Tuesday, March 24, 2020
A little about Charlie…
Charlie is my 11-year-old special needs kiddo. He was Lead-poisoned in utero, and also was exposed to Lead in house dust as an infant and toddler (in our 1905 urban home and neighborhood). Charlie has a lot of issues, but his biggest diagnosed issue is “severe” (extreme) ADHD. Another issue that Charlie has [likely significantly impacted by his Lead exposure and the age at which he was exposed] is that he has quite a bit of dental decay — in spite of relatively good dental hygiene.*
*Lead bio-mimics calcium. What this means is that if Lead is present in the blood stream it can be absorbed (in the place of Calcium) by rapidly growing normally-calcium-dense biological structures in the body. If a child’s brain is developing at the time (as with Avi who was 7 months old at the time of poisoning) the result of Lead poisoning can be brain damage. If a child’s adult teeth are in a period of accelerated growth at the time (like when a child is 2 or 3 years old – as Charlie and A.J. were when they were poisoned) then their teeth can absorb the Lead and they end up being more prone to having cavities – in spite of good dental hygiene.
As a result of Charlie’s disabilities (and his dental issues), we have to go to a dentist who specializes in working with kids with various concerns. We have had many many dentists over the years that simply did not understand how to work with our children (and often suggested complete sedation – which in my opinion is ridiculous, overused in dentistry and very often very dangerous with young children!), and finally – about four years ago – we found the perfect local dental clinic that worked well for each of our younger three children and each of their various special needs (as it relates to their dental treatment).
Appropriate dentists for our kids are not covered by our insurance.
While we have had public health insurance for our kids for most of the past four years, the dentists covered by this publicly-funded insurance never include any special-needs-focused dentists – that know how to work with non-neurotypical children, like ours. As a result, we have needed to pay out of pocket for all their dental work during this time (in spite of the “full coverage” provided by our insurance.)
Note for my readers who live elsewhere on the planet: This is just one way American parents of special needs children get (and stay) poor – because appropriate medical services (including appropriate dental and most therapies) for their children more-often-than-not need to be paid for “out-of-pocket” (paid directly by the family because insurance won’t approve any coverage). Denied health services for our family have ranged from appropriate dental care for each of the boys, to physical therapy for A.J. when he was younger, to an updated full neuropsychological assessment for Avi – which is supposed to be done every three years because of his brain injury, but has not been approved by our insurance even once.
Living in relative poverty for years doesn’t help…
In most years, we have been able to keep up with this (our sons’ dental work, including regular cleanings, x-rays and checkups) — but 2019/2020 has been particularly difficult, as our focus has – by necessity – been on feeding the children and keeping the lights on.
When we took Charlie (along with his brothers) to the dentist a few months ago for an exam, x-rays and cleaning, we were informed he needed several fillings (between my three boys they needed a total of more than $2,200 in treatment!). Since then I have been working my butt off to try to earn the money to pay for the fillings (for all three boys) — and knew I would finally have some funds available this month (from my December advertising income), so about a month ago I called and made an appointment for Charlie to see the dentist on Tuesday, March 17th – a week ago. They were going to do another cleaning and get to as many of his cavities as they could on the 17th and then we were going to schedule a follow-up appointment shortly after for anything they couldn’t get to in that first visit.
And then everything went to hell…
- March 10, 2020 – Tuesday: A.J. (17) & Avi (15) went to the dentist and each got teeth cleanings and some fillings taken care of. The dentist agreed to let me pay some now and some later so we could fit them both in (yay!). I was so happy that we were getting all of this done now (and out of the way — with all that was going on in the world!).
- March 12, 2020 – Thursday: We got a confirmation e-mail from the dentist confirming Charlie’s appointment for March 17th.
- March 16, 2020 – Monday: Then, on the afternoon of the 16th (last week, the day before Charlie’s appointment) we were contacted by the dentist saying they needed to cancel his appointment because of the new government orders restricting dental work to emergency work only due to #CoViD-19. I called the dentist’s office back immediately, and explained that at this point it was an emergency — as he has pain in at least two of his teeth (sensitive to both hot and cold), and a really bad cavity in his front tooth that needed to be addressed immediately! They called back later that day, and said that one of the dentists had agreed to come in and see him for an emergency appointment on Monday (March 23rd, 2020) at 8:00 a.m.
- March 18, 2020 – Wednesday: We got a confirmation e-mail for Charlie’s appointment on the 23rd.
- March 19, 2020 – Thursday: We got another e-mail from the dentist’s office saying “all appointments have been cancelled”. We tried to reach them to see if this also meant Charlie’s emergency appointment for Monday – but we couldn’t get through to anyone [and they are closed on Fridays].
… and so, yesterday, we took a risk and went to the dentist anyway….
#FunFact: During the Zombie Apocalypse the kids have been staying up until midnight (or 1:00 or 2:00 each morning!) and waking up around 11:00 a..m. (or noon) each day.
Under normal circumstances getting Charlie up at 7:00 a.m. is nearly impossible (and these aren’t normal circumstances!), but I still agreed to drag him out of bed for this 8:00 a.m. dentist appointment, because the timing was so critical to save his front tooth! So even though we couldn’t reach the dentist by phone over the weekend (to confirm whether his emergency appointment was cancelled or not), we decided to roust Charlie out of bed yesterday at 7:00 a.m. and head to the dentist, in the hopes that he could still be seen [he was possibly on the verge of losing nearly half of one of his front teeth – so it was really a true emergency!]
