2 PANS kids fighting lyme and coinfections, our journey to healing

Returning home from Lyme Laser Treatment Centers of New England

Returning home from Lyme Laser Treatment Centers of New England Day 75 We have been home now for 5 days and I can honestly say the adjustment was slightly chaotic. We haven’t really unpacked yet but supplements still must be given on time, as per our previous schedule. It definitely has taken more than a couple of days to get back to a routine, now it’s Saturday and we finally executed our schedule perfectly. I have managed to source some of the pieces of the program that we would like to continue at home, so while we are technically finished at the clinic, we will maintain the supplements, footbaths, exercise and diet schedule for many months going forward. We, of course, brought a large bag of supplements back home with us, but they have been reduced now we are in maintenance mode. Overall, the progress continues. Both kids are adamant they are happy they did the program, annoyed at missing summer with their friends but feeling about 70% better than they did when we left.  I am a little nervous because if we were in MA still, we would not be in maintenance for another week or two. I am praying it doesn’t set us back because we left early. Dr. Wine is confident in our recovery from here as long as we maintain the program, but I have had so many false starts during our journey, I am always just really nervous about going backward. So week 11, now behind us, heading into week 12. Really nothing drastic to report, just more of that steady climb upwards to feeling healthier. If you ask my kids, “do you think it was worth it?” they now reply with a resounding “YES!!” which makes it so worth the sacrifices we all made to get there. They are definitely feeling better each and every day. One still has frustration and is still experiencing some obtrusive/obsessive thoughts, the other is feeling nauseous on and off, which has been an ongoing issue. We think it is related to candida and food intake. We will hope that as that resolves (Dr. Wine’s protocol addresses that), nausea starts to remit as well. Anyway, first two days back to school went phenomenally well for both. The one with memory issues was happily surprised to find that everything stuck during the first days of classes, this was one of our greatest hopes going up for treatment. The memory issue in conjunction with poor processing has been a great source...

Interrupting regular programming…

I am interrupting regular programming for a second… Chronic Lyme and PANS/PANDAS and Auto/Neuroimmune Encephalopathy My children and I are in NE treating Lyme, this is true, but the chronic condition my children are diagnosed with is actually PANS (Pediatric Acute Onset Neuropsychiatric Syndrome, OR as it has morphed across the internet from the original moniker – Pediatric Autoimmune Neuropsychiatric Syndrome). This basically means my kids both have neurological and physical challenges associated with their illnesses. I created this document for the parents who are find their way to our Facebook Group. We, as an organization, are currently working toward better recognition of PANS with doctors, schools, and therapists in South Carolina (North Carolina and Virginia) and I thought this might help anyone who finds my blog quickly get up to speed on the acronyms and message board topics should they wish to explore the topic further. TEN THINGS A NEWLY DIAGNOSED PANS PARENT NEEDS TO KNOW Understand the diagnosis and acronyms: PANS stands for pediatric acute onset neuropsychiatric syndrome, this acronym is also sometimes expanded to pediatric autoimmune neuropsychiatric syndrome. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) is a subset of PANS. There is also another (older) acronym – PITANDS, which stands for Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorders. “The NIMH Investigators discovered that the OCD, tics, and other symptoms usually occurred in the aftermath of a strong stimulant to the immune system, such as a viral infection or bacterial infection. The first cases were given the name PITANDS for Pediatric Infection Triggered Autoimmune Neuropsychiatric Disorders. The first reported cases of PITANDS followed infections with influenza, varicella (chickenpox), and streptococcal bacteria (strep throat and scarlet fever). (See Reference #3 for descriptions of the PITANDS cases.) Later cases were reported to occur in association with Lyme disease and mycoplasma infections (“walking pneumonia”). The NIH investigators chose to focus on OCD symptoms that occurred after streptococcal infections (the PANDAS subgroup) because of a connection between OCD and Sydenham chorea, the neurological form of rheumatic fever.” https://www.nimh.nih.gov/labs-at-nimh/research-areas/clinics-and-labs/pdnb/web.shtml Who is Susan Swedo, MD? “Susan Swedo is a researcher in the field of pediatrics and neuropsychiatry, and since 1998 has been Chief of the Pediatrics & Developmental Neuroscience Branch at the US National Institute of Mental Health.” Wikipedia. Swedo wrote the first paper on PANDAS.in 1998. “In the early 1990’s, investigators at the National Institute of Mental Health (Drs. Susan Swedo, Henrietta Leonard, and Judith Rapoport) were doing studies of childhood-onset OCD and observed that some of the children had an unusually...

