We’re about 5 months into our Healing Lyme journey with my son Charlie and we’ve come a long way. Our day-to-day is now a mix of life before Lyme (which is wonderful!), walking on eggshells when we can tell it’s needed, the occasional (a couple times a week) emotional outburst/panic attack), and a daily routine of supplements, OTC meds, herbals, and antibiotics. It still takes all of that to keep his inflammation at bay and his moods and progress stable. His OCD is still very present, though not debilitating like it was before. He still has food restrictions. I describe it like having food aversions when pregnant — how something you used to love now turns your stomach and the thought of it makes you ill. That is how he reacts to some (many) foods now. He can’t even look at them. I might make him something he ate the week prior and then the next week he looks at it and flies into a panic. It’s getting better, but it’s still there.
He was able to return to school after over two months being homebound. It hasn’t been seamless. He is tardy every day but we’ve gotten a note from our doctor and it is built into his 504 to allow for tardies or absence due to his illness. And he still asks to stay home most Mondays — but don’t we all feel that way? 😉 He works at a slower pace than his norm, math is harder due to his brain inflammation, and he gets tired. And now that we’re doing online learning at home due to COVID, we’re dealing with new struggles. But we’re doing our best. Sometimes his OCD causes him impulse control issues (this happened A LOT at onset before we went homebound) but mostly he has done great. I’d say we have him 75% back to his old personality. We haven’t retested any of his infection titers yet but will likely do that next month, and we’re considering doing some mold testing as well.
One of the hardest parts of healing Lyme has been learning the healing process. There is so much more to it than taking an antibiotic. For people with chronic stealth infections like Lyme and mycoplasma (Charlie has both) the infection can hide and be hard to kill. Lyme is a spirochete and it can burrow itself into just about every area in the body: joints, liver, brain, heart, etc. Many of these bacterial infections also exist in a biofilm, which helps it evade the immune system. Also, when you do kill the infection you need to be able to detox that from your body or it can also make you feel really sick (this is called a herxheimer reaction, or herxing.) Herxing is a sign that things are dying or being released from their hiding places into the body. When the organs that detox can’t keep up your body releases cytokines that cause a lot of unpleasant symptoms (both physical and emotional). What the body couldn’t see before is now visible and the immune system goes into hyperdrive. And if you have autoimmune disease like PANS/PANDAS that can make things go even more haywire. This is why proper detox is so important.
Your body’s natural detox system does a great job under normal circumstances, but when you have chronic illness your detox pathways often need a little assistance.Two big ways your body detoxes is through sweat and stool. Since kids with Lyme (and most people with chronic illness in general) often aren’t feeling up to working up a sweat, this one can be tough. We do epsom salt baths that help work up a bit of a sweat. Many people do infrared saunas as well (we haven’t tried this). It’s also important to make sure there are 1-2 bowel movements daily — we push water, foods high in fiber, and keep an eye on stooling. When we notice a backup, I make a “poop smoothie” with aloe vera juice, senna tea (smooth move), prune or apple juice, magnesium citrate, or a combination. We NEVER give Miralax (I shared why here).
Another tool that has been huge for aiding our detoxing is the IonCleanse foot bath. Our LLMD has one at their office and we tried it a few times there and I saw such a difference in Charlie. He was more relaxed after using it, was sleeping better, was having more regular BMs, and his mood seemed to improve. The 1-2 days following his foot baths were always better. I reached out to A Major Difference to see if they would be willing to send us a machine to continue testing so I could see if it was a tool that worked for us with continued use and in combination with our treatment plan. I wanted to be able to see how it worked for us before I shared much about it or recommended it to other PANS/PANDAS families. We’ve now been using it three times a week for over two months and I feel like it has made a huge difference for us. I have also used it on myself and find myself more relaxed and sometimes tired (I use it before bed and sleep better).
