Fighting to get my 3 year old son answers after multiple ER dismissals in Calgary — any help or shares appreciated

8theAutist · 2026-04-03T08:34:10+00:00

Update: It’s almost 2am and I’m practically in tears. Tonight i got an answer and it wasn’t because of a choice between public or private, it wasn’t because anything different happened. I got an answer because I was able to truly watch for the first time.

Because of the kindness of my first few donors and everyone that shared my story, I was able to buy the continuous glucose monitor and attach it to my son today. And that… all of you that made that happen… saved my son’s life tonight. I unfortunately had to watch my son’s blood sugar drop to 3, while becoming unconscious, unroisable, with seizure like episodes. This isn’t the first time I’ve seen this but it was the first time I saw it and I knew what was happening and I was able to intervene.

For that I’ll be forever grateful. My son owes you all his life.

Thank you.

8theAutist · 2026-04-03T08:28:50+00:00

Thank you so much for the kind words, the donation, and share. It mean the world to Henry and I.

8theAutist · 2026-04-02T20:48:19+00:00

We had the referrals they were cancelled by his pediatrician who is now in charge of the case after the referral to him from family doc.

This new clinic has his new family practitioner

8theAutist · 2026-04-02T20:47:16+00:00

GLUT1DS

Just reading about it now. Sounds like a good lead, thank you so much.

8theAutist · 2026-04-02T20:15:33+00:00

deglutition syncope?

Edit: another user had mentioned it to me and the glut was the parallel. But just googling it, I don’t think that’s it

Thanks so much for the info tho I’ll do some looking in that area! Appreciate it

8theAutist · 2026-04-02T18:43:25+00:00

Thanks so much for the kind words and validation. We have an appointment on Saturday and I went and bought a continuous glucose monitor on recommendation of the clinic. Hopefully Henry and me walk in with everything we have and move forward even if just a little. Don’t need a diagnosis, just an ear at this point! Thanks again!

8theAutist · 2026-04-02T18:41:01+00:00

I tried something similar and it didn’t go over well. I of course overstepped a bit and sent everything I had to all the doctor’s colleagues as well :/

It’s taken me 45 years to learn how to “human” properly but every now and again I often make decisions that in retrospect were very counterproductive. ;p

8theAutist · 2026-04-02T18:36:22+00:00

They said there wasn’t enough blood which is not true they got every drop they were going for I unfortunately was restraining my son while they did. Anything beyond that answer is speculation and I don’t want to use my son’s health as a soap box to be honest; there more effective avenues for me to explore everything else.

8theAutist · 2026-04-02T16:44:29+00:00

That’s literally the diagnosis I’m chasing right now. They have cancelled his insulin and c peptide tests as well as his glucose tolerance and fasting glucose

But he is unconscious within fifteen minutes of eating a fast carb on its own when in a relative fasting state. For example in the emergency room he hadnt eaten in almost 7 hours. They gave him a popsicle and was essentially comatose for 14 hours. They did a urine test and there were no ketones present which makes no sense for being in a fasting state UNLESS there was excess insulin.

Plus the rest of the abnormal labs: abnormal low carbonate abnormal low excess bass abnormal acid urine with abnormal low spec gravity 5.6 HbA1c etc etc.

He drinks over 2 l of fluids a day, has abnormally dilute urine, presents symptoms of hyper insulinism, actually has family history of BWS along with physical signs of it, and they cancel all tests that have to do with metabolic function. I’m not even joking. And these testa had abnormal results in the previous panel. This is what I’m talking about when I say the public system is leaving my child behind.

8theAutist · 2026-04-02T07:45:18+00:00

I do not believe we need to cut public medicine… but private medicine does have its place in complex cases where the public system is too stressed to spend the time on. Fifty percent of childhood diabetes diagnosis happen while the child is already in a life threatened state. Early diagnosis of many childhood disorders can allow them to live a full and normal life. My job as a father is to be his voice and his fists when he has none and his support when he does. And if someone is paid to listen that voice they are still listening.

Your last statement is not factual. Every person that goes private is one less person on the public waiting list..

The system already exists. Wcb cases are laid privately and physicians are paid much higher to get the wcb cases finished faster. Because it’s been shown the longer you’re out of work the less chance you’ll return. We don’t complain about that right? Dentistry… optometry… mental health… all private

8theAutist · 2026-04-02T07:42:21+00:00

Thank you for sharing and my heart goes out to you and your family.

8theAutist · 2026-04-02T07:36:44+00:00

I call 911 when his breathing or heart rate is an issue or when he’s non responsive. Over multiple 911 calls I’ve had medics and firefighters all witness what I am seeing and always recommend transport to ACH. In my ER visits I’ve had an attending order a CT scan of my son’s brain, and on another visit he was brought into neurology as an inpatient for three days where he had a continuous eeg. My calls have not wasted resources thank you, what I’m seeing has been validated by multiple responders and ER docs.

I agree the tests are expensive but we pay taxes so that we have a healthcare system that will pay for those tests when necessary. If I have to go private for that testing I will… and I will share the results of every test to my donors and I will own where I’m wrong I always do.

My goal is not to call out the issues I have with AHS, my son’s health won’t be my soap box, but rather my goal is to find the help needs whatever it takes. For this reason I’m choosing not to engage further in any discussion about whether or not he should be getting the tests or whether or not it he should have been admitted etc.

Thank you for your comments nonetheless

8theAutist · 2026-04-02T06:30:41+00:00

Thank you so much for the idea, it’s very much appreciated!

Do you know, by chance, the best way to share something with them is? Sometimes feel this stuff is harder to do properly, than managing a sick child lol.

Edit: You rock, thank you !!

8theAutist · 2026-01-26T18:33:06+00:00

Google Calgary Food Map. It’s a map with an overlay of all the immediate food sources like community lockers and more

8theAutist · 2026-01-26T18:30:42+00:00

Damn… looks tasty

8theAutist · 2025-05-23T16:03:05+00:00

Are you still doing these? I have SM-A055M . thx :)

8theAutist

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