MamaBeartoCharlie

I'm sorry! This sounds like an awful lot to be dealing with. Lyme is nasty and especially so for our fragile children. I understand wanting to try steroids and IVIG to stop the progression of the illness right now. But steroids are contraindicated with Lyme, as it only further dampens his bodies own natural immune response allowing the bacteria to multiply further. Also if you search the forum you will see there are lots of stories of IVIG being ineffective because of underlying Lyme. If your paying out of pocket you may want to consider making sure his body has eradicated the Lyme (and any co-infections) more thoroughly before jumping into IVIG. Our LLpans doctor recommends many months of antibiotics for any tick bite and with a bullseye you have a pretty clear indication of an infected tick. Are you giving anti-inflammatories and doing anything to help with detox from the antibiotics? We've always been nervous about the daily ibuprofen and never given higher doses for a longer period of time. For the past 5 days we've stuck on it 3x per day and it's having a tremendous benefit here. My 60lb son receives between 300mg in the morning and 250mg twice more each day. One of our pans doctors recommended we could go up to the 300mg every four hours for four days and the other doctor recommended 250mg, 3-4x a day for a full 7 days, so we've combined that advice and plan to continue for the full week given the tremendous improvement we are seeing. We are also about to start a steroid burst but we've waited more than six months to try to be certain we are not dealing with Lyme or any co-infections here. I think with Lyme the struggle is finding a LLMD and pans-literate doctor who understands treatment for both conditions. Oh and yes other bug bites can cause flaring. My son develops a strong allergic reaction to bug bites and that always flares things up for him. Also, he has trouble with pools - even our own backyard salt water pool. Not sure if it's the chlorine or the bacteria or both, but I know lots of other parents report the same difficulty. You don't want to indulge his new fear of the outdoors but skipping the pool for a little while may be a good thing for him to see if he settles down. And I totally understand how sad that is. We're having the WORST summer ever here avoiding potential triggers

We don't have stuttering exactly but other speech issues. One is a bit of a slurred sound when my son says hard "c" sounds - my daughters name starts with a C and he says her name constantly to get her attention so it's quite obvious. It's almost like he adds a "L" so the hard "c" becomes a "cl" sound, but it's a bit more garbled. His "s"'s sometimes sound more like "sh" too. He has also started a tic where he speaks in a growl type voice sometimes. It's very strange. Some sentences will be half growl and half his normal voice.

PanLymeMom, We are in Ontario but receive care through Dr Ayla Wilson, an ND in BC. We have access to Dr Wendy Edwards in Ontario as well but Dr Wilson is very knowledgable and we have chosen to consult with her to address gut issues etc in addition to just receiving antibiotics. Dr Wilson will consult by phone. She is vey knowledgeable about both PANS and Lyme. You don't need a referral and can book through her website (she is away for the next two weeks but is generally really great about fitting patients in) Dr Susan Bensler a rheumatologist at the Calgary Children's Universith who I beleive may also be treating PANS patients. Dr Paul Arnold is a psychiatrist who is now in Calgary as well, and I understand he has an open mind with respect to PANS/PANDAS. I'm not sure if he is prescribing antibiotics. There is an Ontario FB PANS/PANDAS Caregiver group as well that has grown to include parents in other provinces. I can't seem to include a link but you should be able to search it. Kerry Henrikson is an admin and can add you. Given you are dealing with Lyme and PANS I think Dr Wilson would be your best bet.

I know the issue is obviously the anxiety and getting her there. Have you used Emla patches? We sort of did our own ERP using the patches. It used to be full blown anxiety attacks and crazy vocal ticcing beforehand and we would have to hold my son down. By having a few positive experiences with the patches it's now much easier. I think last time zero pain plus a trip to the toy store afterwards did the trick because now our daughter needs to get blood work done and my son said he wished he could go so he could have a reward! I was shocked he would actually "want" to have blood drawn. Maybe see if she will try the patches at home and you can test their effectiveness by poking the area. Do that as sort of an ERP exercise? You don't want to do a sneak attack but depending on how close you are to the lab and if you need an appointment, maybe during a second or third patch trial exercise you could just go straight to the lab without much time to dwell on it? I hate the idea of giving the kid lidocaine she doesn't need but once or twice it may be less harmful in the long run than having to restrain her. Good luck!!