Let me just say that before Charlie got sick I would never have imagined that alternative treatments and therapies would be something that I would be doing, let alone recommending. But honestly, when traditional medicine and doctors failed us by not believing me (and even gaslighting me) and dismissing our positive test results, I became more open to other avenues of treatment. Because honestly, they were my only avenues. Had I done what the infectious disease specialist at Children’s hospital advised, I would have gone back to psych (which we had already done) and never treated Charlie’s Lyme. I can’t imagine where we would be now or years down the road if I had listened to that terrible advice. With that being said, when we first started using our foot bath and I shared about it on Instagram I had more than a few people commenting negatively and skeptically. And I get it. But seeing is believing, and I have seen such wonderful positive changes and improvements after using ours. On the nights that Charlie does a foot bath before bed, he has his best nights of sleep following — he did one last night and slept 15 hours! I don’t think he moved all night, honestly. And when these kids are trying to heal from these awful stealth infections and brain encephalitis, sleep is so important.
The company explains so much better than I can how the IonCleanse by AMD works, so I would advise you to do your research and read more about it here. But I am always happy to answer questions. Getting one is an investment, but when you have a kid with PANS/PANDAS and Lyme you already know that everything that goes into their treatment is expensive, and all you want to know is “will it work?” This has worked well for us so far. I’ve heard of people with other autoimmune conditions, ASD, other behavioral disorders and developmental disorders, as well as other things like heavy metal or mold toxicity benefitting from this treatment as well. If you are on the fence about buying one but have questions, please feel free to reach out via email!
Do you have any other Lyme or PANS related questions I can answer? Or questions about the foot bath or other treatments we’ve tried? Don’t forget to read my other Lyme and PANS posts if you haven’t already. You can find them here.
And thank you again to A Major Difference who provided this foot bath for us to test out so we could see if it was a treatment that I could share and recommend to my fellow PANS/PANDAS and Lyme parents.
Hi there! How are you doing? Are you feeling the Coronavirus / COVID-19 anxiety? As a mom of children with wonky immune systems (thanks to the autoimmune disease PANS/PANDAS + Lyme Disease and co-infections) and a person who struggles with anxiety myself, I’ve had to balance being prepared and aware with turning off the news and trying to focus on things here at home and staying positive. I think that, for me, I feel better just surrendering to our circumstances and hunkering down at home with my family, taking deep breaths, and trying to find the positives in this slow down. I know my husband and I are very lucky because we work from home and are able to do this without too much hardship. I feel for those of you who are facing bigger challenges professionally, economically, and logistically.
For those who will be quarantining at home with kids, I thought I would share the activity list my kids and I made that we’ll refer to when we feel bored or to help keep a bit of structure to our days (my PANS kiddo especially does better with structure because it helps keep his OCD at bay when he’s busy). So here’s our list, along with links to some of our favorite board and card games:
- play with sidewalk chalk
- outdoor play-doh
- nature scavenger hunt
- paint rocks for garden
- garden prep and other spring yard jobs
- plant early veggies and learn about them as we go
- plan our herb garden
- plan our flower gardens
- scooter rides
- family nature walks/visit metro parks
- hop-scotch (can do multiplication hopscotch for older kids)
- bike rides
- backyard nature study
- Mr. Fox
- wash the car (if warm enough)
- bug collecting
- plant identification (I use PictureThis app)
- make a gnome/fairy garden
- clean up/open sandbox if weather permits
- set up birdhouse and fill bird feeders to do some birdwatching — can ID birds with our bird book
- outdoor painting
- backyard DIY obstacle course (can be simple)
- plant a tree
- do a weather study
- water play once warm enough
- write a story
- pick a topic and then research/read about it (could also ask kids’ Alexa)
- listen to kid podcasts or audiobooks
- break out old lego sets and magna tiles
- write letters to family and start sending postcards to pen pals
- Nugget fort/play or build a fort if you don’t have a Nugget, set up a tent, etc.
- GoNoodle (body movement)
- CosmicKids Yoga
- dance parties!
- indoor treasure hunt
- Charlie’s indoor quidditch game or homemade Minecraft board game
- invent other new games
- organize/clean rooms
- save cardboard boxes from the many deliveries we’ll have to avoid stores and come up with creative ways to use them. Build a robot, make a playground for the cats, etc.
- Go through old clothes and see what fits and what doesn’t. Make a donation bag. Also go through old toys while playing indoors at home and put in a donation box. Explain where our donations go and how others enjoy them and environmental benefits to second-hand goods.
