Have you used diluted insulin?

[twicker1]

I think I mentioned this months ago, but I was wondering if anyone has ever diluted their insulin? My son, 5, has been dx 1 year now, and he is super, super sensitive to fast acting insulin. He use to be on Humalin/Humalog and now he is on 5 Lantus/ .5 Novalog in the morning. That's it. He still has some mid morning lows due to the Novalog, and even if he is over 400 I can't give him any Novalog because he will plumet well below 50 within thirty minutes.

I have talked to his doctor, and she is hesitant on diluting because she said I had to take a class. She switched him to the Lantus/Novalog thinking his sensitivity might not be as bad as it was with previous insulin.

So, has anyone had any experience with this? I hate that I really have to keep him from eating too much because I can't make any corrections with insulin at this point. He starts kindergarten in three weeks and that is a whole other headache. I don't know where to start. I've been trolling the other threads about "starting school".

[selketine]

William used diluted humalog until he went on the pump. You do not have to dilute it yourself if you can find a pharmacy that does presciption compounds. There should be at least one in your town that does this. They order the humalog and dilutent and do it for you.

Even if I had to do it myself it would have been well worth it. I wouldn't think it is hard to do.

I just find it amazing that you've gone a YEAR like this! Your doctor really should have found a way to get him on diluted insulin or even better - go to a pump! With a pump you can give doses as small as .05 units. He really needs a pump. And absolutely investigate doing a 504 plan with your school if you are in the USA and he is going to public school. ONLY a 504 plan will give him protections if they do not follow the health plan. And thats my opinion and it is worth everything you paid for it!;)

[melissabeth]

I agree! We used diluted insulin with my son for a few months to try to control his crazy highs and lows (often from 400+ to 32 and back all in a few hours...), and it helped a little at first but we're SO happy with the pump. Definitely worth looking into!
Melissa

[paigemom]

My daughter just came off diluted insulin and is now on Novolog with a pump. We had been using it for a month since her onset. We had to go to the hospital to get it as they compounded it there. The one problem was that it only lasts for two weeks after it is opened. We kept having to draw up so much diluted that she would have been switched to regular soon anyway. She just started on the animas pump that allows .025 doses.

[selketine]

The one problem was that it only lasts for two weeks after it is opened.

The maker of humalog says that diluted can be kept up to 28 days IF you put it in the fridge, only 14 days if you leave it out: http://pi.lilly.com/us/humalog-patient-vial.pdf -see page 2

Yet it it makes 2 bottles and we could not use 2 bottles ourselves. We generally kept one for back-up as our pharmacist had no one else to give it to.

[twicker1]

Yeah, it's been a hard road for the past year. I still don't think we have everything under control, but it is definitely better. I mentioned the pump at his last appointment and she kinda shrugged it off and said "it takes a lot of committment and regular appointments". I think she doesn't think I'm committed to his appointments, and I've never had the classes for carb/insulin ratios.

What happened was we went to our appointment in January, and when we were leaving and setting our next appointment, the last part of April they wanted us to come back was not "on their computer" yet, so they asked me to call back in a couple of weeks to set the appointment. The next couple of weeks were horrific because that's when they switched him to Lantus originally (no good reason) and he was rarely under 300 for over 2 weeks. Our "new" CDE would not return my calls and I ended up calling a doctor on call to tell them I was switching back to NPH.

The next month I found out his teacher (K4, private school) was resigning and I was up in arms over that. I had, however, been in touch with our "new" CDE AGAIN about his BG, but never actually made the appointment. Well, when I finally realized I never made the appointment, it was the end of March. The first available appointment was June 8th! And that wasn't even with the actual endocrinologist!

Just a word, I'm outside of Houston, and we use Texas Children's Hospital, supposedly one of the best children's hospital's in the country. I have called several pediatricians just to see if they had any other pediatric endos they might suggest. Nope. They all refer their patients to TX CHildren's, so I don't really see where I have any choice but to stay where we are.

However, I am going to check into the diluted solution again. We have one compound pharmacy in town. I'm just afraid that the school is going to want to send him home if he is over a particular number such as 300. That is not at all uncommon for him and he comes down pretty fast on his own, but if I could give just a little bit of rapid then that would help. Thanks for all the help.

[twicker1]

Oh, he is going to attend public school this year, and even though this elementary has not had a student with diabetes, the district already has it's policies set up. Like, the teachers are not allowed to even TOUCH glucometers, so his meter has to stay in the nurse's office. I don't like that, but they say that he is not old enough to take care of it himself.

[selketine]

I believe there are guidelines in Texas that specify that students can self-test. I think if his doctor agrees that your child is able to self-test then they are allowed to carry their supplies and do it.