Hmmm...this really has me thinking today. Our son was gf/df for years before his PANS diagnosis. The diet changes definitely helped with his early PANS flares in toddlerhood (which we didn't know were PANS then). Reintroduction of gluten and dairy in the past caused a major regression which was improved again by changing his diet. With such past success with diet changes, we followed the recommendation of the first DAN we consulted after our son received his diagnosis, to remove all grains. But in removing the grains we've found we've actually increased his intake of processed meat and vegan "dairy" products such and cheese and yogurt - major glutamate offenders. I've really struggled with giving him so much processed meats but with his diet so restricted otherwise we've needed some convenience foods. I've really questioned whether the meats etc are making him worse and just before reading this was contemplating removing or limiting them. After reading this I stumbled online to information on the REID Glutamate free diet. I think I'm going to try it and see if it yeilds any positive results. May need to wait until school is out to jump in with both feet but I'll keep you posted on whether it has any positive impact.

My son was on Zithromax for 7-8 weeks. It was the first abx he was prescribed for his PANS. It wasn't the magic bullet for us but if you search on the forum some parents have found tremendous success with it and use it long term. It does have risk of possible heart side effects which concerned me (my son eventually developed chest pains while on it but that could be Lyme related as he had other symptoms too including tingling and leg pains). I think 3 weeks is such a short course by comparison to typical Lyme and PANDAS treatment it is likely very safe. To mitigate the possible side effects you should give probtiocs (but as I just posted about for some PANDAs kids probiotics can exacerbate symptoms - I understand this is rare and from what we do and do don't know about antibiotics and probiotics I still think they are crucial while on abx for any duration.

Thanks so much everyone for your replies! I've had trouble logging in on my mobile and living in this PANS nightmare makes it hard to get to the computer! We had strep in the house again last month at a time my son was of antibiotics. It caused a further flare but thankfully we caught it early and started him back on Keflex before my daughter even had strep symptoms. She swabbed positive the next day. The whole experience affirmed for us both that our son does indeed have PANS/PANDAS and the need for long term antibiotics! Since that flare we've since also added Biaxin to treat we suspect is also myco p (which we can't measure titres here for in Ontario so we have to rely on a clinical diagnosis). We initially saw a huge improvement in mood and behaviour with the Biaxin, but at the same time we saw a drastic increase in some of milder OCD symptoms (which mostly include tapping everything my son touches in order to achieve symmetry). Our doctor felt the flare up in OCD was attributable to die off and (praise God!) it seems to be better the past few days! (praying Biaxin is the miracle antibiotic we've been looking for!) We did have a stool analysis done in late April and just received the results. He is lacking entirely in lactobacilus bacteria, 2+ in bifidobacterium but has 4+ of the good e.coli. He also has gamma haemolytic strep (different from type A strep) and kcitobacter in this gut which are showing as 2+ and non-pathogenic. More concerning he has 4+ on klebsiella oxytoca which is potentially pathogenic. Needless to say with all the antibiotics and these stool test results we (and our doctor) feel he has to be on high does probiotics. But...we continue to struggle with his reaction to probiotics. We recently tried again to increase his intake of Gutpro. As soon as we started increasing the Gutpro his mood went totally down hill. He was obsessed with things being "fair" again and totally incapable of hearing the word no. Last night he spit in my face at dinner and 2 seconds later was hugging me and crying. That was sort of the final straw for me and I felt we had to take a break from Gutpro. So at bedtime yesterday we gave him HMF powder (which he has been on and off for years before our diagnosis and after). We've noticed today his mood isn't quite so bad (only 1 tantrum this evening over not getting ice cream), but his vocal tics are much worse today. We have been expecting some die off as his OAT test still shows some high yeast markers and presumably this Kliebsiella and the strep in his gut will get crowded out with the increase in good bacteria. We've been going so slow with increasing his dosages we still worry he isn't getting enough (normally only 10-20 billion). Any advice on knowing what is die off and what is just a bad reaction? Any recommendations on other probiotics to try which might be better tolerated? I know Custom Probiotics are used by many on the forum, but their formula seems very similar to Gutpro so I'm hesitant to spend another $200 with Canadian exchange and shipping for a similar product that presumably will have similar results. Even when I can't get logged in to post, I scroll through the forum regularly and am so thankful for this community! I hate that we have to be here but its comforting to know we aren't in this alone.

