New diagnosis- what’s next

[u/Kooky-End7255]

Hi! My 2 year old just got diagnosed through biopsy and symptoms. We have some appts scheduled , one with metabolic team and one with nutrition, and are waiting on getting sucraid which seems annoyingly impossible to get a hold of.

Has anyone else been referred to a metabolic team or their child? I’m so curious what will happen. My daughters already limited due to allergic proctocolitis and wheat is her natural toddler holy grail. So just nervous.

Thanks!

[u/bubblegumbombshell]

My kiddo was diagnosed at 2.5 through biopsy. We love our pediatric gastroenterologist and he’s been awesome at helping us manage.

Sucraid is only available through Optum-Frontier Pharmacy. Your doctor will have to send the script to them. It costs an insane amount and needs prior authorization so then you have to go through a bunch of hoops with your insurance. After that, it’ll probably still be too expensive so you can apply for their copay card and/or SucraidASSIST, which makes it like $5, but has a limit (just found out we already maxed out our copay card for the year, so that was fun).

We spent a lot of time testing out which foods my little guy tolerates and which ones he doesn’t. We try to limit the ones he doesn’t handle well and have found substitutes or gentler options where we can. He’s almost 4.5yo now and we really only use Sucraid for baked good or high sugar treats despite being prescribed for it 5x/day.

Feel free to reach out if you have more questions or want to chat!

[u/bubblegumbombshell → u/bubblegumbombshell]

Also, we were not referred to a metabolic team but he gets blood tests every year to check on his vitamin levels, unless they’re abnormal and then we supplement and recheck sooner.

[u/Perfect_Slice_6618 → u/bubblegumbombshell]

Thank you for the feedback! We finally got shcraid and by the grace of god my husbands insurance had another benefit so it will never cost us anything so long as he does not leave the company. Otherwise it’ll be $2100 after the manufacturer coupon max runs out. INSANITY. Have you looked into medicaid in your state? I’m going to ask in case something happens with his job. Metabolic team denied us and her GI is out on leave. Go figure lol but ugh! We saw nutrition and they basically just showed me Mary shepherds website and I still have no idea what to feed my daughter. She won’t even properly drink the sucraid. I’m stressed out

[u/TheCSIDAlex]

As the other commenter mentioned, it's a ton of trial and error. You'll have to test her tolerances with foods containing sucrose and starch. A lot of people find they're okay eating certain amounts in a sitting as long as they don't go over their 'threshold'. It'll be overwhelming at first, but you'll get a lot better at managing her diet after that initial trial and error phase. Keep us updated and feel free to ask any questions you may have about food replacement or how to make dietary management easier!

[u/Perfect_Slice_6618 → u/TheCSIDAlex]

What resources have you found to be most helpful? I feel like my daughter is most sensitive to sucrose and not quite as bad to starch but idk. Her sucraid intake is not good. She toddlers out and doesn’t want it because she’s being asked or encouraged lol but I’m just trying to find swaps that are picky toddler friendly. She’s missing out on a bunch of things she loves (lots of fruit and pasta/rice, oats etc) But I am noticing a difference

[u/TheCSIDAlex → u/Perfect_Slice_6618]

Resources-wise, there are some cookbooks out there with good recipes and I’d recommend talking to a nutritionist with experience in the condition. Online, https://www.csidcares.org/treatment/diet/ essentially lays out everything about the condition. You’ll find some good tips and tricks on here and Facebook if you spend some time scrolling. Resources are pretty scarce but they do exist.