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MamaBeartoCharlie

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  1. 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
  2. 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.
  3. 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.
  4. 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!!
  5. 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.
  6. 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.
  7. 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.
  8. 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
  9. 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.
  10. 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?
  11. 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.
  12. 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.
  13. Oh and what was the dosage schedule - she's recommended 1000mg 2x a day.
  14. 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?
  15. 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!
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