Dr. Richard Frye Presents Understanding The Overlap of PANS and Autism –
Mold Testing as well as Mold Remediation
(Finding Mold is Only Half the Battle)
Mold testing and mold remediation are never far from my mind. Now we have left Florida behind and are happily back in our own beds we should be elated, except the mold remains a constant headache and we must deal with that situation sooner rather than later.
Now I am back, I am determined to resolve the mold in our house that has caused some health challenges. This has been an ongoing issue for almost a year now but has become more pressing because right before I went to Florida, I had a dermatology appointment to have an area on my forehead biopsied. This area has been raising, scabbing and healing for several months but it is (or it was) time for it to go. I say was, because while we have been away, it has gone anyway. No trace of where it had been. All I can think is that staying in a house with filtered air potentially [Read more…] about Mold Remediation
Prepare to send your child with PANS, PANDAS (Encephalitis)
Back to School…
This can be a terrifying thought, but school begins exactly 4 weeks from now and we all want to be ready.
My best advice for anyone going through this battle? Understand school is rough for a lot of kids, let alone a child with encephalitis. A kid with PANS (PANDAS) has to battle fuzzy thinking, poor memory, dysgraphia, the need to go to the restroom 27 times a day, poor focus, loss of executive function skills, tics, compulsions, obsessions, separation anxiety can make school seem almost impossible. This may have been a child who was on the honor roll or an average student, it doesn’t matter, this disease can impact any of our children without warning. It’s nothing they did or didn’t do, and it certainly is not their fault but now they have to manage in a system that doesn’t quite understand what happened to them or how to help them. The goal for a parent now is not only for their child to remain in school but also to help them gain some traction in their studies.
Do you have an IEP or 504 in place?
If you have a child with PANS (PANDAS) and are worried about the upcoming school year, call the district offices now and schedule an appointment to talk about obtaining or adding to a 504 plan, or an IEP or even to request that school perhaps begins with homebound or intermittent homebound services already in place as the best option. You have to educate yourself now to make sure that the plan is already in place before your child walks back through those doors for their first day back to school. My favorite books for a child with PANS (PANDAS) in a school setting are
I think both of these books are superbly laid out but for our team table talks “PANS, CANS and Automobiles” proved slightly easier when we used it as a visual aid in our meetings. My yellow-highlights throughout each section helped the team build on an already comprehensive and goal-oriented IEP. The “Handbook for Educators” has been purchased over and over as well as it has proved a perfect resource to leave with members of our IEP team. We have been lucky as his team has continued to try some creative strategies for our kiddo struggling with post-infectious autoimmune encephalitis.
How to Navigate the often Complex and Confusing IDEA System of laws and make it work for your child.
In terms of IEP versus 504 requirements and understanding the laws that go along with those requests, we first purchased Wrights Law books in 2014 and in 2018, after we attended a live Wrights Law presentation, we got nice new, updated versions. We find we need to refer to these texts often.
This particular book is smaller and easier to read than the two above but a great little real-world reminder with real-life situations that other parents have encountered and what they were able to do about it.
I would love to hear your thoughts on other resources that might be available, please share creative ways you found to keep your child in school and learning while recovering from encephalitis.
#PANS #PANDAS #postinfectiousautoimmuneencephalitis #PAE #school #IDEA #IEP #504
Suspended and what that means for us…
sus·pend səˈspend/Submit verb past tense: suspended; past participle: suspended [from school]
1. temporarily prevent from continuing or being in force or effect. “work on the dam was suspended” 2. hang (something) from somewhere. “the light was suspended from the ceiling”
Not long before the anticipated end of the school year, we had what one might term “a tough day”. I got a call while in the carpool line and I was asked to come into the office. While I have had many of these calls over the years, I had no idea this one was more serious than the others. More serious than the time he put paperclips in the electric sockets, more serious than the time he ate every piece of paper they placed in front of him, more serious than his books hidden behind the fridge in the resource room, more serious than him running through a parking lot after escaping summer camp, more serious than hiding in closets crying incoherently while they try to make him do his work, no now he is 14 everything is more [Read more…] about Suspended From School
What’s life like after treating Lyme?
January marks month 7 on Laser Lyme protocol.
Where are we now? It’s been an interesting few months, new moons, full moons, Christmas, Halloween, New Years, quite the plethora of reasons to expect hyperactivity, tiredness, and general backsliding. To keep that in check, we still remain true to our NELL protocol, but with the kids back in school, hubs back to work and my commitment to campaigning for legislative changes here in the state, it could easily slip away from us.
That aside, where are we now? Are there regrets over that long summer in the camper in NE? Have we seen any further progress? How are we maintaining?