- chores (make it a game or contest)
- workbooks/activity books for littles // homework for big
- marble run
- cars/car tracks
- reading / read-to-self
Non-Animated Movie Ideas for Bigger Kids
- The Goonies
- Willy Wonka & The Chocolate Factory (original)
- The Dark Crystal
- The Greatest Showman
- Akeela and the Bee
- The Sandlot
- The Mighty Ducks
- Flight of the Navigator
- The Sound of Music
- Wizard of Oz
- Harry Potter(s)
- The Chronicles of Narnia
- The Princess Bride
- Mary Poppins
- Little Giants
- Honey I Shrunk The Kids
- The NeverEnding Story
- The Jungle Book (live action)
- Lion King (live action)
- Beauty and the Beast (live action)
- Pete’s Dragon
- The Karate Kid
- Back to the Future
- Space Jam
- Rookie of the Year
- School of Rock (older kids)
- Spy Kids
- Free Willy
- Cool Runnings
- Jumanji (old and new)
- Mrs. Doubtfire (older kids)
- Kindergarten Cop
- Star Wars (originals and prequels are best for kids)
- Jurassic Park (Jurassic World for older kids as well)
- Indiana Jones
- look for other options on Disney+
These are ones that we have/would let our oldest son watch. He’s 9 but a bit more of an advanced movie lover and won’t really watch animated films anymore. He will flat out tell you that his favorite directors are George Lucas and Steven Spielberg, and he pays no mind to swear words — it’s all about the art 🙂 That being said, we may feel ok with letting our kids watch something that you would not, so be sure to check out the movie at Common Sense Media or on IMDB first. Please don’t come blame me when you let your kids watch The Goonies and then they start using new words afterwards 😉
Free Learning/Activity sites:
- Scholastic: https://classroommagazines.scholastic.com/support/learnathome.html
- Prodigy: https://www.prodigygame.com
- Cool Math For Kids: coolmath.com
- Splash Learn (math)
- PBS Kids (for ages up to pre-K) https://pbskids.org/
- ABC YA (games for both math and literacy, will also read books aloud): http://www.abcya.com
- Read Works (literacy for K+) http://www.readworks.org
- Common Lit (geared toward higher grades) http://www.commonlit.org
- Time for Kids: timeforkids.com
- Typing Practice: typing.com/student and typing.com/typinggames
- Minecraft, education edition: http://education.minecraft.net
- Crash Course
- Who Was? App/Site
- Nat Geo Kids https://kids.nationalgeographic.com
- Time for Kids
- Smithsonian for Kids
- Ted Talks
- Duolingo (learn a language for free!)
- How Stuff Works
- Nasa Kids’ Club
- Code Academy (learn to code free)
- Growga is offering free yoga classes and meditations for kids online
- Mystery Science has a limited free lesson membership
- Use your library card to download books for free from apps Libby (I use this one for myself and always check for books here before I buy on Audible) and Hoopla
- Classics for Kids (music games)
- Brain Pop Arts and Music
- The Good and the Beautiful: free language arts worksheet pdfs for download
- Lunch Doodles with Mo Willems (daily online doodling with the author of the Pigeon books!)
- Khan Academy: free learning site
You can also use code SCHOOL7771 for free access to ABC Mouse, Early Learning Academy, Adventure Academy, and Reading IQ while schools are closed.
Virtual Field Trip Ideas:
(I did not create this amazing list, just sharing it!)
15 Broadway Plays and Musicals you can watch on stage online:
We can do this! Stay safe and healthy everyone. xx
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Driving with kids: it can be fun, loud, crazy, and sometimes miserable. Balancing everyone’s needs in the car while actually driving a car can be quite a feat. On top of the responsibility to keep your kids safe while on the road are the day to day demands of caregiving that can leave you hurried and distracted in your normal routine. While you may not have control over other drivers, you can make sure that children are properly protected in your own car. Here are some things I do or use to keep my kids safe while we’re driving in the car. Read More
This post couldn’t have come at a more perfect time – I’ve just gotten over the flu, my older son has a double ear infection and pink eye, and I’m just holding my breath to see what the baby ends up with. It seems like so many of us are dealing with a particularly nasty cold and flu season. And as frustrated as I am with the sickness, I can’t help but consider us lucky: lucky that this is the worst we have it, and lucky that we have healthcare that enables us to go to the doctor and get medicine we need. I kid you not, I’ve been to the pediatrician almost weekly for the last two months.