Tics have been our biggest symptom in the flare we've been in since September. DS is on Keflex and our doctor recommended he take a dosage of 50-100 billion probios/day. He was previously only taking 4-5 billion (regular adult dosage). We just started GutPro and he's not even up to the full infant dose yet but tics seem to be worsening for him. Die off or are we actually making him worse? Push through and detox or scale back? We also introduced Sacchromes Boulardi and I stopped that just to focus on a possible reaction to the GutPro. We also need/want to introduce liver drops, nystatin and Biaxin over the next while and I'm trying to go slow and steady so I know what's helping and what's not. We've been on the Gutpro since Friday and started SB Sunday. Yesterday was bad for tics so I only gave GutPro and not SB, and this morning a new coughing tic developed

There is a link right on the website to all the ingredients in the product. I'd never consider it otherwise! I can't see the ingredients tab on the mobile website but it's there on my laptop. So afraid to try anything new but need these tics o stop and working on the theory they may be related to not clearing toxins and knowing my little guy has a sluggish liver hoping this is a gentle way to help him.

Has anyone tried this product? The whole line of kids products looks interesting to me. The NDF calm is a gentler kiddie version of Liver Life, which I've read is popular in AdS biomed. I feel like my son could use some help clearing toxins. Wondering about others experiences?

I find the EDS connection interesting. I had a chiro diagnose me just based on the flexibility of my elbows. I stand with my knees locked and hyper extended and have dislocated my knees with only stretching and not tearing tendons - from a knee injury I was dx with benign hypermobilty but my chiro says it's actually EDS. I don't have overly stretchy skin but it's extremely soft. My PANS son has low muscle tone and so I suspect he may also have EDS if it's what I have. I know low tone in infancy is recognized as early warning sign for ASD as well and a correlation between ASD and EDS has been studied. The gene for EDS could the part of the genetic susceptibility for many of our sensitive children.

Thanks so much for sharing your stories! I do wonder if it's congenital lyme. I had a stillbirth at 25 weeks in my pregnancy before DS was born. My daughter's autopsy was inconclusive but during labour I spiked a crazy high fever and was pumped full of IV abx so I've always felt it was an infection that caused her death. She also went from developing perfectly normally to suddenly having reduced movements. She slowed the night before she died but was still moving. The next morning I couldn't feel her move and went to hospital. She was alive but had hydrops on ultrasound and still wasn't moving. Six hours later we watched her die in another ultrasound. The way she died made a cord accident not really plausible to me. I always worrried I'd picked something up swimming in the lake at the cottage the weekend before she died but maybe I got bit by a tick then or maybe I've been carrying Lyme a lot longer (I have had knee pains and unexplained swelling since preteen along with a history of illness and weird immune responses myself in highschool - not to mention repeated strep!) When I was pregnant with DS I went into preterm labour at 23 weeks - carried him to 33 with bedrest and meds to stop the contractions. Then with younger DD, I was on abx throughout my pregnancy (for a positive urea plasma swab) and the abx worked better than anything else to stop my contractions. Could just be the urea plasma but my bodies reaction and the death of my first child make me think I may have had something much nastier going on that just that! I think being on abx in my last pregnancy may have helped my daughter. I also have had some major fatigue and mood issues etc since my first pregnancy in 2009 - grief, followed by having 2 under 2, and a crazy high stress job always seemed to explain it but now I've got a host of other issues and am really struggling physically and emotionally! I definitely should get myself tested! Going broke with all this though as none of these speciality lab tests are covered under our Candian government health care. Our ND recommended we use the blood already at Igenex to check for co-infections - we just did Lyme to start with. But the costs are still about $2500 to do that. I'm wondering if another urine test wouldn't be more cost effective and show more now. If we don't move on Igenex quickly we will have to do another blood draw though. We also want to do an OAT test and 23 and Me to look for metabolic issues just to know how best to manage this little guy. It's hard to decide where to keep spending.

Oh and what was the dosage schedule - she's recommended 1000mg 2x a day.

