Thanks, David. That’s what I’ve been learning about R and feel like it will be a good fit for our son given how we eat low carb as a rule.
@d_suffern I’m in the same boat, which is why I’m currently uninsured. Unfortunately, that boat is crowded. My daughter with T1 is covered with a good ( & expensive) plan, which we couldn’t afford otherwise.
You might consider checking into the patient assistance programs from insulin manufacturers if you haven’t done so already. They do have income limits but might be worth a try.
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some of those patient assistance resources can be found here
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If grieving isn’t normal then I’m the most abnormal person alive. I’ve been dealing with a whole lot of emotional baggage / stress that I’ve never felt in my entire life until my 2 year old was diagnosed with T1. At 43 years old, I feel like I’ve aged more this year than all other years combined. I cry whenever I feel like I need too. I vent whenever I feel like I need too. There are no wrong answers and grieving is totally normal IMHO. I have a son that had cancer, I have a son with Autism, I have 6 children, but all this pales in comparison to the struggles my wife and I have had with our 2 year old’s battle with T1.
But…we are fighters. We will fight and do everything we can to prove to our son that NOTHING is an excuse to not do your best and excel as much as possible. This community has been a savior to me…emotionally. I feel like I can vent here and be understood…because everyone here has done this type of venting themselves on occasion.
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BTW, one thing that’s really helped me is “venting” in a diabetes journal. I started a journal and I don’t write in it every day, but whenever I’m feeling any particular way on any given day, or when we have news or found something interesting, research wise, I just jot it down in my journal. I feel like it’s my own personal way of chronicling, for our sake and for our sons sake when he’s older, the struggles we’ve endured together, and it helps me maintain my own sanity believe it or not.
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Thank you so much for sharing your story, and I can only imagine how tough cancer in a child is, let alone autism/t1 in the mix. I get it, in part. Your determination is inspiring!
I have started a journal but never write in it…I do need that outlet, for sure. It’s so good to know we aren’t alone in this!
Thanks also to those who shared the assistance links…I will definitely check those out.
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And you’ll succeed, too. With that mindset you can’t help but. It’s a shame more kids, diabetic or otherwise, don’t get to grow up with parents like you. We are behind you 100%. 
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This is a good observation to relate, Lorraine. Our initial sense is to follow the doctor’s advice because it just seems prudent. Our 24/7 experience with diabetes combined with a willingness to experiment while logging everything soon outstrips the doctor’s expertise.
You transited this progression much more quickly than I. It took me 28 years and some crisis to finally take ownership of my diabetes. It’s the best hing I ever did.
Some of my comments here are interpreted as being harsh with doctors. It’s the context that you describe and I’ve lived through that argues for diabetes patients taking on the mantle of full responsibility that led me to these conclusions. I’m sure I could use more diplomatic language.
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Oh my gosh! Of course! There is an absolute loss. I remember not being able to look at pictures of Caleb “before” because it seemed like that life was stolen from us. I strongly encourage counseling if you have the means and even the slightest inclination to do so. Diabetes is unrelenting and the rules change all the time - if indeed there are rules! Those who manage their lives with it walk around like it’s no big deal, but it’s a huge deal. It’s a constant and emotional drain.
But things do get a little easier. Over time, little by little, things will become more natural. It won’t ever be perfect, and there will still be days to be pretty mad about diabetes, but they will be fewer and not so raw.
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Just from a standpoint of understanding what’s going on, I’d say your son’s honeymoon is almost over. It’s always just a matter of time before his immune system attacks and kills all the invaders (T-cells in the pancreas).
I’m curious, why are you talking about Novolin R? What’s wrong with Novolog or Humalog? Novolin R is a slow fast-acting insulin. My impression is that it’s an older insulin that fewer and fewer diabetics use.
As far as your team goes, sometimes they only give you as much info as you need because dumping it all on you can be overwhelming. Why burden the parents who are already stressed out with information they don’t need YET?
I think this attitude can often give patients and parents of T1 kids the impression that just diet will control their/their child’s diabetes. In the case of a Type 1, it will NOT happen. It MAY be possible with a T2, but there’s no guarantee there, either.
I remember being in a Type 1 support group and a young woman (late 20s-early thirties) newly diagnosed was talking about going so low-carb that she’ll never need fast-acting insulin. None of us in the room had the guts to tell her that once the honeymoon was over, she was gonna need Novolog or Humalog or whatever for meals.
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For someone on MDI who has a really pronounced dawn phenomenon while they sleep, NPH could probably be used to cover that more effectively than R. Although, whether you’d want to put up with NPH’s variability is questionable. I know that I never had issues with the dawn phenomenon (and actually thought I didn’t have one) until I switched to Lantus and it suddenly wasn’t being covered—then I couldn’t wake up below 180, regardless of the number I went to bed at.