So I thought I would share some of my tips for surviving this germ-filled season (besides taking your kid out of preschool for the duration, which I’ve been tempted to do myself…)Read More
*I am not a doctor and this post is not meant to give medical advice. I’m just a mom who has had to become a medical advocate for my child, who has learned a lot and started him on a path to healing, and who would like to share what I’ve learned to help other suffering families.
The most frequent question I receive from parents who are finding my family’s story about PANS/PANDAS and Lyme is “How do I get my child tested/diagnosed/treated for P/P?” It seems like a really simple question, but the answer is incredibly complicated. So I thought the answer deserved its own blog post because it is multi-layered.
You’ve likely found this post because you already are following along with my family’s story (or were already a blog reader) and want to know more, OR because you’re searching for answers yourself because you have a child who suddenly started exhibiting very extreme behaviors like anxiety, rage, OCD, food restrictions, and more. That was me just 5 months ago, although it feels like years worth of developments, knowledge, and treatment has occurred during that short time. It took me almost 2 months to realize that Charlie’s behaviors were caused by PANS/PANDAS — that is a really long time when your child is in pain, depressed, suicidal, raging (and I mean RAGING, like they are possessed by demons), stuck in a constant cycle of compulsive thoughts and obsessive behaviors (OCD), having sleep disturbances and food restrictions (like barely eating, only eating very specific things, etc.) I recognized the OCD right away and he was quick to receive a diagnosis of OCD. Unfortunately, our pediatrician and behavioral therapist did not explore anything further than that — no questions regarding other behaviors, recent illness, or anything else. It took Charlie deteriorating more and more for me to be certain there was more wrong and to push for answers. Those two months were critical and had he been treated for PANS/PANDAS earlier things might not have gotten so bad for him.
So if you’re searching for answers because of your kiddo’s sudden unusual behavior (or suddenly increased behavior), you can compare what you’re seeing with these criteria for PANS/PANDAS:Read More
This is a tough post to write, but one I feel compelled to share (with my son Charlie’s permission) due to the extreme struggles we’ve been through and the lack of answers and experienced physicians out there treating kids like Charlie. I’ve alluded to some health issues going on at our house, but it really didn’t begin to touch on the hell we’ve been going through for a few months. Charlie is a smart, kind, sensitive, and creative kid. He’s funny and enjoys life. Or he did before this August.
Charlie has never been what you’d call laid back (he comes by it honestly 🙋🏼♀️) and has definitely shown signs of social and performance anxiety since he was 4 or 5. But a few months ago — almost overnight — he started to show some new behaviors. Extreme anxiety about things that might have bothered him only a little before. He became very irritable, controlling and often didn’t want to go do anything outside of the home. Then he started to fight us on leaving the house at all. By August we realized he had developed full blown Obsessive Compulsive Disorder. When we would push him to leave the house to go to a doctor’s appointment or swim class he started flying into rages, screaming, calling me names, and getting physically aggressive. With guidance from his pediatrician and therapist we started treating his OCD with an SSRI and Exposure Response Prevention (ERP) therapy, which is the gold standard treatment for OCD. At first he could participate in therapy, and then in school when we started the next week. By the following week he was showing a lot of hyperactivity and impulsivity at school (also a new behavior we had never seen before), and even more aggression and rage at home. His dose was increased. No improvement. Dose was increased again. Rage went through the roof. Things got really scary. We ended up at the ER and then admitted to Nationwide Children’s Hospital where they clinically diagnosed him with SSRI activation syndrome and discontinued his Prozac, switching to a new SSRI. They didn’t run any tests or labs. He had to wear a special color hospital gown which indicated mental issues and we had to have an aide in the room with us at all times. For two days and two nights. But while in the hospital his extreme hyperactivity continued. He was not himself at all. We started seeing a psychiatrist who took over his medication protocol and his therapist for ERP and behavior management. Things continued to steadily decline. I knew in my gut that something else was wrong. I could tell the meds weren’t helping and I was losing my sweet boy. I didn’t recognize him 80% of the time. His eyes were dead; he wasn’t there. I took on sorting him out as my full-time job. I listened to every podcast, read every article and text I could find, joined and searched posts in every OCD parent support group on Facebook. OCD consumed Charlie’s life and that of our whole family. But it was more than OCD — we just didn’t understand that yet. Read More