Our son is currently fairly stable in terms of his OCD, anxiety and emotional liability but continues to have tics. We've had illnesses is going through the house and my daughter has impetigo on her face which I fear is strep (but my sons strep titres have been low so he was labelled with PANS and not PANDAS - coxsackie and his varicella vaccines appear to have played a major role for him). We hit a brief rough spot last week with rage etc and our PANDAS knowledgeable Ped prescribed Keflex. By the time we received the prescription he was doing much better and had a fantastic weekend (I shared in another thread how I think pomegranate cherry juice helped) so we decided to wait for our Lyme test results which we knew we would have Tuesday from the naturopathic doctor before starting the Keflex at that point. The showed only positive for Band 41 (so negative for Lyme but we will test further). Tuesday his tics has increased again, Wednesday they were also high, but tonight he seemed better again - tics I'd put at 4/10. He got a bit fixated on a strange worry but didn't escalate with it. We're now feeling really torn about starting Keflex (tried Zithromax for 8 weeks previously with no real improvement in tics and it seems to make his mood and rages worse). We want him "cured" but aren't convinced with low strep titres and inconclusive Lyme that there is some immediate infection we need high dose abx to kill and so we worry about the risks of using them long term. Given his reaction to Zithromax and a herbal antimicrobial we tried I also worry if he does have Lyme or something else that is going to cause die off, going too fast with a "kill" may also not be a good treatment strategy for him - although I know Keflex isn't generally prescribed for lyme. Our doc believes in the antinflammatory properties of abx for PANS/PANDAS and not just that they kill underlying infections. The doc prescribed 2000mg per day of Keflex for our son who is 57lbs. This seems super high to me. What dosage of Keflex did your children start with and has it worked for anyone whose child doesn't have high strep titres?

Totally by fluke I think we've stumbled upon something helpful. On Friday we gave our son Kijuu brand pomegranate cherry juice. He had some with breakfast and to get him to drink at school DH watered some down in his school water bottle. After a terrible week (everyone in the house has been sick), he came home a new child! The only change that day was the juice, so I googled just out curiosity and apparently both pomegranates and cherries are powerful anti-inflammatories and have been shown in some research to target brain inflammation related to Alzheimer's. We experimented all weekend. Tics flare up, he has some juice, bye bye tics. Maybe it's coincidence but it seems to be working more effectively for him than Ibuprofen. Thought I'd share in case it may help others! Would be very curious to know if you try it, if you see any improvement. It's super yummy too! Just don't forget to brush your teeth!

Received DS's Igenex Western Blot results today. All negative except band 41 which was single + on IgM and ++ on IgG. I searched the forum and read through many interesting older posts, including those from Dr. T as well as other snippets online from Dr. Charles Ray Jones. Much of the information is now many years old, and it looks like IGenex used to asterisk band 41 but according to their own information these positives for band 41 are not indicative of Lyme. I understand it could be other flagellated bacteria causing the postive as the band isn't Lyme specific, but what else then would it be? The info online seems conflicting as to whether this result suggest Lyme or is the type of postive most people tested would have. Scares me a little reading positives for band 41 with no other bands have turned postive with treatment, or that people with these results have gone on to test postive via urine. We did 8 weeks of Zithromax which did little to help and just created GI symptoms and lots of mood problems and rage (herx?). Tried Biocidin for approximately 8 weeks as well, also seemed to cause rage and mood issues. Currently DS is off of all meds and supplements for a reset. Whole house is sick and he was slipping last week but has had a remarkable improvement since we started giving him pomegranate/tart cherry juice (totally by fluke but apparently both fruits target inflammation and particularly brain inflammation!). MD prescribed Keflex at a high dose - 80 mg/kg - soo 2000 mg for our 56lb six year old. We knew the Lyme results would be coming back today or tomorrow so decided to wait to start the Keflex as he seems to Be much better since Friday (although far from healed as he still tics - just not nearly as frequently and he smiles a lot more now 😊). Would be curious to know if anyone has more recent information on band 41 only positive results. Unsure about the right next move - further testing? Try the Keflex just to see if he responds as the MD has suggested? I'm afraid to make things worse as we want to take both kids to Disney in a month for the first time. We all really need some quality together time in the sun! He's manageable right now - for today anyway!

