Oh? I didnt know they use ultrasound to detect inflammation in the joints. That is cool.I think @my little penguin ’s son has had an intestinal ultrasound. I don’t know if it’s ever done during a regular checkup/exam (if that’s what you’re asking).
They do use ultrasounds to check joints for inflammation but most pediatric rheumatologists (in our experience) still have you schedule those separately instead of doing them during your visit. But rheumatology is moving towards doing them during the visit so perhaps GI will eventually do the same. Currently an intestinal ultrasound is a lot harder to do and interpret than a joint ultrasound…
Originally I had the appointment with Dr. Dubinsky but changed to Dr. Spencer because I was told that after we are established we can go remote whereas Dr. Dubinsky only sees patients in person. Also, Spencer sees patients twice a week (vs once a week for Dubinsky) so I thought that might work out better for us. I am very glad to hear that you had good care there! I am looking forward to learning more about my son's situation and the research they are working on for peds.We saw Dr. Dubinsky at Mt. Sinai and liked her. She was kind and she was very thorough and she considered M's arthritis as well as her Crohn's more than other GIs we've seen, which we really liked. She didn't use IUS during the visit but this was nearly 7 years ago!
Is that whom you're seeing? The plus with her is that she's pediatric but also trained in adult GI, so she sees both kids and adults and you don't have to transition to an adult GI, which can be hard on kids. We ended up not switching to her because M needed a feeding tube placed surgically and at the time, there was no one at Mt. Sinai who could do that. She also did not treat Gastroparesis at all and so referred M to a motility GI and M did not want to see two GIs, so we went back to our old GI.
How is your son doing @asadmom? How's he feeling?
All great points! Our meals are not calorie dense due to CD. Junk and snacks are cut way down. I also agree that my son's portion size is so much smaller now compared with over a year ago before he got sick.I would definitely try tracking calories because I was shocked when we went to the dietician and I learned my daughter was getting an average of 700 calories a day. I thought she had been getting 1000-1200.
Also, over time we sort of forgot what normal sized meals were. M used to eat very small meals and that became normal - normal for her, and I would think she was eating more than she was. It sounds ridiculous, but when you see something every day for a long time, you just get used to it, even if you’re worrying about it. And also, her stomach got used to it! Our GI told M that the stomach is a muscle so if you have to stretch it if you’ve gotten used to very small meals. She was put on tube feeds for 85% of her calories and she was encouraged to eat. Over time, the amount she ate went up, and the amount she got through the tube went down.
Even supplemental EN can really help with growth and weight gain and it can only help - there are no downsides at all (well apart from bribing your teenager - my husband suggested a kitten when I was thinking shopping spree. Guess what she chose!)
That made me laugh. When my daughter was first diagnosed with juvenile idiopathic arthritis, she was so shy that she refused to tell the doctor what hurt!! The doc quickly learned to look at her face while examining her joints and over time, M got to be an excellent advocate for herself.A typical visit for my son - answers each question with a grunt. Lies down on his side with his back turned to the doctor. He did the usual routine today and the doc goes "you are not even listening to me anymore" His doctor really needs to have a thick skin to take on the role. I don't know if I can make him go to see one more doctor. I think for now I just pray for his physical well-being and he does a very good job monitoring his diet and lifestyle. I'll have to observe him a bit more as he is going thru a young teen phase.
Thank you so very much for helping me understand the ramifications of all the options! This is absolutely difficult and the doctor took his frustrations of the needles into consideration as well and believed (even without the side effects) his mental well-being warrants the med switch. I'll discuss all the options again with the doctor after digesting everything.Stelara just works slowly. Our GI said 6 months and even longer for Entyvio. Kids get put on steroids or do EEN generally while waiting for maintenance meds to kick in. Steroids, as I'm sure you know, come with a lot of side effects and increase the risk of infection. EEN can be very hard on teens. It can certainly be done, but if your son is already refusing to drink more than one shake, then it'll be hard though an NG tube may make it easier (somewhat - he still wouldn't be able to eat more than roughly 10% of his calories, if his doctor allows him to eat).
Also remember that there are really only 4 drugs for kids with Crohn's - Humira, Remicade, Entyvio and Stelara. There are others that are being used on adults - like Xeljanz for UC, Rinvoq which is approved for UC and doing well in trials for Crohn's and Skyrizi. But I haven't heard of any kids or teens being put on them yet (unless they're over 18). Also remember that typically a biologic works best the first time you use it. You can re-try biologics, but in our experience, they really do not work as well the second time (or third!). My younger daughter has very severe arthritis and so has been on pretty much every drug approved for her type of arthritis. We have had to re-try biologics to buy time until a new drug is approved. Humira worked really well for her the first time. The second time, it worked for 3 months and then she majorly flared. Same with Remicade - she has been on that multiple times and it worked really well only one time.
Also, conditions that are "unmasked" by a drug may not go away even when you change that drug, like @my little penguin said above. I know we've had several members whose kids have gotten psoriasis while on Remicade, but even when they switched from Remicade (not because of the psoriasis but instead because it lost efficacy), the psoriasis did not go away. I'm specifically thinking of @crohnsinct 's daughter who got severe psoriasis while on Remicade, but stayed on Remicade because it was controlling her Crohn's well for quite a while. When she switched to Entyvio, the psoriasis did not go away.
The absolute worst thing is to run out of drug options. My younger daughter has really struggled with that, partially because her arthritis is so severe that we had to switch drugs but also because she once saw a bad rheumatologist who switched her meds very quickly. Once you're out of options, you're really stuck. You can re-try drugs as she is now, but she is really suffering - she likely has antibodies to both biologics she's on.
Interestingly, she just started having skin peeling on her palms. We haven't shown it to a derm yet but we certainly will not be switching Remicade to another anti-TNF just because of that. She's partially responding and I think that's the best we can hope for.
If your son is struggling with biweekly shots, I strongly recommend a psychologist, especially if he's also struggling with medical procedures. Dealing with a chronic illness is HARD and psychologists can help a lot. He is always going to need medical procedures and he will also likely need injections or infusions for quite a while (until more oral drugs are found - the two current oral drugs are much less safe than anti-TNFs). So he does have to learn how to cope with them.
The point I was trying to make is that unless it is a severe side effect, you're much better off sticking with the biologic because there simply aren't infinite options - in fact, there are actually very few options. I also wouldn't call the odds you mentioned vanishingly small but perhaps I have just watched my daughter suffer a lot as she's had to re-try biologics.Stelara is just as effective as Humira at keeping Crohn's inflammation down, and it has the benefit of being substantially safer. If you're already dealing with a bad side effect from the Humira, I don't see why you wouldn't want to try Stelara instead. Most people are able to restart Humira if that becomes necessary, and the odds of the worst case scenario (1. Humira is working against inflammation, 2. Humira would have kept working, 3. Stelara doesn't work, 4. No other alternatives work, and, 5. Restarting Humira doesn't work) are vanishingly small and should not prevent a switch.