One other thing I would ask about for scopes and that is the possibility of placing the pill cam or dummy pill cam while he is under. I hear they are on the larger side and some kids have trouble swallowing them so why traumatize him if you don't have to....take advantage of the anesthesia.
This is a great idea! I don't know if it's a test you'd have to get special authorization for. Our insurance did not want to pay for it since M had already been diagnosed and it took a lot of appealing to get it covered (it was a giant pain, but doable). So I would check about that and email his GI and see if it's possible.
It is more helpful for them to put it in duodenum, just in case he has just motility issue. M's pillcam sat in her stomach for 4 hours so we really did not get enough images of her small bowel :ybatty:. But actually, that was the first sign that she had a motility disorder, so the test wasn't useless.
If you aren't able to get a pillcam placed during scopes but can have it done later, that's not the end of the world. It's not too big - has he been able to swallow something like Pentasa? It's a little bigger than that, if I am remembering correctly. My daughter had no issues at all but she takes 6 pills at the same time every morning, so she had practice
.
I also am worried about him falling behind BUT he is young enough that it may not be a big deal. Can his teachers send work home for him? Just to do 1-2 hours a day, as pdx suggested? We had work sent home for my daughter when she was on homebound because she only got a few hours a week with a teacher from our school district.
She didn't really actually need much help, except for math. She was in accelerated biology at the time and she was able to teach herself by using the textbook and going to online videos. I helped her with the reading and writing kind of classes.
So that's a long way of saying that I wouldn't worry about what your son is using to pass the time right now. Hope that the scopes give you answers so that he can start feeling better soon!
pdx is absolutely right about flares. I'm not going to lie - my daughter has had MANY flares over the years and without TV and the internet, I'm not she would have made it through them!!
I mean, I suppose she would have had to but distraction REALLY helps her with pain. Normally, kids with IBD/Juvenile Idiopathic Arthritis (JIA) or any other painful condition are distracted by school. But when they're too sick to go to school, we have to keep them distracted somehow or all they will do is focus on the fact that their belly hurts or they're nauseous or they've already had 12 BMs and STILL have to go again.
So that is where tv comes in for us. M uses it a LOT to distract her from pain. And her laptop - she actually watches most of her stuff on her laptop and is always on there talking to one of her friends on social media sites or even just via iMessage.
When she has a flare or a surgery, all rules go out the window. Now she is 21 and an adult so it's not like I can limit her screen time. But when she was younger and I did limit it at home to a certain amount of time
except when she had a flare.
Now we try to go into surgeries with a tv show to binge watch
!! M tries to find something new on Netflix or Hulu (a TV series or a movie) before the surgery and saves it for the recovery period. Sometimes we go into surgeries with TWO shows to binge watch. She had major surgery over the summer - 8 days in the hospital, including 2 days in the PICU. That was when the World Cup was going on and she was a big soccer fan and two hours after surgery, she was watching a world cup match!!
But besides the many matches (we watched them all), you know what else she did? She watched Frozen, Coco, Moana, Finding Dory and Up which the hospital had on the TVs in every room (it was at Boston Children's).
AND then she watched some of Staircase and re-watched episodes of Broadchurch - both are murder mysteries (and one is a true story!).
Anyway, my point is just that she spent much of her time on her laptop, trying to distract herself from pain. She watched a lot of TV shows on her laptop, but she also reads the news a lot - she knows a lot more about current events than I do and I watch the news every night. She also likes staying up to date on the AS research - it makes her less anxious about the future. She really reads a LOT of studies on AS/JIA and IBD, and it has also made her want to work in medical research, particularly in immunology and how these diseases work.
So at least some of her excessive laptop use has been educational :lol:l!!
Keep us posted - hope those results come back soon.