DS 6 has been diagnosed with PANS based on symptoms. Current flare began in August/September and coincided with some weird bug bites (Dr. thought possibly bed bugs but none of the rest of us were ever bit and they stopped recurring), first lose tooth, and his MMR-V vaccine on September 16. I wouldn't have vaccinated if I was aware of PANDAS/PANS at the time! He was ticking like crazy while freaking out waiting for his needle, and basically hasn't stopped. So the vaccine itself didn't cause all his symptoms but he got much worse immediately after the needle. Looking back he has had flares in the past from a virus followed by his varicella vaccine at 15 months and when he contracted Coxsackie at age 4. Not sure of the cause but at age 3 he also had a flare (suddenly seemed autistic overnight). That flare mostly resolved by removing gluten and dairy from his diet (something we had been doing before but had reintroduced into his diet over the months prior). His strep titres are very low - hence the PANS diagnosis. We are waiting on Igenex test results - started with just the lyme test without coinfections. However, has some symptoms of Bartonella (leg/foot pains, and occasional chest pains), that make me wish we had just done the Bartonella testing as I realize now he could have it from something other than a tick bite and without lyme. We also just did other blood work - CBC, etc. as well as IgG testing. At this point we're flying blind about what sort of underlying infection(s) are trigger him. We live in Canada where our options for treatment providers and testing are very limited. We did a 6 week course of Zithromax from late October to December - it seemed to address his anxiety and OCD a little. Tics may have been reduced but did not resolve entirely. He had crazy rage, some weird tingling sensations, and GI symptoms, while on the abx. At the same time as we started the Zithro we saw an ND knowledgeable in PANS/PANDAS and on her advice we put him on a grain free diet. MD wanted him to continue Zithro despite its limited success and to add Valtrex given viruses have played a role for him in the past. We were concerned with the Zithro side effects. We decided to stop the abx and try just the natural treatments starting over Christmas. Following NDs advice we currently have him on Biocidin, a specialized multivitamin with manganese, probiotics, and activated charcoal. We realized the Biocidin was causing rage, but have adjusted the dosage that it seems to be ok now. We've also tried high does Vitamin A and D (not sure it made much difference), NAC (caused almost immediate emotional outbursts), bacterial and viral nosodes (maybe didn't give them a fair try but didn't do anything), and he was on Mag/B6 for about 4 weeks - which we replaced with the more comprehensive multivitamin. He's been on probiotics through out (3 different varieties - all strep free). He's still on the grain free diet. We stopped Biocidin very temporarily about 2 weeks ago (he was awful while off of it entirely), and when we started it again we had 2 AMAZING days. But, he regressed back to having increased tics/OCD within 3-4 days of Biocidin being given daily again. Overall we've found that he is much happier while off abx and his GI symptoms have resolved (normal stools and no more tummy aches - yay!). His general anxiety (which in the past has been very problematic) is also fairly under control (or he's better at masking it?) and he's doing really well with separation anxiety too. But tics are still VERY bad (like non stop) and his OCD seems worse again (hearing swear words in his head, weird rituals around even body movement - if he moves his right are he needs to move his left, some finger licking, etc). The tics didn't resolve on Zithro, but I'd say they are worse now off of it and the OCD is definitely worse. His symptoms seemed to really flare up again in the past 10 days or so and have again coincided with new wiggly teeth. We introduced some Xylitol mouthwash last weekend. We have a dentist appointment on Monday to get his mouth swabbed for bacteria, and hopefully prescribed some abx mouthwash. I won't let them do a cleaning right now (although he could use one). I may be able to persuade the MD to try Keflex (she mentioned it), but she felt we should stay on the Zithro and introduce Valtrex before changing abx. However, I will have to wait to get in touch with her to get a prescription and I don't know how long that will take. I'm feeling really worried about his severe tics and the worsening OCD, and like I need to do something else ASAP! Wondering if the rage in response to the Zithro and the Biocidin previously was a herx if he has Bartonella/other Lyme. If thats the case on the current dose of Biocidin without abx, the rage seems under control (with just one outburst in the past 2 weeks), so I don't think he's herxing. My question is should we try Zithro again for a few days to see what happens? Or should I be patient in waiting for the dental swab, lyme testing and possibly wait for a Kefflex prescription from the MD? I've read Zithromax is not particularly effective on oral bacteria, and if teeth are his culprit wondering if Keflex may be more effective? MD suggested Keflex not Augmentin as the next abx to try so I don't think she will prescribe Augmentin. Im stressing out feeling like we are doing nothing effective while his tics and OCD are getting worse and worse.

