Diabetes and Aspergers

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theneils

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Hi all

Does anyone have a teenager with both type 1 and aspergers? My son's glucose levels are really high (12-22) for the past few days. He uses a dexcom G6 and an omnipod dash pump (diagnosed in May when admitted to hospital with DKA). Since coming home from hospital, we have been having more hypos than hypers - as in 4-6 per day. Then it evened out for a week and now he is always high. I feel his pump settings need to be changed, but (this is where the aspergers comes in) he refuses to change anything unless someone from the hospital tells him to make the changes. I emailed the hospital, but had no reply, so I phoned but noone was available to speak to me. They said if he is unwell to take him to A&E - he isn't unwell other than a headache and I don't want to sit for hours in A&E when I know it just needs his PDM changing. Also, we fly to Greece on Tuesday so this is all a last minute stress!

Sorry for the ramble, but if anyone has any tips on easing him into making changes on his PDM without the hospital, I would love to hear them!

Thanks
G x
 
I don’t have a child with aspergers but I do have autism myself.

I’d suggest using the settings already in the PDM but checking BG more often - I’m assuming that if you put a high bg in between meals it will deliver a correction? Then no settings are changing.

Then also set up an appointment with his team to discuss the immediate bg issue, and get them to tell him what changes to try, but then set up another appointment too to discuss learning to adjust his settings himself.

If his team can give you both clear instructions of how and when to change the settings, then they’d be telling him that he is okay to change the settings. I’d suggest you clarify the plan at the end of that appt so it’s very clear to him “so if Jonny had lots of high bgs he doesn’t need to wait for an appointment he could try changing this setting, and if it didn’t work we’d give you a call” or whatever the plan is, just to make sure it’s reiterated and they have confirmed it.
 
My daughter is 17, has had diabetes for 11 years and was also diagnosed with autism spectrum disorder when she was 15 (we think probably Asperger’s but they don’t call it any more). Unfortunately I can’t really offer any brilliant suggestions, my daughter will quite happily make any changes I suggest, probably because I did everything for her when she was little and she just got used to me being in charge. Her autism tends to show in different ways (finds people, going outside, bright lights, smells etc difficult). I just wanted to say that I sympathise and think that @Lucyr’s advice sounds really good. Hope you can sort something.
 
theneils said:
Hi all

Does anyone have a teenager with both type 1 and aspergers? My son's glucose levels are really high (12-22) for the past few days. He uses a dexcom G6 and an omnipod dash pump (diagnosed in May when admitted to hospital with DKA). Since coming home from hospital, we have been having more hypos than hypers - as in 4-6 per day. Then it evened out for a week and now he is always high. I feel his pump settings need to be changed, but (this is where the aspergers comes in) he refuses to change anything unless someone from the hospital tells him to make the changes. I emailed the hospital, but had no reply, so I phoned but noone was available to speak to me. They said if he is unwell to take him to A&E - he isn't unwell other than a headache and I don't want to sit for hours in A&E when I know it just needs his PDM changing. Also, we fly to Greece on Tuesday so this is all a last minute stress!

Sorry for the ramble, but if anyone has any tips on easing him into making changes on his PDM without the hospital, I would love to hear them!

Thanks
G x
Click to expand...
Any chance of you changing the settings whilst he is asleep?
 
Lucyr said:
Really wouldn’t recommend that, you’ll just lose his trust.
Click to expand...
That's ok, it was just a suggestion due to wondering if the lad would know or notice the change.
 
If you are relatively new to diabetes (only diagnosed in May) and using a pump, I would be inclined to keep pushing the diabetes clinic for support. Is your son still under a pediatric team or is he an adult? Do you feel confident enough to make changes to the pump settings yourself?
That said, sending you home from hospital with settings which were causing 4-6 hypos A DAY is rather shocking, so I am not sure I would have much faith in his team. Dosing with insulin should always be started off conservatively. Have you checked that there is no leakage happening with his pump so that the settings are right but the insulin is "tunneling" up the outside of the cannula to the skin surface instead of being absorbed. I have read of other people experiencing this, I believe particularly with Omnipod. It might be worth changing the pod if you haven't already, to see if that helps. Just thinking if this is the issue you could change his settings and the next pod end up delivering too much and have a bad hypo. I am guessing you would be looking for the surface of the skin around the pod being a bit damp after a bolus. Could you revert to injections for the holiday if you can't get the situation ironed out before you leave. I can imagine it must be a huge stress trying to deal with this issue in such a short time scale.

Presumably you are testing for ketones with his levels being so high?

Something else to consider but is your travel insurance aware of his diagnosis. I am just thinking you likely booked before he went into hospital with DKA, so you may have not considered this scenario, but with his levels being a bit unstable, that increases the likelihood of him needing medical support whilst away and I would hate for you to be caught out with hefty medical expenses. Apologies if that causes you even more stress, but just occurred to me whilst I was typing.

Good luck and I hope you get it resolved and have a wonder time.
 
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