Hello Everyone, I am new to the diabetes community and I really need some advice. I am the mother of a 7 yr old type 1 diabetic now for 4 yrs. We have been very blessed from what everyone we know with diabetes has said. He has been on 2 shots of NPH a day since his diagnosis: morning shot 8 units and afternoon shot of 4 units. Humalog has always been an issue for him when we used it. His numbers dropped so quickly it was scary. So we have avoided humalog for about 3½ years. His control has been amazing with A1C levels being the highest at 7.2 and as low as 6, up until now.
He has had some major highs for several weeks now. After learning he is in a growth spurt, my doctor (who I absolutely love and trust) has suggested three possible treatments.
Continue with the regiment of two shots daily with this adjustment: 10 NPH mixed w/ 1 unit of Humalog in the morning and 6 NPH mixed w/ 1 unit of Humalog in the afternoon.
Go to 4 shots a day of fast acting insulin
Switch to the One Touch Ping pump made by Animas
My husband and I are going with option 1 for now but we really feel we need to consider fully the pump option. Our son DOES NOT want 4 shots a day and I don’t want to see him have to go that route. Not to mention, people struggle taking a child with special needs that are life threatening for a couple hours or for a night. He wants so badly to have sleepovers and just be able to be with friends and family without Mom and Dad hovering around. I can’t say I blame him. That doesn’t make for a very “normal” life. This is why the Ping pump sounds so interesting to us. What scares us though is it uses all fast acting insulin and as stated early he doesn’t do very well with it.
We know absolutely nothing about pumps except what I can find through the Animas website and brochures. What I want are reviews from people using the Ping and thoughts from people who have had to make decisions like this. Any response would be greatly appreciated and valued. Keep in mind with all the crazy number of 300’s and 400’s for two weeks our son’s A1C actually went down from 7.2 to 6.5. Crazy stuff!!! However, the humalog really does affect him greatly. He had a low today of 52 with only one unit of humalog and exercise. Currently we use the Freestyle Flash meter and like it. Any thoughts or suggestions would be greatly appreciated.
I was dx at the age of 6 when I was in first grade. Let me tell you what my parents did for me. They took me off NPH and switched me to a 60-40 mixture of U-100 Semi-Lente and Ultra-Lente. I did very well with this mixture until puberty and did have highs about 3-4 days before I got sick and during the many growth spurts that happened. You should definitely have your son go to a diabetes camp if you can. I never had the opportunity because my parents couldn’t afford to send me, but my friends that did get to go had a terrific time and got to be away from their parents and be a kid. It allows the child to take the active role in control and the parents just kind of oversee it. Most camps are for 8-17 year olds so your son will be old enough to go next summer. I have not kept up much on the insulins since I switched to U-100 and am not sure if they still manufacture U-40, but it is not quite as strong as U-100 insulin. Another thing to think about is switching to the Squibb-Novo brand which is Novolin, Novolog, etc. I, myself, found much better control with the Novo brands than the Huma brands. I use Animas and truly love the assistance I get from them. Another thing for you to consider if you haven’t already is having a Child Specific Aide for your son at school who is trained to help him with his blood testing and even using his pump should you get one. Many pediatric endos recommend pumps for their patients to keep them from having complications later in life.
Fast acting insulins are the only ones that will not clog the tubing of the pump. You could begin the pump with using plain Regular insulin instead of using Humalog or Novolog. There is a new insulin called Apidra too that you may want to consider for his use in the pump, but try it for coverage before you use it in a pump because it acts much quicker and leaves the body a little quicker.
My husband and I talked about sending him to a camp next year just to meet people who also are like him and have to check sugars, give shots, and just cope with the disease. It is very hard to cut those apron strings we have on him. He’s still our baby no matter how old he gets. As for school we have an aide that travels every where with him. It is awesome and we are blessed.
When you were on the U-100 mixture, how many shots were on daily?
Do you think the pump would be helpful for him right now at the age of 7?
