My daughter technically hasn’t been diagnosed with type 1 As we are having our first endocrinology appointment tomorrow. She is 27 with low functioning autism and new diagnosis of just 7 weeks ago when she went into DKA and was in ICU for 8 days. Wondering how other parents of someone on the spectrum has dealt with the new diagnosis and unconventional treatments we may have to use
I also want to add how did you prepare for your first endocrinologist appointment
Hi Mindy! You made it! I have some of the same questions as you. I did a search for autism on the forum and came up with an old thread. I hope there are others who can give insight into this topic.
I don’t have children, nor do I have personal experience with autism, only experience with friends’ children or personal friends with it, none of which have T1D. I am, however, well versed in metabolic processes and am T1D.
Before getting a diagnosis, there isn’t a whole lot to be done. There are pages and pages that could be types about T1D, but if it’s T2, for instance, many of the same helpful advice can apply, but the difference is life and death (T1D NEED insulin to live, T2D rarely does, but still can be dangerous, usually long term from high BG)
If the diagnosis is simply an ‘official’ dx, and you are already aware of the present condition, I would recommend a dexcom CGM, utilizing the Share App to put your mind at ease. CGMs give you a peace of mind that cannot be found anywhere else, unless you have been T1D for Year(s), usually decades, before the technology was as developed at it has been in recent years. They’re waterproof, last for days (7 officially, but on average 1 month, if stretched, 1.5months to 2 months if desired), and alleviate the needs to worry about potential highs and lows.
A pump can be useful, and many are good, but with what little experience I have with autism, I would likely recommend a tubeless pump, of which there is only Omnipod at the moment (I also use this currently).Later in 2018 there is supposed to be one or two other tubeless pumps getting released (may have been 2019, ill find links somewhere if relevant later). Ultimately, these are not required, as technically they do the same thing a shot would, however there are slight medical benefits to not using long acting basal insulins and only using short term insulin (mostly pertaining to how they effect metabolic systems and the crystallization of the medicines in subcue tissues). If tubes are not an issue, then the difference between an Omnipod and any tube pump is only a matter of personal preference, as they all do the exact same thing. I personally have some ridiculous phobia of hanging a tube on something and ripping out my infusion set, whereas I have actually ripped off an omnipod accidentally once, and just kind of looked at it with a mental ‘ow’ before just grabbing another one. Perhaps a tube accident would not be as violent as imagined in my head, but as stated above, it is purely preference in that regard. Many people use tube pumps without this issue, so perhaps I just know im too clumsy for my own good.
You’re going to come across a lot of information and be overwhelmed with a lot of do this and do that, so ultimately what I would suggest is to take it day by day, and remember that if T1D is diagnosed, at the end of the day, what matters is avoiding lows first, then avoiding highs after. If you’re doing that, you’re already doing it 99% right. If you aren’t, there’s probably something easily that can be changed, and many people here would be willing to help, along with your health care team.
The one thing I would suggest specifically pertaining to the Endo, however, is find one you like. If BG control isn’t an issue, you may only see him/her twice a year, but having a good endo that you get along with and is experienced will make your overall time feel much better.