See this document: http://www.dshs.state.tx.us/diabetes/PDF/HB984.pdf

You might also want to check this site: http://www.ipump.org/legal/education/texas_1.htm

I would suggest you have a 504 plan for your child - the CWD site has sample plans and the Amer. Diabetes Assoc. site has good info in their school discrimination section on your rights. Specify in the 504 plan that you want your child to self-test. I guess I'll add that you want to make sure that your child IS able to self-test and know what to do if the number needs to be acted on. My son is 4 and doesn't self-test yet (nor is interested in trying). I think when he starts kindergarten he will still need someone else to test him.

Our pedi-endo's appt. book is like that too - if I forget to call when the month we need to go opens up then we have to wait until the next month. :rolleyes:

[twicker1]

Yeah, he can test, but their thing is he has to be able to test himself and do what is appropriate for that reading. He can test himself, but he doesn't know that at 76 he needs about half a juice box, but at 55, he needs to drink the whole thing. I am definitely looking over those links though, thank you.

[EmmasMom]

We used diluted Humalog with Lantus because the Lantus seemed to make Emma extra sensitive to the H. Our endo taught us how to dilute it ourselves and provided us with the diluent, (yes that is how it's spelled ;)) sterile vials, and larger syringes. There was not a pharmacy here that would do it for us. It wasn't terribly difficult, but was a little extra nerve racking!
I found almost immediately that it's peak time was about 30 min to 1 hour later than non-diluted. We were already giving it post meal because there was no way we could make her eat a certain number of carbs, (she was 11 months-old). She started having huge spikes after meals, but then would come back in range an hour later than normal. It was very frustrating because if I tried to correct the spike, (before I realized what was happening) she would always go low. Ugh!
I think if there is anyway you can convince your endo that you are ready for the pump it would be best. The measurements are sooo much more accurate than any syringe! I also disagree that pumping requires more commitment than MDI, at least not for us! I was much more stressed out and obsessed with documenting everything then, because I HAD to be. If you are on top of your child's care, willing to test frequently, carb count and monitor ketones, you are ready for a pump!

Good Luck!

[selketine]

I don't know that even if he doesn't self-test that you couldn't keep a meter in his classroom. Or possibly he could self-test and the teacher would then inform the office of the number so that someone could come and give juice or tabs if he is low. It seems in theory the teacher could do that if it was spelled out (and the child tested himself).

Does he recognize his lows? I don't have a problem with kids going to the nurse (or wherever) to test depending on how far away it is and if an adult goes with them if they are young like your son (and not another kid). In our school the health office is a close walk from just about anywhere but I've read about some folks where it is a building next door! So...I think you need to think about what YOU would like and go from there (plan A, plan B, etc). I would guess that if he can test but can't act on the number himself then I'm not sure it is worth arguing for self-testing at this point.

This is a link to Lahle's website: http://www.isletsofhope.com/diabetes/law/public_schools_1.html
She collects lots of info on schools and diabetes and feel free to email her - she can be very helpful. Note that her link on Texas is broken but the document is still there (one of the ones I referenced to you). I'll have to let her know ;)

[Jordana]

I've been diluting insulin for my son for well over a year. The thought of having to attend a class to dilute is just plain silly - you're doc seems a bit protective! Here's what we do (we being myself and husband) to dilute: take the bottle of diluent we get for free from our endo, take out 2 cc's, and put in 2 cc's of humalog. Roll to mix.

If you know how to draw up insulin into a syringe for shots, diluting will be pretty simple. If your child is very sensitive to insulin, I highly recommend pushing the issue with your doc. We had to push hard and now our doc tells us that he doesn't know why he didn't think of it himself.

[twicker1]

Well, I just called the compound pharmacy and they acted like I was crazy and asked why I would want to dilute insulin and said no they didn't do that. I'm going to leave a message with the "dose change hotline" and wait for them to call me. With only giving him .5Novolog, if it leaks or bleeds at all I am pretty sure he isn't getting it.

[twicker1]

Oh, when I told them I wanted it to give smaller doses, they told me that you weren't supposed to dilute insulin.

[EmmasMom]

twicker- you can't dilute Novalog, only Humalog. Maybe that's what they meant???

Jordanna- are you diluting and using a pump?? I can't imagine needing a smaller basal or bolus than .025. Amazing.

[twicker1]

I never even mentioned a name of insulin other than saying that I wanted to know if they had experience with diluting rapid acting insulin. That's when they started asking why I would want to dilute it and that you can't do it. Oh well, I'm going to call the doctor's office.

[EmmasMom]

I was amazed at how few pharmacists know anything about diluting insulin. Like I said earlier, we never found anyone here who was willing to do it for us. Our pharmacist at CVS, a huge national chain, didn't know it was possible either. Crazy!

[selketine]

You really do have to call around and find a compounding pharmacy. CVS would not be one. I don't know if any of the big chain pharmacies do compound prescriptions. Around us it seems to be specialty pharmacies - almost like mom and pop places. Not that they aren't sophisticated but they specialize in compounding so they are actually far more knowledgeable than your usual pharmacist.