…oh my. I thought I was crazy and/or “ungrateful” or something because I was struggling to look at his old pictures/life before T1. You have no idea how good it feels to hear I am not alone in that.
I really REALLY want counseling, but it’s just one more expense right now that we cannot afford. I have great friends, but I really do need to talk to a professional about this.
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I think it’s over, too. Probably why I’ve been extra emotional lately, I realize this is ramping up and we need more tools than we can afford or understand how to use at the moment!
I am under no illusion that he won’t need some faster acting insulin. I’m up for learning everything I can. But we do eat very low carb as a family and have seen continued success from countless families using R while eating low carb and maintaining good blood sugars. It’s just something we’re interested in trying.
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For many years I took a relatively low dose of R. I never used NPH but I did also use L and U. At any rate, the truth is I regard R is the most potent insulin I have ever taken. For my money, Humalog and Novolog are softer insulins, chiefly because they do not linger as long. ,
Everyone;s diabetes varies and while I took R for about 20 years I never really got it under control. If someone asked me the relative merits of both, I would say
Humalog is faster acting and leaves faster; it gave me less difficult lows
R- I would say lasts longer is more unpredictable and can cause more overheating.
I cannot say one is better than the other. But I can suggest you talk your endo there ate plusses and minuses of both.
The honeymoon is generally defined as total daily dose (TDD) of insulin < .5 unit per kg of body weight while still maintain a low A1c. 3u/day is a very small TDD for a 12 yr old.
The worry I would have with using R in a honeymooning child is that it’s so long lasting. You can control the carb intake & limit the dosing, but the honeymooning pancreas can be such a challenge.
I doubt you’ll find many dieticians who support low carb for kids, particularly in a ped endo clinic. We’ve been through a few & none of them approved, but I think they’ve finally given up on converting us. It’s hard to argue with our results (growth chart & A1Cs), so we take an annual carb counting test with the RD & they leave us alone.
Thank you for filling me in on possible effects…need all the info I can get and I will definitely talk to his endo about it.
Thanks, Tia!
Our son is barely 80 pounds. He’s normal, but shorter sized. 3 split up per day is small, but we’ve been worried bc of the fluctuations and because we dont have a CGM and disrupting his sleep is a nightmare (he also has aspergers), so, I’m worried he will tank at night when I can’t watch him.
I see what you mean about R. Perhaps that is something we can do when he is out of honeymoon? Damned if we do, damned if we dont, it seems. I want his honeymoon to last as long as it can, but it makes dosing scary. We haven’t bolused anything yet. So you think we should use the humalog we have then?
The dietitian was the one with the visceral response to our low carb approach but the doc was very happy with it and told us she thinks more people should eat this way, and that he was gaining well, on track with his growth trajectory. So…thankfully she is supportive. But it’s really hard to get a hold of her, so, it does seem like we’re flying a bit blind. So you are low carb with a T1? Is your child still honeymooning? How did you start bolusing or increasing basal? Sorry for all the questions, I know everyone is unique—just curious/hesitant.
I was diagnosed as an adult, so my situation is somewhat different, but I’m also very insulin sensitive. For the first 18 months, I only needed bolus insulin and even five years in, I only need 7 units of basal per day. That being said, I would encourage you to try using the humalog. With his sensitivity, he may need to eat a fair of amount of carbs per unit, but it may really open up his world in terms of what he can eat.
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One more thing: if we were feeding him a standard carby diet, would he even be honeymooning? I wonder if eating low carb is obscuring this somehow? Not that it’s a bad thing, just curious.
When we were first diagnosed, his doc didn’t think he had it based on just a day or two of low carb eating. We tested him over a holiday weekend and took him to the ER when his bg was over 500 with ketones after eating oatmeal waffles with real syrup. It went back down, but they said to just keep him low carb until he could be seen by his ped. That was about three days later. His ped looked at his normal bg and was like “he doesn’t have it. He’s even gained weight.” She apologized after getting the A1C back (it was 13 on the first test). They said we caught this early. Just a point of interest, I guess. shrugs
Well, we are sticking to the low carb eating as a family, but I would like to at least learn how to use humalog, get a ratio to work with. I guess I worry since we don’t have a CGM and he’s still fluctuating so much, plus he is getting resistant to us checking and isn’t self-aware or that communicative…so I have to guess a lot with him.
I’d like him to have some treats, non low carb, sometimes. Movie theater popcorn, etc. Is it possible to be low carb and bolus for occasional stuff without it throwing everything off?