Well in true and typical fashion nothing is very easy or predictable but we are still sitting around 80 & 85% – we haven’t made any real progress forward in the last few months really but the good news is – we haven’t gone backward. That alone is worth celebrating. We have continued to follow NE Lyme Laser protocol because it is working for us (although we don’t do the exercise and oxygen every day, or the footbath every week, and we have also not been to a chiropractor since we got back), but we do take the drops religiously every day, 3 times a day to keep the Lyme at bay. We have also chosen to work with a nutritionist (Real Food Rebel) to try to address some other areas we know we have challenges in. We completed hair testing and in light of that Brenda at Real Food Rebel has determined a targeted supplement regimen for us. Now we follow a program for healing their digestion challenges. My kids continue to do “ok-ish” on both of these programs combined. The rashes are going or gone, skin is becoming clearer and overall the kids are functioning at home and at school, which is helpful for us all. One little bump in the road is that we are having to remove the amantadine that proved so beneficial in the beginning. If you read back through old posts, after much trial and error (actually 15 different trial and errors) our doctor had prescribed amantadine – just to try and affect some positive change in impulse control. Starting amantadine is what we now refer to as a turning point for our family. Initially, we didn’t see much progress on just 100 mg once a day but once we went to the twice-daily dosing schedule, we started to see big changes. Later a tonsillectomy and adenoidectomy proved equally as beneficial and finally, we got to a point of stability which then enabled a return to school – so life changed drastically from those two interventions for sure. Anyway, around October or November last year an intermittent arm/hand tremor started to became an everyday occurrence and it was decided the time had come to remove this NMDA antagonist/antiviral/ dopamine agonist drug. Tremors can be a side effect of this medication. Never the less, it is bittersweet (it helped so much but no one wants their kiddos on long-term pharmaceuticals) to let it go because we had seen that huge progress using the Amantadine (rationale for use). It can also be tough to take this particular medication away so we are titrating down very slowly. We know that irritability, depression and suicidal ideation can be an issue with amantadine (both on it and coming off), so we are being cognizant that we might see positives and negatives in those areas before we are completely done.
As a parent, navigating all this information is overwhelming sometimes, I had heard the terms “NMDA antagonist” and “dopamine agonist” before all this started but it wasn’t my go-to in any conversation and I probably couldn’t have used either in a sentence. It was never anything I thought I would need to know, but now these terms and definitions are added to the ever-growing medical vocabulary tucked inside my memory banks. I feel like these definitions must be firmly solidified in my head because, during conversations with medical providers, we need to be semi-knowledgeable enough to agree with treatment plans which sometimes have to happen on the fly.
So what’s next?
It turns out that life after (or with) LYME often centers around mold, and this is now the new rabbit hole we have decided to chase down. I am exhausted and would really prefer to snuggle under my duvet and ignore any more LYME, PANS, Mold or infectious disease processes, seriously I really don’t know whether to laugh or cry at the thought of starting a new project all over again. My house has been tested 3 times in the past year, and we have high levels of Aspergillus penicillioides amongst other fun stuff. We only found this out after much convincing to test from friends who all agreed more had to be going on. I really didn’t believe there was mold in my house because A: We have no active leaks and B: We had completely renovated the house 5 years ago when we moved in. I was positive there was no mold, but to stop the questions, I ordered an ERMI test from Mycometrics . No one was more shocked when the results came back really high and Aspergillus was the worst.
We set to cleaning every room with a combination of water and Everclear, we also threw away hundreds and hundreds of items that might have been contaminated by mold. We painted rooms with low VOC, mold resistant paint, and we even purchased an HI TECH machine along with 2 very large unattractive Dri Eaz air scrubbers, but the mold still remains somewhere in this house. Sure, our ERMI scores have gone down significantly but not yet low enough to be considered “acceptable” to live in for someone with a Chronic Inflammatory Response Syndrome (CIRS), which we seemingly have. So – as exhausting as it is – we plan on using a different company (Conflict Free Mold), to take new samples. This will mean I can afford to do every room individually. Prior testing was one sample from multiple rooms combined on the same cloth, we did it this way simply due to cost. Unfortunately, this means that while I know I have mold and what type, I have no idea at all where the mold is concentrated or where it has spread in the house. So, pith helmet on, flashlight in hand, crawlspace here we come… not really, I will purchase a kit, and send off 10 samples (one from each room) and see if we can finally pinpoint where our problem area or areas are.
This journey was never going to come down to just one thing I suppose. It’s been caused by many things stacking against us for a long time. Lyme may be one of our triggers but the post-infectious autoimmune encephalopathy we are struggling with now, is the end result of many, many, many things, or at least it is for our family. This may help explain further – Moleculara. The longer this goes on, the more we find out, the harder we must work to resolve it. We want what everyone else wants – our kids to be as healthy and happy as possible in this life. Mold is toxic, gene SNPS create issues, bacteria, viruses, unhealthy diets, allergens and environmental toxins aggravate an already stressed immune system but we still want the best for them. So, for now, all we can say is:
“Mold!! – Challenge accepted.”