As I was driving to the dentist, I had my husband try to reach them by phone to see if they were still going to keep our appointment (or if the second #CoViD-19 appointment cancellation e-mail we received included our specially-arranged emergency exception.) Luckily, Len did reach the dentist — and the secretary said we should keep on our path to arrive at the clinic, as they would still be able to see Charlie. She reiterated to my husband over the phone though that they could only do emergency procedures – by law – and were also limited in what they could address.
This is how the dentist visit went…
When we got there, the dentist said he could not use any drills (because of saliva splatter / droplets created)! He explained that he was mostly limited to doing extractions – because of the new mandates in place as a result of #CoViD-19. I told him that I hoped he could help Charlie – at least with the giant cavity in his front tooth because it had progressed so far (since we had needed to wait several months to get it taken care of, as I needed to earn the money to cover the out-of-pocket costs).
Luckily – without drills – he was able to scoop out the rotten material and do what he said might end up being a “temporary” filling on the most damaged tooth. He said they will check the filling in a few months, when they anticipate being able to begin seeing patients again (I made follow up appointments for AJ and Charlie for June 15th!) and he said that they may need to re-do the filling at that time. He said there’s is actually a chance the filling could simply fall off of Charlie’s tooth given the location, combined with their restrictions on using drills to appropriately shape and properly prep the tooth for a filling.
And then the dentist offered me a *magic* solution for Charlie’s other teeth:
And then the dentist offered me a very bizarre solution for temporarily treating the other cavities (cavities he said he could not treat appropriately at this time because they were not emergencies allowable for treatment under the current mandated restrictions on dentists.) And THIS is the main reason I am writing this post — as I had no idea this solution even existed, and I wanted to make sure each of you knows about it – just in case your dentist also needs to put off work on your kiddos between now and June 15th (when the dental work restriction is currently scheduled to be lifted – in the State of Oregon at least.)
The dentist offered to paint a Silver-based solution (apparently it’s called SDF– has been approved in Japan for more than 80 years but has only had FDA approval in the United States since 2014!) on Charlie’s other existing cavities. He explained that they don’t normally offer this, as it turns the teeth BLACK — specifically in the area of the decay (see black/brown spots on the picture Charlie’s teeth below)! He also explained to me that the solution temporarily seals the cavity, killing the decay on that spot and preventing any further decay. He asked if I wanted to do that — since, otherwise, he could not treat them until “at least June 15th” (if the order stays in place). … I was like “f- yeah!”, of course I want you to do that! And why haven’t I heard of this magical Silver-based solution that halts dental decay before? I’ve been a parent for almost 24 years and have never heard of this!
Apparently, most patients don’t want to do this for their children because of the cosmetic implications of having your teeth blackened — but I was like, “hey – it appears we’re going to be isolated for months – and then eventually you will be doing a filling there (thus removing and covering up the black spots) – so why WOULDN’T we want to do that? And this is why Charlie now has black spots on his teeth today (image below shows the spots)!
Continue reading below the image:
Perhaps not the most interesting anecdote – but I am planning on writing a piece here on how the #ZombieApocalypse has impacted the lives of each of my boys – and this is the most significant (medical) impact on Charlie (so far!)
Other impacts on Charlie are mostly positive…
- He is thrilled that his brothers are home most of the time.
- He’s not really missing school. Prior to the Zombie Apocalypse he only went to school 2 or 3 hours each day anyway (usually 3 or 4 days a week)— so “missing school” is not an unusual thing for him.
- He is thrilled that he gets to spend more time with his family.
- He is thrilled that he gets to sleep late – guilt free! This is something he really needs to do each day anyway – something we’ve already discussed with his doctor and his teachers. Given his severe ADHD (combined with his rapid physical growth and need for extra sleep) he’s just not a good candidate for a “normal” elementary school schedule.
- He is thrilled to be able to watch more movies, draw more, do special projects with the family – and play Minecraft.
- In the past week as a family we have: gone to the beach (a secluded stretch of beach – to avoid any potential exposure to others); gone for hikes in the forest (again, selecting areas where we know we aren’t likely to encounter others); visited waterfalls; collected and painted rocks; made candles; and the kids did some blacksmithing (iron work) on their home-made forge [which A.J. designed and built last year!] — it’s like summer camp!
Day 1 of the #ZombieApocalypse: 22 days ago!
His last day at school was actually quite some time ago. Given Charlie is medically fragile – and specifically given his disability cluster includes a history of compromised lungs / reactive airway disease [with – between 2008 and 2015 – six years in a row of annual winter hospital visits with watchful nights with steroids, hospital-grade-nebulizers and monitoring equipment in emergency rooms], we couldn’t afford to send him to school under these circumstances (even before the full scope of concerns regarding #CoViD-19 was known, and before updated recommendations had been issued).
Out of an abundance of caution, the last day he went to school was 22 days ago already. On Monday, March 2, 2020 he went in to school for the full day for a special event [which included Charlie having the opportunity to make cotton candy for the class & staff and reading books in pajamas in the hallways with the entire student body!]
It looks like (at least for Charlie) that was the end of 5th grade.
March 2, 2020 was also likely Charlie’s last day of “normal” school ever – for what will now be his graduating “class of one” in 2027. Absent revolutionary change in the Portland Public School (PPS) system’s Special Education (SPED) Programs we did not expect Charlie to be able to attend public school past 5th grade because of the severe shortcomings and limitations of these programs! So… I expected this was going to be my eventual new normal anyway (full time with Charlie and Avi at home, finding alternative eduction options for each of them), it just arrived a few months early.