The finger licking makes me batty. Like could these kids possibly pick a worse OCD behaviour when we need them to stay germ free! I've talked about clean hands and keeping healthy, so he gets it. Today he decided not to touch a nasty handrail in a bowling alley, saying "I better not touch it in case I lick my fingers". I feel have to balance keeping those dirty fingers out of his mouth and creating too much fear of germs so that he doesn't develop OCD around hand washing, or some other germaphobe manifestation! Where in Canada do you live MamaV? Who is your sons doctor?

Some people get excited about a herx thinking its a great sign that bugs are dying, but the reaction is because your loading the system with toxins, which it can't eliminate. We were having herx reactions in response to herbs (Biocidin) even in a low dose and to zithro which is why we suspect we are also battling lyme (still waiting for testing). We've added activated charcoal and I think its helping. MD's tend to go straight to the "kill" without supporting the whole system. The charcoal is safe and tasteless - just hard to hide as its black! It needs to be given sufficiently far apart from other meds/supplements.

I've signed! Awareness is so needed here in Ontario. Thank you for being so awesome!

Yes its an antimicrobial. It's replacing the Zithromax and seems to overall actually be more effective. I decided to challenge my Reye Syndrome fears and I put the Biocidin back in on Sunday and he had three amazing days! He was at 80-90% recovery! It was joyous. We spread the Biocidin dosage out, but my DH didn't understand my morning dosing instructions and gave it with his probiotic on Wed and Thurs (I think the two were cancelling each other out). Flash forward to today, and my son's tics are back at a level 10! OCD is also reappearing (albeit mildly) and he's back to being emotional. Now its a mystery to figure out does he just need a higher dose of Biocidin or probiotic because of the dosing error? Or is it something else. He's reporting wiggly teeth, but I'm not sure when they came loose. And complicating things my mother fed him jam for three days (Tues, Wed and Thurs) that contained glucose-fructose (corn and wheat that we know he can't tolerate. I feel like I'm chasing unicorns! We had a short glimpse of our sweet, sweet boy, and then poof, the tic monster is back.

Infection and that kind of onset definitely sounds like PANS/PANDAS. Any tics? I'd go back and get pushy with that doctor whose treated pandas and ask for abx. Argue with him that what can it hurt to give her a trial. You may not receive the right abx at first but if she responds you will definitely know you're on the right track. Your daughter's story is heartbreaking to read and I can only imagine the state you are in worrying about her. When we first figured this out the first parent with a PANDAS child I spoke to told me to get my badge on because I was the new sheriff in town - and that I'd have to lay down some law with doctors along the way. Go back and refuse to leave without a script!

