Those that have little ones in school, how often does your child get insulin from the school nurse.? My daughter who is 6 and is not on the pump will only be able to get 1 shot a day from the school nurse for Lunch and a correction at Noon. She is getting her insulin after she eats because she tends to not finish her lunch. They have asked that she bring a carb free snack in the Am and PM so no shot is needed. They also will not let me make changes to her ratios and corrections without writing from her endo. Just checking to see if this is normal for school? We manage it so different at home. It’s a huge adjustment.
It’s hard to compare our programs since we are on the Pump and, even more, the Loop system. Liam (5yo) gets insulin all day via the Omniloop (basal auto-adjusts based on Liam’s BG’s, carbs, insulin already on board, trajectory of BG’s, etc.,).
In addition to the loop regulating the basal insulin that Liam gets, he also gets bolused for snacks whenever he eats them. Are you all considering pump?
I would love the pump. It would make life easier, but my daughter is so scared of it. Scared of change
I dont want to force it on her. I know one day she will be ready for it.
I don’t think it is good enough. I would insist on a correction at 250 (or whatever rounds off 0.5u for you) with a little buffer. I suppose the CR won’t change but maybe your daughter can compensate with a small amount of extra or a bigger portion of extra carbs? I imagine that would be difficult. We do have no carb snacks like cheese and mini-cucumbers which Audrey seems to have been enjoying for ages at this point.
My daughter is 3 and uses Omnipod - we moved from Humalog&Lantus injections to omnipod. I can’t recommend omnipod highly enough. It is not perfect and takes management but she feels much better overall. Its discrete especially in the colder months but she doesn’t seem to mind. Audrey is an apprehensive child but got used to it very quickly. Time in range has gone from 50% to 75% which is an extra 6 hours per day in range.
I hope you can convince the school to do a bit more
The cgm and pump were the best to things that could have ever happened for Liam and for our family (short of a cure). I’d you can get her to test a system I think she would love it. The Omnipod is amazing.
That sounds amazing. She wears the dexcom but only will.let us put it on her arms. We try and convince her to put it other places, but she is too scared. I know sounds crazy that she would rather a bunch of shot a day, but she was diagnosed at 1 and that’s all shes ever known. She went into DKA at 1 years old. I wish when we were in the ICU we were Introduced to the pump from the start, but they say they dont want to overwhelm patient and parents with the pump so start on MDI.
We only use Liam’s arms also for the cgm. We rotate his side and top thighs for the pods. We started out MDI but switched when he was young (before he was old enough to disagree). So the pod is all he knows (diagnosed at 2)
Smart!! If I could get my daughter to use her thighs as well, I think we might be closer to getting the pump.
@Nreid77, this is unethical – do other children get to eat snacks with carbs? If so, then your child should too. I am so angry on behalf of you and your daughter.
I would not sign any 504 plan that requires this level of restrictiveness. What happens if she runs high and needs a correction?
We have a one-on-one nurse for Samson who is in kindergarten and 5.5. He stays in his classroom and texts with me throughout the day to check in about Samson’s care. It’s in our doctor’s orders that settings and insulin dosing are at our discretion as parents, so they basically have to go along with what we request be done. I initially got pushback from the district nurse contractor (the one in charge of dispatching all the nurses to the school) and I politely pointed out that it was in the medical management plan from my doctor that parents are in charge of dosing and settings, and she backed down.
I didn’t think a one-on-one nurse was fully necessary – a trained aide who wasn’t a nurse would probably have been fine too, given that the nurses don’t do site changes or sensor changes. But, it’s been miles better than the treatment we got in preschool so I am pretty happy.
Thank you for saying that! That is the way I feel too. I had a 1 hour talk with two.nurses the other day about giving her a correction in the morning 3 hours after I gave her insulin and covering snacks etc…They said they just dont do it that way. They make me.feel like they are the experts and I dont know what I am talking about. I also feel very judged by them.I love the dexcom, but our nurse follows it. They make comments about her blood sugar being high and how they need more updated plans from her doctor so it can be lower etc…I told them it’s because she is getting dosed after. She has a really high ratio as it is. Also the poor little kid spent her first week hysterically crying because she missed me, so I imagine that plays a role too.
Audrey only ever has Dexcom on her belly. We rotate omnipod through arms and legs. Maybe you could try omnipod on a Friday evening to Sunday evening? you can take it on and off as you want. you also do not need to activate it or insert the cannula. You can just stick it on gently and not use it. Audrey has been upset a few times and still gets annoyed with the adhesives but we get through it and its usually only couple of minutes.
In general if she is crying hysterically we give extra insulin - she definitely goes high in the hours after being upset.
She’s never been upset because she missed me at pre-school, she usually tells me I can go now when I get inside the door.
Good idea. I had no idea I could try a pod out without insulin for a few days.
If you contact Insulet, they can send you at least one demo pod!
I would definitely engage with the local omnipod rep, I don’t think you have anything to lose. I think they gave us 2 demo pods to just stick on. The reps we met were very understanding and Audrey liked them both. You might get lucky and have a really good rep that your daughter likes.
The mandatory requirements from the insulet career page are strict so the rep should be a helpful knowledgeable person
- Bachelor’s degree and a minimum of 2 years’ experience training and/or managing insulin pump patients
- Professional up-to-date credentials and/or certifications are mandatory: i.e. Certified Diabetes Educator (CDE), Registered Dietitian (RD), or Registered Nurse (RN)
No to mention there are really cute POD covers and stickers that you can put over the PODs to show your individuality. This is the most recent one that Liam wanted. Maybe you can google stickers and caps/covers for Omnipod and entice her that way.
Here’s a good starting place for the stickers
Can you email your endocrinologist and explain the problems and ask them to rewrite the DMMP. Once it’s rewritten to specify that, for instance, she MUST get insulin if she’s high 3 hours after her last injection, they really can’t NOT do it. If their system is to require only nurses do injections and that’s why they’re denying your child necessary insulin injections, that’s also been found to violate ADA. Basically, several big court cases have found that any trained personnel can administer insulin shots. So what that means when they say they “can’t” do it is that they don’t want to send their nurses around twice or three times more than they otherwise would. If they can’t do that they need to increase their nursing staffing. It makes me so angry that people try to do this!!!
Sorry just realized I must have posted twice.
Yes. I just wrote a email to her endo. I ask that she write a sentence in her 504 that’s says mom is able to make adjustments to ratios and corrections if needed to keep a safe blood sugar level and also that they must correct if she is high 3 hours after last insulin dose. The school is having a hard time understanding that type 1 is so much trial and error. I hate that I have to be so tough with the school, but they are acting like they are the experts, and I know nothing. I know it’s my child who has type 1, but it’s almost like I have it. I’ve been living the disease for 5 years.
don’t feel bad. They are not doing their job and they are very possibly violating the law. You are doing your absolute best to keep your child safe – you are doing an awesome job!!
In our DMMP, many things such as I:C, Basal Rates, etc., all say “Per Parent”…meaning, the parent dictates this. Also, for the I:C specifically, there is a clause that indicates Parents/guardians are authorized to basically do anything we deem necessary with I:C. This is because they wrote 1:5 all the way up to 1:60 (see below)
Many sections of our DMMP, the Endo wrote “Per Parent”…so WE (Liam’s parents) are, and stay, in full control of what goes.