New England Day 61

New England Day 61, Lyme Laser Treatment I am updating a little faster than is typical for my crazy hectic schedule simply because we finally have good things to report. Yesterday, on day 60 –  B told me, “I am so happy with how much progress I have made since I have been here, I can’t tell you why I feel better, I just remember that this is not how I used to feel!” Add to that, his long term memory is coming back, sleep is coming easily and I think we may have finally started the shift we have been hoping and praying for or at least we are heading in the right direction. Additionally, the other one is consistently waking up without the trademark black eye circles (typically an allergen but to what we have never been able to pinpoint), and we seem to have the hypoglycemic rages under control. We really enjoyed a full day yesterday of shopping and she complained of zero foot pain. Those feet have hurt all the time for a very long time and typically, after an hour or so, she will be so exhausted she will want to go home. Not so yesterday. We have slowly been increasing her stamina by walking around the campground three times a day so perhaps that is helping build tolerance but overall it was really a good day yesterday, at least on those levels. Anyway, another full day of shopping, school looms and every single thing must be new for their return. I am so happy New Hampshire is super close and tax free every day 😉 wish us luck on our quest to complete that shopping list. Happy weekend everyone. Share this:Click to email this to a friend (Opens in new window)Click to print (Opens in new window)Click to share on Twitter (Opens in new window)Click to share on LinkedIn (Opens in new window)Click to share on Reddit (Opens in new window)Click to share on Pinterest (Opens in new window)Click to share on Facebook (Opens in new window)Click to share on Google+ (Opens in new window)Click to share on Tumblr (Opens in new window)Click to share on Pocket (Opens in new...

Things I learned in MA

Things I Learned in MA… Thinking this trip through before we left I knew there were going to be additional challenges over and above managing the kid’s behaviors and treatment compliance. First of all, I am scared of the dark, secondly, I am afraid to be alone at night while I sleep! Two major obstacles especially for someone who was considering living on a campsite, away from landline phones, 24/7 alarm monitoring, solo with two kids who require 24/7 management. The whole idea had my imagination in overdrive. Not to the point where I considered not coming, but I knew it was going to be a real test of my own strength and determination during the three months we would be here. Honestly, with less than 2 weeks to go, I am pleasantly surprised and a little impressed with my ability to buckle down and just make the best of what we have done. Weirdly it has also been far easier than I envisioned and certainly not even close to as scary as I initially imagined. While it is true the cooking al fresco and the laundromat situation drive me insane, conversely, the simplicity and small space make any house related stress impossible. It also turns out I do know how to change gas bottles, light pilot lights, replenish toilet enzymes, and even remember to purchase biodegradable washing soap. To my credit, I have fixed beds, hung tarps, taken care of copious rain related issues, made campfires and even chosen to re-caulk the bathroom fittings – a job poorly executed by the fabricators of our little Jayco. I have totally proven to myself that I can clean, cook and live quite easily in this tiny space all while taking care of these two whirling littles by myself. Plus my neighbors are awesome. Being so close to the beach, the campsite is full of “seasonal” campers, these folks come every year and stay for the summer. Most are long time residents here and there is a real community of friendly, fun and hospitable folks, which makes it all a little more enjoyable. … but honestly, I hate it. I don’t mean I hate parenting solo or taking care of everyday challenges, or even camping, I mean I just hate being away from my husband. For sure, I already knew that I relied on him for plenty at home. He thankfully takes care of things I can’t while I take care of the kids and sometimes that’s a lot because my health...

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