Thanks to all of you who share here and make me feel less alone! We're new to PANS/PANDAS, having just been diagnosed in October (although think my son's been suffering since toddlerhood). Little backstory at 15 months DS 6 had a viral rash with fever that was not identifiable as any particular virus. It was insignificant at the time and cleared up quickly. A few weeks later he received his varicella vaccine and changed overnight. Stopped talking, began throwing wild tantrums, and had major separation anxiety from me. He also developed a shoulder shrug that I believe now was his first tic. The loss of language of course had me worried about ASD but he continued to point and maintained eye contact. I knew in my heart something had changed with the vaccine. At age two he began cyclical vomitting for no identifiable reason. The pediatrician dismissed it because he was still growing very well. We saw an ND who recommended we remove cow milk and gluten. We did and he improved. He continued to go through phases where we worried about ASD because he had rituals and didn't interact with his peers, but he still maintained good interaction with us throughout. At around 3.5 years he suddenly had an overnight change in behaviour again. Developed rituals around saying goodbye. Horrible night wakings. Was always seeking to do things over if they weren't done right etc. Looking back it was clearly OCD but it's hard to identify OCD from ASD in a toddler! He also had overnight separation anxiety again as well as increased general anxiety. The sudden change was dramatic. Our ped who was always dismissive referred him for an ASD assessment on the spot during a visit for an infected cut. I'd have to get his records but I think before this the kids had both had ear infections. We had also reintroduced gluten and dairy into his diet. I had an "aha!" moment realizing the diet could be causing not just the vomitting from before but his behaviour. We removed the gluten and dairy and he improved dramatically. We did food sensitivity testing and both were high. We thought we had solved the mystery and he did well on a stricter diet. A few months later he got HFM/coxsakie. Looking back it was that very same week he started his first obvious vocal tic (saying excuse me repeatedly). We never made a connection to the illness and chalked the behaviour up to anxiety over starting kindergarten. The tic resolved after 4-5 months. He went on to have overall gains with some bumps along the way. He had three episodes of urinary frequency following colds which lasted only a few days but were dramatic and his urine screens were always clear. He completed his ASD assessment after much revovery. We weren't so worried about him by that time and the school had no concerns either. His history raised some red flags so the assessment report was "inconclusive for ASD" and he was scheduled for a follow up assessment this year. The doctor said she felt he had social anxiety not ASD (she of course totally missed PANDAS!). His anxiety improved dramatically in senior kindergarten and we really ruled out ASD completely as he was doing great in all areas, other then some normal defiance and a few fleeting tics and some very mild obsessive behaviour. Flash forward to last August at 5 almost 6 years old, he lost his first tooth. Around the same time he developed strange rashes the doctor thought were from bed bugs (which have been ruled out). He started some mild throat clearing tics we didn't think of as tics at the time or pay much attention to. In September he received his MMR-V (varicella again!). He left the appt for the needle ticcing wildly. A week later he was still ticcing like crazy and totally different - hyper, defiant, had dark circles with puffy patches under his eyes, increased anxiety, back to having good bye rituals and separation leaving me. This also coincided with the start of grade 1 and an new teacher but I knew much more was going wrong than just some general anxiety. I googled, discovered PANS/PANDAS and had another aha! He was tested for strep but his titres are normal. However the only MD in the province treating these conditions, diagnosed him based on his history with PANS. No other tests have been ordered to know what his underlying infections may be, but it seems the varicella vaccine has played a role. He was prescribed Zithromax. We tried it. His OCD and anxiety seemed to improve somewhat but he continued to have tics. He was also quite emotional and had frequent rages while on the Zithro. Overall it wasn't nearly as effective as we hoped. He was on it for about 10 weeks. We consulted an ND experienced in PANDAS at the same time he received his diagnosis and started Zithro. On her advice we took all grains out of his diet, had him on Mag/B6, vitamin A and D, and changed probiotics. She later prescribed NAC (disaster for us with immediate rage) and Biocidin. The MD wanted to keep him on the Zithro and prescribe Valtrex on top. My gut instincts said no to that plan, as I felt the benefits from the Zithro weren't significant enough to warrant staying on while also layering on top the Valtrex with its scary list of possible side effects - like C Diff! The Zithro was also bothering his stomach and he had constant very loose stools. So we decided to try a more natural approach over the holidays. He did well initially coming off the abx. We increased his Biocidin to 5 drops (he weighs about 56lbs) but I was giving him all 5 drops in one dose misunderstanding I should have likely spread out the dosage. He sort of held at baseline off the abx in terms of his tics and anxiety and OVD but his mood seemed improved and his rages were less frequent. Near the end of the holidays he became a bit more difficult and defiant, and had some major melt downs. Then we started seeing a connection to epsiodes of rage with dosing of his Biocidin (which we were giving with his high dose Vit A and D). We had missed a few days of probiotics as well when he has a stomach ache and was resisting food. The ND thought the rage was likely a herx and as Lyme has always been something we've questioned (he's had chest and leg pains and weird tingling as well), she referred us to a Lyme literate colleague (who we are still waiting to speak to). She gave us activated charcoal to help with the die off. She also prescribed BiO 87 and BIO 88 nosodes (for many viruses and many bacterial infections). She changed his probiotic again, and introduced a multivitamin powder with mag and b6, A and D as well as manganese and a bunch of other stuff - he takes this in place of the other single supplements now. We introduced eveything new one at a time and separated his Biocidin from his vitamins to see if it was for sure the trigger for rage. We gave him the nosodes once but then didn't give them again as we tried to chart his reactions to the Biocidin. It for sure is the rage trigger now and activated charcoal brings him back down. It was just this week that I realized 5 drops is probably too much Biocidn. So Wed to avoid his rage epsiode I reduced his Biocidin to 2 drops. Like a switch he still had rage almost immediately after taking it. I wanted to take the Biocidin out at least temporarily as the rage is difficult to manage and I thought he could use some more detox before more killing. We noticed Thursday he had increased tics and was licking his fingers and I worried that skipping the Biocidin caused this, so as he was in bed I gave him 3 drops of Biocidin last night. When I picked him up from school this evening his tics were way worse and he's told me the finger licking he has to do when he touches something (so it's OCD). He was crying and emotional after school but calmed down with some dinner. He had a play date and was hyper. I began looking online last night trying to understand whether reducing his Biocidin dosage could cause the flare up in tics. The white willow bark in the formula contains anti inflammatory salicates - very similar to aspirin. So in theory it could increase the risk of Reye Syndrom. This freaked me right out!! I was up all night worrying about it and couldn't reach the ND, so I skipped Biocidin tonight. Last night all I could think was what if he's flaring up from a virus and I keep giving Biocidin and it's like giving aspirin and he gets Reye's Syndrome! But after tonight's bedtime watching him tic and lick his fingers I'm worried he needs the full 5 drops of Biocidin he was getting to keep his tics and OCD under control? Im worried his symptoms may be from reducing the Biocidin. I gave Advil tonight but it did nothing. Is it coincidence that the tics and OCD have flared up now as I tried reducing the Biocidin? I feel like the only one way to know is to give him 5 drops again and see if he improves. But now that I know about the salicates and risks, what if this is a virus he's responding to and I give it? It worries me to keep giving so much! I have several weeks of Zithro in the cupboard still. I'm tempted to give it tomorrow to see if it helps him, but it too has risks and I feel like I should yo yo him like this. Am I being paranoid about the Biocidin? Should I try 5 drops (in 2 doses now) tomorrow and see? Watching him like this is so difficult! Charting a course for him and trusting my instincts isn't easy either (my first child was stillborn. My mommy instincts knew something was wrong the day before she died but I felt I couldn't go to emerg saying I just had a "sense" something was wrong. The next day she stopped moving so I went in and that evening we watched her die on an ultrasound. The experience has left me afraid to ignore my own instincts, but then also sometimes with irrational anxiety that he may die so that I can't trust those instincts! He's admittedly had a few unnecessary trips to emergency in his life!) I know the risk of Reye's is likely super low, but with that history once a worry is in my mind I fixate on it. I don't know what to do?! Some sage, more rational thoughts from the rest of you are much appreciated!!

We started with cyclical vomitting in toddler hood and just made the PANS connection in the past few weeks (DS turns six tomorrow). Vomitting stopped with removing gluten and dairy but he's had epsiodes of severe stomach pain (of the sort that lead us to emerg to rule out something serious) following a cold, and lots of tummy complaints now during this major flare. There does also seem to be an anxiety connection as the pains are worse on school days!

I spent all last year asking about stomach aches. From what I figured out, lots of PANDAS kids seem to have migraine type things going on. We finally decided my son had abdominal migraines. Once he started taking magnesium supplements they decreased in frequency and severity. He will still get them (just not as severe) if he gets dehydrated, too hungry, or spends too much time in front of a movie or TV screen, especially if it is a fast action movie and he sits too close. If I catch it quick a dose of ibuprofen will do the trick. If not, I usually give him a dose of magnesium, ibuprofen and he takes an epsom salt bath with lavendar, rosemary and peppermint essential oils. Usually that will solve it and we can stop it from getting to the point where he throws up. He used to get them almost weekly, now it is more like one every other month. I had no idea this was linked to PANDAS either until I started reading past posts and soooo many people talk about it. I think the official name is Cyclical Vomiting and once I googled it I knew that I had found what he has. I have a number of cases of PANDAS presenting exclusively (at least initially) as cyclic vomiting. Gotta write them up! Dr. T