Aimee,
thanks for the kind words. We have really tried to learn all we can as I often feel your lack of knowledge can be used against you in this illness. We have been bullied once or twice into taking regimens which we knew in our hearts were not right for us but for which we didn’t have a ‘knowledgeable defence’. That’s what’s led to our current predicament where we Raisinette has built up insulin resistance and we’re struggling to get her back in range - three days ago her TDD (total daily dose) was 23 and now it’s 35 - and she’s still high each evening.
The pump ‘quest’ has been terrible - we feel we’re exhausted from the pushing and fighting. Basically, they want to throw every excuse at you to turn you away even though we know it’s in her best interests.
We’re now at the point of not knowing what more we or the current treatments can do and so desperately want the pump issue moved forward - but the wheels of the health service grind slow…
Best wishes,
J
Hi Taterbugs Momma,
thanks for the great reply. Reading your story rang so many bells with us (just read it to my wife). No predictability of insulin effect, recognising the basal as the culprit (mostly), the ‘not knowing’ what if any insulin is working in her. I guess our post (our first online venture) reflects the fact that we’ve reached the end of the line as far as MDI and pen-treatments is concerned. We’ve tried Novorapid (Humalog?), Lantus, Levemir, Insulatard and NovoMix30 - any syringe options are out because of my wife’s sight - and they’re all worse than Novo+Lantus was.
We completely agree with your highlighting the CGM - if we had to choose we always say we’d take the CGM so that we can ‘see inside’ her and address the issues. She’s been great dealing with the injections since Day 1 but is growing weary of all the trials now. It can feel like she’s giving up on getting ‘better’.
Since posting I’ve learned that a pump has been ‘approved’ for us but getting it attached is a slower process. We also believe that we may be able to get CGM under the state insurance as well (the older Soft Sensor from Medtronic). We had that for 3 days last May and it was like being on a holiday - such freedom and independence and reassurance it brought. