It’s great to read your posts. I have been using Afrezza for the past year and, IMHO, here is some advice. I use the 4-unit cartridges, and when I used the 8-units I found the inhale brought in too much powder and it would make me cough. Less is much better for me. Have you helped your son figure out a carb to insulin ratio? Once you know what this is for Afrezza you will all be happier. Of course this means you need to learn to count carbs first.
Also, I would imagine, a teens eating habits are in opposition to Afrezza. A low carb diet is by far the best way to eat. Low carb in my language includes fruit and veg and other carbs that are good. Low carb includes dense seed/grain breads, sweet potatoes, lentils, squash, veggie zoodles, etc. It does not include fluffy white bread, pizza, cookies and cakes. (Peanut butter cookies can be okay if they aren’t too big). And it does not include BIG fatty, carby meals. Afrezza is mostly terrible for those types of meals and when I do Thanksgiving-type meals I will take a combo, but lean heavier on Novolog. (Also, what does he take at night? I use Tresiba, which is wonderful.)
I eat smaller meals more often throughout the day and I would suggest you try that with your son. The habits you set now will help him down the road to manage his health.
We thought our son might also have been hormonal as he also had higher resistance to all insulins when we were starting Afrezza (and for a few months before). His endo said she thought it was the end of his honeymoon, which surprised us since we thought it had ended long before and we were just really great at managing his BG. Who knows what the explanation is?
We were wondering about whether there is an efficiency threshold for dosing Afrezza but I would not say we have seen that. He seems to do alright at breakfast which used to be his hardest meal-spikes to 300 regularly. We fed him big high carb breakfasts since snacks at school are problematic. We were in a “13 units of insulin would be too much and 12 not enough” bind. Thats when I realized that endo and assistant could not help us so went “down south” to VDEX to get Afrezza rx.
For breakfast now he takes an 8u and a 4u and hes good! NO SPIKE! For some reason though he has been forgetting his lunch time follow ups though. More time needed for the routine I guess.
But we do notice once we get into a high correction situation that we start ploughing through the 8u cartridges. Like you we are using way too much to afford Afrezza. starting to consider the option mentioned by Eddie 2 above in this thread. Since we need to knock down the spike we might try giving him an 8 or a 4u at each meal and simultaneously have him give himself a 3 or 5 unit humalog shot as the “follow up”. Need to experiment with that.
Using Afrezza in combo with the pen would allow us to have more Afrezza for corrections. It works amazingly fast for us-about twenty minutes to chop a 250 down to 150 (@ 12 to 16 units). The rest we would save for meals out and snacks trips etc. Can’t see how else we can afford the 1500-1700 units a month he would need on Afrezza alone.
It is possible we could be more efficient with Afrezza by not letting him go above 150 ever, but thats a big ask for a teen.
Another thing that took us by surprise is that his CGM is not as useful as we thought it would be for timing followups. It lags his blood sugar levels by twenty minutes. We would wait til 110 or 120 for the follow up and it would not work. We started using the fingersticks and found he was actually at 160 or 170. Part of that is the speed that Afrezza clears his system but the CGM is less useful with such sharp upwards trend we see with a meal following the first afrezza dose. Only with small snacks can he skip a follow up dose.
He wont even wear his CGM now - which is not OK since we need it for other things like titrating his basal (he injects- wont wear a pump either!). We will also need him to wear the CGM as we try out the Afrezza with Humalog second phase experiment.
We used to follow the regimen you describe but kept getting the delay or stunted growth message from endo. And I think she was right. He only recently had a growth spurt that was noticable over half an inch in about a month during which we turned him loose with Afrezza. Before he never grew more than a half inch in any one quarter, which was not how I or my wife grew. I am not an expert in diabetic teen metabolism but, unrelated to DKA at diagnosis, my son has lost and gained weight throughout puberty (which began a few months before his diagnosis at 14. Hes almost 17 now) and though muscular he has had trouble gaining weight. For now I am happy to let him go
Interesting about weight loss and growth. I was diagnosed at 12 and always
assumed I didn’t grow beyond 5’4" because of my diabetes, but this was
purely speculative.
As for weight: I lost tons of weight before my diagnosis and then after it
I started a slow gain that was never easy to control. I blame that on
genetics. I’m a reasonable weight now, but it’s not easy as a diabetic
woman. Get your son to be active and to eat right as best as you can!
Eating right also means consistency. Eating different foods in different
quantities every day of the week will be almost impossible to manage.
My son may not want to wear a pump now, and may not ever but I think this is what the new AP is supposed to facilitate. A puff of Afrezza and let the AP handle the follow ups and obviate the need for corrections (as well as basal). Will see what he thinks of that system when its ready for prime time. Meanwhile will be checking out what Eddie 2 is suggesting.
We are going to be testing the combo this weekend with breakfast.
son typically eats a 70 or 80 carb breakfast on weekend. Going got go with an 4 u afrezza simultaneously with a 4 unit humalog and see how it goes. The combined equivalent of 8 units covers at 10g carbs per unit which is the ratio he uses from lunch when he usually does not spike (from a liver dump?)
I figure he can use less than the 12 units of humalog he normally needs since he wont have the added carbs from the liver dump?
I think it is quite possible that the ratios would be different for each meal - breakfast, lunch, dinner. So that would possibly take time to figure out. And of course, the type of meal would also play a factor. So there are some variables.
