Sorry if this has been mentioned I’m new too all this forum stuff! Anyways, my son has been diagnosed for just over a year now he started the omni pod around 6 months into him officially being a type 1 superhero everything was working fine in fact great tbh but now we are really struggling I know his a growing boy and this is quite normal but this past week end his gone as high as 30 & has dropped into his first ever hypo which was terrifying… I’ve been told it’s all going to change because his honeymoon period has finished & his practitioner keeps coming and changing settings but then after a few days it all goes crazy again and I just want to get the hang of what’s causing this or if another is pump may be suitable for him? I’m still fairly new & don’t feel I’ve been informed enough about everything I kinda feel like I walked out of the hospital with just the simple basics and was told if you need anything call us.
It doesn’t really sound like a problem with his pump but just what starts to happen when you come out of the honeymoon stage. Does he have a CGM? That will enable you to be proactive with his BG control instead of only catching it when he is in dangerous territory. With a pump you can set temporary basal rates so that if he is running high that day you can give him extra insulin for a few hours and if he is dropping too fast then you can reduce his basal rate and hopefully prevent the low.
Wow, sorry you did not get more support. Where do you live?
I was diagnosed at age 5, but over 50 years ago!!!
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I also recommend to check into CGMS, or Libre for better visibility to 24 hour BG trends.
Honestly, like everyone says, if you don’t have a CGM really consider getting one. CGM stands for Constant Glucose Monitor. It makes it so much easier to be able to see his numbers 24/7. If you get a Libre, you will have to get a separate side ap for alarms if you want them, A Dexcom which already has the alarms is nicer. That way you set warnings up for when he goes low or high.
It really doesn’t sound like the pump to me either. I have an Omnipod and I’m thrilled with it, A pump makes it easier to make adjustments in insulin doses when needed and most pumps work about the same. There are a few different types out there, I think some of them depend on where you live.
Welcome to TUD @Court28, we’re really glad you found your way here. There are a lot of experienced T1s and parents of T1s here who are eager and able to help out.
That’s not an unusual way to feel, alas. The gap between what the dr’s can tell you and what you run into in reality can be pretty great, and we ALL deal with that. It’s one of the reasons sites like this can be useful because we have the first hand experience and can fill in some of those gaps. It’s easy to get the impression, early on, that there is a Single Right Way To Do This, and if you’re not getting perfect results you must be screwing it up. But that is not the case. It’s a tricky balancing act, and everyone’s body is unique, so the guidelines help you get started but you also have to do your own observation, and talking with other patients and caregivers can be a major help.
- When you say you don’t feel informed enough, can you tell us a bit more about what your state of knowledge actually is? Can we assume you’re familiar with Insulin:carb ratios, correction ratios, and that you’re carb counting for meal boluses?
- Hypos are the scariest and most immediate issue. They can be caused by a lot of things, including exercise with insulin on board, mis-judging carbs (or not eating all of the ones you bolused for), and also things like endogenous insulin unhelpfully kicking in while you’re still in honeymoon. Additionally, there’s one cause that’s easy to fall into, especially early on, which is giving too large a correction bolus for a high, because highs can set off emotional triggers, particularly—but not only*— for parental caregivers (OMG how’d I let this happen? Bad diabetes parent! BAD!!!). Have you observed any patterns in when he’s likely to go low?
- Like everyone else says, all of these things are easier to get a handle on with a CGM. One nice thing about the newest Dexcom is that the transmitter is low profile, and the inserter device ameliorates the insertion process—there’s no visible needle and it’s pretty painless even compared to giving an injection. Big consideration when you’re dealing with a little kid who probably feels like a pincushion already.
- “Type 1 superhero” <— LOVE THIS!
*For non-parental examples of this phenomenon, try searching the forum for posts on “rage bolus.”
Always have backup short term and long term insulin in the fridge for when the pump fails. It will eventually. You will need to have syringes on hand to give insulin when you are not certain if the pump is functioning.
He must be on a Dexcom, if he is going to use a pump. Otherwise, this is a very unsafe set of circumstances. Neither we, nor you, nor the Docs can troubleshoot what is going on without that data.
Hello @Firenza thanks for your reply. He does have a Libra but he tends to pull it off as he says he doesn’t like it. I’ll ask for a new prescription and start him back on this as that seems like the answer as a lot of people have said.
Hello @DrBB I know all the basics like ratios etc everything you’ve mentioned I think it’s just the whole omni pod settings etc that I’m not clear on.
I’m going to try and get him to keep his CGM on.
Since writing this post he has been great we haven’t had a high or low reading I’m thinking he was maybe under the weather.
Thank you everyone for your replies it’s nice to know I’m not alone.
I’m not sure this will help, but there is a site called Grif Grips. It’s an adhesive patch to help keep pump, and CGM’s on. They are pretty cheap too.
But what might really help about this is they come in all sorts of cute shapes for kids, from bats, to cats, flowers to footballs etc. If he has a fun patch around the Libre maybe it will help him want to keep it on?