifungal and most importantly he has been on longterm Azithro daily for 15 months now. Does anyone else notice a trend with symptoms at a specific time of the year? And a local friend whose son also has PANDAS in starting another exacerbation right now too. I should also add that my son and my friends son are home schooled so it can't be exposure to other kids. They don't see each other either. Why does it cycle at same time of year like clockwork?

We use enhansa as well for a year now in addition to many other supplements. Everything has helped and my son is more stable than not most of the year. Not sure if its helping but I know it can't be hurting (it is an anti-inflammatory) we still have to give advil when symptoms start usually with loose teeth issues.

I used steroid bursts not tapers on both my kids and it was successful. But I will say I am always careful I have wiped out any live infection/bacteria first with antibiotics. My younger son gets gastro issues with his PaNDAS so we once had to add Flagyl for 7 days (for bacterial overgrowth in the gut) in addition to his azithro before we start a steroid burst. Another time he had impetigo on his forehead we had to wipe that out first and then because the antibodies wanted to continue to wreak havoc I gave him the steroid burst later and it pulled him out of the symptoms. My older son gets symptoms when he looses teeth due to the streptococcus mutans that live on teeth and I usually increase his antibiotic and once had to do a steroid burst as wells as the abx and he pulled out of it. Steroids help the autoimmune response tame down because they lower the immune system that is why I make sure the infections are gone first. My son was also prescribed a taper and I had the doc change it to a burst. If you start steroids my sons doc said you can stop at 5 days but if you go past 5 days you have to taper down otherwise not safe to stop cold turkey. I did not want to committ to a 21 day taper incase things went south and as it happened a burst was all they needed to calm down the immune response.

My ds9 is finally getting better after the worst flare up to date. After 1 year on AZithro my son would still have occasional flareups (manageable) and then things took a turn for the worse at the start of 3rd grade, he began seeing imaginery lasers, crazy ocd rituals, and more. We increased the zithro and he did not get better, I took him to a local neurologist whom agreed with the PANDAS doc that my son had PANDAS. The neurologist had him write a sentence on the white board and it looked like a 4 year olds attempt at writing, I had examples of what his real handwriting was, plus emails from the teacher about his rapid decline in math and writing and clearly some wild stories about fears he had while at school. The Neurologist put him on PEN VK 250mg/5 ml 2x's daily over a month ago and I just wanted to share that my son bounced back quickly. I just wanted to know if anyone else on this forum had luck with Pen VK. I have two boys and both are doing well right now on two different antibiotics. My ds9 is typical and very intelligent his PANDAS was primarily tics and intrusive thoughts causing extreme anxiety inlcuding food contamination issues and I can say that Pen VK has brought him almost 95% home. In all my research I have never seen much on this antibiotic so I wanted to hear what others think. Right now he was given a prescription until the beginning of March after that I am not sure what the dosage will be or what's next.

My son's DAN is licensed in NM. PM for contact information.

THANK YOU. I HAVE HOPE. HAPPY HOLIDAYS!