When I do it my way, I am generally eating carbs only, and like I said in PM, my ratio is 70%-30% (70% fast, 30% slow). But it is definitely different for everyone. Different foods, different metabolism, etc.
But testing and adjusting are really the only ways I got my amounts. I wrote down the type of food, carbs, the timing, and blood sugar every 15-20 minutes. And adjusted it over and over.
On the plus side, you have practically an unlimited number of breakfasts, lunches, and dinners to experiment with. Because I know how teenagers like to eat.
Wonderful post, thanks for sharing. As a user of Afrezza /Tresiba for now almost 2 years, I can relate to everything you posted. I hope other parents can benefit from this wonderful drug.
You hit various nails on the head. Specially with your thoughts about learning how the normal pancreas work. I don’t think many doctors know, at least not from my experience. I had to dig online to find some information, to help me understand Afrezza.
Something you might notice after some months, is that you start needing more Afrezza in general. There was another post in DHF about this, related to increasing the number of IDEs as we start using a human like insulin again. I experienced this change probably after 6 months I think.
You mention exercise. Something I noticed (I do triathlon training) is that I do feel any Afrezza even after 2 hours, if I am doing intense exercise. But its exponentially easier to prevent a low during exercise than with injected. With Afrezza usually 20-40g simple carbs before the exercise does the trick.
The relearning hurdle is another very good point. I had a close friend trying afrezza and giving up after some time. He just couldn’t adapt to the new protocol I think, and of course his doctor couldn’t help either.
Mr Basualdo?,
Thanks for the benefit of your long term experience.
We have finally figured out what is required to make Afrezza work like a pancreas. The trick is that you need to be mindful (which my son is not or at least still learning) if you eat high carb (which my son does). He usually takes an 8u and needs a second 8u an hour later. I don’t see whats so hard about that, but I am not a distracted teenager.
My son often forgets to follow up if I am not there to remind him. Its usually no problem because he can take the second 8u as a “correction” but by then his liver has sometimes dumped extra carbs which means a follow up to the follow up (using more Afrezza than we can afford). Besides, the idea is to stay in range so you’re not completely depleting your liver and having high blood sugars.
The other surprise we had is that his CGM is not as useful as we had hoped. It is often inaccurate with a meal on board and always lags the meal spike by at least 30 pts. The version we have is Dexcom G5. We need to set the high alert for 100 given the 30 pt lag but the lowest available setting is 120. but at least the CGM alerts him when he missed a follow up, when he wears it anyway.
Afrezza is so reliable he can just time the follow up without even checking his BS or CGM. But again, getting him to remember is the trick. That is why we have given him the choice of using Afrezza in combo with Humalog. Afrezza stops the liver dump (especially important at breakfast we find) and humalog is injected at exactly the same moment. The long delay in action of humalog is well suited as a follow up or second phase insulin. It is administered at only half the dose of the Afrezza. This makes it much less likely to cause a low.
I wish it was easier to research and understand how IDE works/adjusts to Afrezza. Its amazing that people practice medicine without understanding this. Then again I suppose it does not matter as long as their is no medicine that can act like a pancreas --UNTIL NOW THAT IS! No more excuses for not knowing.
If there is to be any justice for type 1 diabetics Afrezza should be here to stay. Every one’s type 1 diabetes is different. Diabetics need to have a choice of treatments so they can optimize outcomes and manage their own risks on a day by day basis. Anything else is putting the HMO, insurance companies, pharmaceutical companies and investors in charge of practicing medicine on diabetics!
Hi
Thanks so much for this outstanding post. We too have struggled with highs with our daughter who is 17. She eats low carb (type1grit/Bernstein) exercises, and is fit. She experiences insulin resistance during monthly menses and during studying. Its very difficult to study when you are 200 +. Still she maintains an A in every class. This means she takes longer on subjects and sleeps less. Not ideal
We have approached her pediatric endo ( DD was diagnosed at age 13) multiple times about using Afrezza and are always met with " I can’t prescribe it without pulmonary function tests" and “we don’t know what it will do to her lungs”
Well…what about what all the highs are doing to her ? This is absolutely frustrating. Even last night we were chasing highs during studying for finals, and I was thinking why can’t we just use the Afrezza for times like this?
Could you PM me with tips for getting some? sawston@cox.net. Monica
Did you ask your doc about the pulmonary function tests in particular as to what they are?
Did your doc read about the various studies or just randomly said " we dont know" - well thats his job to go through details instead of just that blanket statement. otherwise whats the difference between him and the trolls that appear here
Then do the pulmonary function test. btw a full pulmonary function test isn’t even listed as a prerequisite just a simple FEV1 spirometry which can be done by any primary care doctors (actually it would be their medical assistant doing it in all likelihood) on an inexpensive handheld device. It’s about as big a deal as taking your blood pressure and literally takes 1 second (that’s what the 1 stands for—Forced exhalation volume in 1 second)
The respiratory function test my endo sent me for was an elaborate multi-step test blowing into a tube hooked to some medical computer with the technician doubling as a “exhaling cheerleader.” The test took at least 15-20 minutes and they said I was lucky I didn’t have to do the longer test! Do you think my endo ordered the more elaborate (and way more expensive) test our of ignorance, caution, or neither?
I remember “FEV1” was written on the order. I did this test at a hospital.
This was right at the beginning of Afrezza being available to us, in March 2015. I just figured it was something to satisfy the FDA and my doctor’s due diligence.
