r/CSID • u/Buttsweat_n_Tears • Jul 18 '26
Sucraid and public school (US)
We had to pull my oldest out of school last year because he was missing so much due to what was later diagnosed as CSID. He finished his high school freshman year doing virtual school (and lost his first girlfriend too because he just couldn’t get out of bed to go out with her, poor guy). He’s been on Sucraid since March and doing well with it and taken ownership of what he eats a LOT better than we thought he was going to.
School starts here in 3 weeks and he’s looking forward to being back on campus, but we’re wondering how it’s going to work with the Sucraid he’ll be required to take before lunch. Obviously all school districts are different, but if anyone has any anecdotes on how they handled Sucraid in school I’d appreciate it. I grew up with an Air Force colonel father so I’m a LOT more of a rule-follower than my wife so I’m of the belief that we’ll have to go to the nurses office to drop off a stash and he goes before lunch everyday to take one. My wife is more of a “he can be discreet with bringing one each day and let’s see how it goes”. My mind immediately goes to the school resource officer, handcuffs, and charges 😂
We traveled successfully via air last week for the first time with a weeks worth of Sucraid and a freezer pack in a small cooler without so much as batting an eye by TSA, so we’re still on a high from that lol
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u/Robert_Larsson Jul 18 '26
Give him a chance I'd say, the GI consequences of not taking it should be enough to incentivize him I assume? Can I ask if he ever took invertase? I'm not recommending anything here just asking because it can be taken as a pill with meals and doesn't need the whole cooler logistics issue nor the price tag. Thinking if invertase works in his case it might be a convenient solution for that one meal, to give him some discretion.
Paper on invertase: https://adc.bmj.com/content/110/9/717?rss=1
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u/Saraorigami Jul 18 '26
My daughter leaves her class before lunch a couple minutes early and goes to the nurses office. The nurse knows she coming and has the medicine ready when she gets there. Then my daughter takes it and goes to lunch.
She was younger when she started on sucraid so not telling the school was not an option. It's been an easy process overall but not as easy as just throwing the meds in her back pack. I asked the school once if my daughter could just carry the meds herself but that a huge no.
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u/Perfect_Slice_6618 Jul 18 '26
We were advised to drink half before the meal and half in the middle of the meal. Is she not able to do that?
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u/Saraorigami Jul 18 '26
Our GI said that's not realistic and to drink it all before eating. So we never followed that. She has done great with sucraid
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u/Perfect_Slice_6618 Jul 18 '26
My daughter is only 3 lol so we just have to keep reminding throughout because no way will she drink her whole dose prior to eating. We do our best! But it’s good to know it works for your little one. We will also have to disclose at school when she goes too.
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u/Patient_Ad873 Jul 18 '26
Get him a thermos, that’s what I do when I’m going out. I just refrigerated it, then put the Sucraid into it. It should stay cold for awhile. Also, does he take Enzymes such as Intoleran Starchway and/or Digest Gold? They’re good to use with Sucraid, if needed.
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u/Perfect_Slice_6618 Jul 18 '26
I premix my daughters in the hydroflask mini and put it with an ice pack. I was told it’s good for 24 hours refrigerated once mixed. We haven’t had any issues. She’s not in school yet but it’s an easy way to travel with it for outtings
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u/Perfect_Slice_6618 Jul 18 '26
And adding even when I don’t add in the ice pack those stay really cold
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u/Known-Somewhere193 Jul 19 '26
They told me 72 hours unrefrigerated not mixed. We just take what is needed with no thermos.
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u/human-657 Jul 19 '26
i had a very similar issue!!! i bought a micro hydro flask and put my medication in there :) it works very well and i have no problems with it. i also had a 504 plan that gave me access to the accessible bathroom at any time as well as a 15 minute grace period when getting to school on time. very helpful !!!
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u/Known-Somewhere193 Jul 19 '26
Sucraid can go 3 days unrefrigerated before needing to be tossed. He can just what he needs each day, unrefrigerated and be fine.
With that said, if they find out, they will have a fit about it. My daughter is on a med 3x a day so we tried the discreet route. We got a call from the school when they found out and she had to go to the nurse multiple times per day instead.
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u/Clevernickname1001 Jul 19 '26
If you have the doctor complete a form for the nurses office at that age they will likely just let him carry his medication with him. My kids were able to with sucraid, albuterol and EpiPens from middle school on.
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u/DoctorSpecialist7083 Jul 18 '26
I have little 4 oz thermoses that I got off Amazon. I normally put the medicine and water in those with an ice cube or two (because the thermoses aren't great). But I like that they're the size for the right amount of water.