I just wanted to add that I was diagnosed when I was about your sons age. I was on 2 shots a day with NPH and a small amount of regular for years. I am on a pump now and use Novolog with it currently. I can say that I only wish I went on a pump much sooner and think it would have made my control growing up better/easier to manage (especially during my teen yrs) and also being active in school sports. Being a child with D’s is very difficult I know. I think considering a pump is a good option if it is something your son thinks he would feel comfortable with and he has a good grasp of carb counting too. If not, I would probably stick to 2 shots a day if that works better for him for now. There are many more options available now and more information then there was when I was younger. Pump therapy was mentioned to me over the years but I was always afraid to try it not really understanding it entirely. But I’m glad I finally did.
Just like Catherine said I think having your son go to a diabetic camp would be great for him too if that is an option. I did one summer and had a great time. It was really nice having other kids like me that I could relate to in that way. I remember going swimming,hiking,horse back riding, singing around camp fires, having talent shows, going bike riding and more. It was a blast! I remember having a counselor in our cabin who was diabetic too. We all shared high and low blood sugars too! Everyone looked out for one another there. I went away for a week and that was my first time away from home for that long. I think I was about 8 or 9 when I went. So if you can send him next year I think he would really love it!
Welcome to the community Kendra! Another thing to consider is that the pump can deliver very precise doses on insulin-- much smaller doses that can be delivered with a syringe. So if he is very sensitive to Humalog, then the pump could be a good option. If the pump units are not small enough, then you can also dilute humalog in saline solution.
You should show your son some of the pumping kids in our community and he can ask them questions.
If he was dropping on the fast-acting insulin, wouldn’t it be because you used too much insulin for the food? Or, as in our case, the duration of insulin action is four and a half to five hours. So we have to check my niece’s blood sugar two hours after eating (she usually has insulin on board and we have to give her free carbs). There is a newer insulin Apidra, which has a shorter action which may help with these problems. I think the NPH is the unpredictable basal insulin. Who knows when it peaks? It is unpredictable. As a BASAL insulin Novolog is very steady. The fact that insulin does not match food well is just the nature of the beast. I am all for the pump. I think it is great. You can get much better control and with a pump, correct when you need to, increase or decrease insulin as needed via temp basals. I think the pump will make your son’s life so much easier for him.
Hey Kendra,
I’m like a few here - diagnosed at your sons age as well - but for me it was back in the 60’s when there was only certain types of insulin (I injected once a day until the 80’s I think with NPH - my sponge brain doesn’t go back that far ). Along with urine testing - things are so different now. I only went onto the pump over a year ago - after many years of multiple doseage injections (MDI) - I averaged about 8-12 shots a day. I know, sounds horrible - but compared to the needles I was using in England at one point in my life - sharpening them on a stone - ugh - to what we have now - pen needles with short needles at 31g - Teflon coated - well - you get my drift - not so bad if you have to inject multiple times. The only reason I went onto the pump was more for the heck of it - from a few diabetic friends jibing me about being on needles. I had no intention of purchasing a pump after doing a few trial runs with different pump manufacturers - but I did in the end. I presently use the Animas 2020 - like the Ping without the remote control - but I’d like to upgrade to it if it’s not too expensive - and it is aimed at children - who don’t require much insulin (and yes - it uses fast as a few have mentioned above).
The other thing that many children will use for injecting small amounts of fast acting insulin - is pen needles - that inject 1/2 a unit (I use the Novo-Pen Junior - comes in cool colours). I used these myself - as I’m sure adults do as well - because I don’t need a whole 1 unit of insulin - it will send me into no where land - fast!!! If you ever did decide to go onto just using fast acting insulin for when your son eats (bolus in the pumpers world) - or has to do a correction for his blood sugar (correction bolus in the pumpers world) - then that’s the way to go in my humble opinion - along with a long lasting insulin which acts like the basal function of an insulin pump. I know, a load of information to take in - but give it time - do your research - ask questions here - we’ll help you out.
Oh, I use the Flash as well - it’s the best thing since sliced bread - uses the smallest amount of vampire blood on the market. I’ve gotten a few other diabetic friends to switch over to that - as noone really likes to prick their finger - but it’s just one of those things that we have to do in order to stay healthy - and for me - I can probably do it in my sleep - it’s like flossing my teeth (oops - that reminds me - must go brush my teeth - it’s beddy byes time here in Montreal).