We belong to an HMO and they have 1 guy (sometimes 2) at our center that can do compounds and he is a busy man!

[twicker1]

Yeah, that was a compound mom and pop pharmacy that I called. I started trying to find out about diluting and he seems more complicated. I thought it would be, you mix half insulin and half dilutant, and then to get .5 of the insulin you would draw 1 full unit of mixture.

I don't think he got any of the insuling this morning. I let him eat 2 "sugar free" cinnamon rolls, gave him his shots (BG 168). Two hours later he said he was hungry, checked him and he was at 261. When I gave him the fast acting, it bled a tiny drop, he screamed and it immediately bruised.

I remembered someone saying something about the "slant" of the needle tip so I was careful to look for that with his Lantus shot and he didn't have a problem with that one. I still haven't figured out why sometimes they leak, or bleed and bruise, or are perfection injections. Any clues?

[Amy C.]

Don't be fooled: Sugar-free cinamon rolls contains just as many grams of carbohydrate as sugared rolls. Read your labels carefully!

To keep an injection from leaking, be sure to release the pinch before pulling out the needle.

[twicker1]

Oh, I definitely check the packaging! I just finally conceded to buying a couple of packages. First time we've ever tried them. Most of the time I never buy anything sugar free (EXCEPT drinks and syrup, all sugar free). I HATE when people say, "oh, this is sugar free, here try this", when it has all the sugar alcohol and usually more carbs than the real food! I also hate when I run across someone that tilts their head and says, "well, maybe he'll grow out of it". I just hate all the misconceptions! Sorry to rant, I'm sure there's another thread for that here somewhere! HAHA!

[Jordana]

Jordanna- are you diluting and using a pump?? I can't imagine needing a smaller basal or bolus than .025. Amazing.

Yup, my son uses diluted insulin for the animas pump. When he was dx'd he was only 6 months old and the boluses were waaaaay too much for his little body. At this point (he's now 22 months old) we only need to dilute because of the basals. At our next check up in August I'll run the numbers with the endo - I suspect we are about done with diluting, or maybe we'll just strengthen it again. But until recently a change in Evan's basal of .025 did affect his numbers - crazy huh!?

[EmmasMom]

Yup, my son uses diluted insulin for the animas pump. When he was dx'd he was only 6 months old and the boluses were waaaaay too much for his little body. At this point (he's now 22 months old) we only need to dilute because of the basals. At our next check up in August I'll run the numbers with the endo - I suspect we are about done with diluting, or maybe we'll just strengthen it again. But until recently a change in Evan's basal of .025 did affect his numbers - crazy huh!?

He must still make a lot of his own insulin! My daughter is also 22 months old and is averaging 10-13 units a day now. Her lowest basal is .15 and even with that her bs will rise, (we use it between 2-6am). Even at dx's at 9 months she was getting 2-3 units a day.
Maybe you caught it so early that the insulin he's getting will help his pancreas continue produce it's own longer than normal. That would be great! Did he have symptoms at dx's, or was his D caught with routine blood work?

[pookas]

We use Diluted Humalog. Novalog cannot be diluted. I know this because HUnter was on Novalog and such small amounts that he had to go to diluted and our Endo. found out they don't have a dilutent for it so we switched to Humalog. Same w/ Lantus, it cannot be diluted. As for mixing it, I do it at home. i didn't need a class, just went to the endo.'s and the nurse showed me how. She mails me the mixing supplies as I need them and the large syringes. I mix about 4 bottles each time and keep them all in the fridge. It was pretty nerve racking at first, but I THINK I have the hang of it now. i could probably find someone to mix it, but they are at least 1/2 hour away and it saves me a trip each month if I just do it myself. I wish the company would make it that way already!!

Linda-[NEPA]-Mom to:
Hunter, 5 yrs, dx'd 11/14/05 type I
Colby, 7 yrs, migraines

[Jordana]

Ya know, I have no idea if he's in a prolongued honeymoon phase or anything. Our endo said he was out of his honeymoon at our first check up 3 months post diagnosis, but I didn't know enough then to know the difference. Evan today uses about 3 units per day, if I were to not dilute. But I don't think that necessarily means he's producing his own insulin. I've noticed that the amount of insulin children need varies greatly from child to child. One small child can be using as much insulin as a teen - it really just depends on the individual.

When he was diagnosed he was in severe DKA - poor thing! He'd lost a lot of weight, was drinking like a fish and peeing through disposable diapers in an hour or two, and finally when we brought him in he had labored breathing. But his blood sugar was 'only' 436 - a lot lower than many people in DKA. He spent 3 and a half days in ICU. Bleh - I still hate thinking of how sick he was then, and how long it took my husband and I to realize he needed medical attention.