I cannot believe it has been almost a year since I last posted something. I would love to say that everything is great, and that we took time off to enjoy life but, sadly, we have had a lot going on over the past year.
A little over a year ago, we helped move my parents to a condo near us. With their advancing age, they began to need services that required long drives to bigger cities, and this was becoming difficult for them. We wanted to help, so we suggested that they consider moving nearer to us. While their health is not terrible, they do have challenges. My dad has diabetes and some severe mental health issues. My mom is a strong fighter but has struggled since a battle with breast cancer several years ago. They are doing well now, in their condo in a senior community that is only minutes from us. Mom has been a big help for us because she loves being “Nana,” and is generally available to help with the kids when I have needed a break or had a doctor’s appointment.
Other than that big change, things were pretty good for us and the kids. Surprisingly, everything seemed to even out for a while… and then E became a teen. I had read many times over that puberty mixed with autism is a whole new game– that it can feel like you’re starting from scratch, trying to figure your child out. Despite knowing that this was a possibility, I was woefully unprepared for what to expect.
Like most milestones in his life, E started puberty earlier than most, with the first signs of it starting around age 9. By the time he turned 13, this winter, he was a hot mess of boy adolescence. We have attitude, smells, and shaving. He no longer enjoys showers, and it is a fight to get him to bathe. We also have constant anger coupled to a hair trigger. I swear, I can no longer talk to my sweet boy without pissing him off somehow; I feel that he has been captured and locked away for the next several years, replaced with an unknown entity. The hardest part of all this is not the regression, the talking back, or the smells, but seeing this kid not understand “what he did wrong” or “why everyone seems mad at him.” He has always keenly sensed that he is different and, unfortunately, with autism’s social disadvantages, he struggles to see the issues, even if they are pointed out to him. He is extremely domineering to the dogs and his brother, leading to constant fights and hurt feelings.
Now we circle around to C. This poor child; I can’t even figure out what to begin with. He has been professionally diagnosed with ADHD, ASD, ODD, EFD, SPD, 2E, Functional Constipation, Encopresis, Binocular Convergence Insufficiency, and poor Gut Health, all of which I have mentioned before at some point. We are fairly certain he also deals with Auditory Processing Disorder or a slow processing delay, but doctors have not confirmed those.
The more urgent of his issues, however, is his gut health. Last year, I wrote about how we had connected with a great new GI doctor and things felt so positive. C had a small procedure called an Anorectal Manometry. This procedure would tell us if his rectal muscles were functioning properly, and to rule out a condition called Hirschsprung’s Disease. The results of the test showed that the rectal muscles are working properly. However, nothing was said about Hirschsprung’s. C previously also had an MRI on his lower spine to rule out Spina Bifida, which was negative.
So, at this point, our wonderful new doctor was stumped. Due to the fact that he was still creating a Motility Program for his hospital, he decided to send us to Seattle Children’s where they have an entire department with doctors very well versed in issues like this. So, we again go through the process to see a new doctor.
Our first appointment at Seattle Children’s is arranged, and they want to do another anorectal manometry because they have access to a more informative test. Again, the test seems to be inconclusive for Hirschsprung’s. Moving forward, the doctor then orders a Sitz Marker Test which should tell us how long things take to enter and exit the colon. All this test requires is for C to swallow a capsule full of tiny radio-opaque markers and, in a week, get an x-ray to see where the markers are. Theoretically, they should have passed out of his system. However, the x-ray showed that all 25 markers were still in his colon. Counterintuitively, this is a positive result: it shows that he isn’t eliminating at the rate he should.
I could have gone all snarky with this poor doctor, but I didn’t. I mean duh, he only has a BM every other week or so, even while taking medications to help. Obviously, he wasn’t going to eliminate the markers. The next test was a contrast enema. It’s about as fun as it sounds. C gets filled up with saline and barium, and then has a series of scans. This was actually fascinating for to watch. Shockingly, he was able to hold 3+ liters of fluid. After they were done, he was supposed to eliminate the contents, and everyone was shocked that he didn’t need to use a bathroom immediately. In fact, I think it was another day or two before he actually went. This test showed us he had a large, stretched out colon, with a comorbid redundant colon (extra loop or bend).
The next test was to be a colonic manometry which is just like the rectal manometry but measures the muscle functionality of the entire colon. The test was scheduled for early March but, the week before the appointment, the hospital called to postpone the procedure due to insurance refusal. So, the hospital pushed the procedure out a few weeks to allow them to negotiate with the insurance company. Unfortunately, that date was also cancelled, this time due to the COVID-19 lockdown. This actually worked out in our favor, because my mother got really sick with pneumonia, and I was able to help with her care, also giving me time to attempt to convince the insurance provider that we actually needed this procedure.
We are now up to May and, in the mail comes the final decision on our insurance appeal. The answer was still no. They highlighted that the requested procedure is investigative in nature and that they don’t cover investigative procedures. So, our doctor has decided that they can get by without the procedure because of how expensive it would be. Amazing!
So, this moves us into the next phase of our effort to help C. He is now on the wait list to have a cecostomy. This surgery will mean that finally, at age 10, C can have daily, regularly scheduled, successful bathroom visits, and never have to wear pull-ups again; allowing him to be a physically normal kid. Yet again, there appears to be a light at the end of the tunnel. Time will tell.