Anna from Montreal aka FatCatAnna http://www.diabetes1.org/blogs/Annas_Blog
My heart goes out to you. I’ve had to deal with my own Type 1 diabetes but only since I was 41. The thought of having one of my sons diagnosed as a child is daunting, to say the least. You sound like a wonderful, caring, compassionate mom.
Obviously, I don’t have personal experience with a child with diabetes. However I do know that when I went on the OmniPod about 1.5 years ago that most of the people using it were kids. I love my pod! It’s tubeless and has given me freedom PLUS much better control. Nobody really needs to know that I have a pod unless I choose to let them know or choose to wear it where it’s easily visible. Some kids put stickers on their pods. I like their style.
One wonderful aspect of all pumps is that they deliver a slow, steady small amount of insulin all the time. Pumps use just one kind of insulin, the fast-acting kind. While that might sound scary to you, it really helps even out the highs and lows. Once the basal rate (that slow, steady amount of insulin) has been determined, the next steps are to figure out how many units of insulin are needed to cover carbs and how much insulin is needed to correct highs. As Kristen said, pumps deliver very accurate doses of insulin. Mine goes down to tenths of units.
To me, pumps seem more like a pancreas – one kind of insulin delivered at different rates depending upon food, exercise, illness, etc. The difference with a pump is that WE have to do the thinking. There’s no autopilot like people with healthy pancreases. But once it’s set up correctly – and that can take a while of testing, changing, adjusting, experimenting – it’s SO easy. I change a pod once every three days and during that time I just check my BG and calculate carbs and let the pump do the math.
There are so many options out there, Kendra. Unfortunately, each person with diabetes has to figure out their own best option because we’re all so different. One size does NOT fit all but there IS a size that’s just right for your son.
I was diagnosed at age 5 myself, but things were a bit harder in 1956. Anyway, 1 thing that affected me after using NPH for some years was that the response time varied wildly at times, with no clue as to why. Made control a lot harder, so I was switched to Lente, which worked better. Unfortunately Lilly has stopped making that, as far as I know, but there are 2 other possible slow acting insulins available now: Lantus and Levemir. Same thing from different manufacturers.
Either 1 may only need to be shot once a day, unless he happens to use it up faster. Happens to some people, then they go on 2 a day of whichever. Unfortunately either of them needs to be shot separately from fast acting insulins, so that may not be something you’d like to use.
As for using an insulin pump it should work fine once he’s running it correctly, which usually takes about 6 months. The main thing, as has been mentioned, is that he’ll have a lot better chances with it since basal rates (around the clock schedule, not mealtime boluses) is set in 0.025 Unit increments so it can fit him much closer than shots can ever hope to.
Boluses are set in 0.05 Unit increments so the same applies.
I didn’t mention yet, but I use an Animas 1250 now, and will (hopefully) upgrade to a Ping soon since the warranty wears out in October. Would help if I had a job AND health insurance…
I’ve been using insulin pumps for the last 15+ years, though the first 2 were MiniMed pumps.
As for his A1cs seeming so strange we always need to remember that an AVERAGE is exactly that. Multiple highs and lows can combine to get almost any average you can imagine, though not likely very low or very high. It’s also possible that his highs clear off before the glucose scars the red blood cells, since it takes several hours at high levels to make scar tissue develop, faster highs just glance off, as it were. Also since carbs drive bg up real fast, then drop it fast afterwards he may not show the effects on A1c if he doesn’t eat much protein to stretch it out.
Is he prescribed the seemingly “normal” high carb diet, with little protein or fat. That idea is outmoded, diabetics really need more protein and fat since cholesterol is NOT as bad for us as too many medically trained people believe.
I also suggest you look at Novolog, which for some of us (me included) just works more efficiently than Humalog ever did.
I went away for a week and that was my first time away from home for that long. I think I was about 8 or 9 when I went. So if you can send him next year I think he would really love it!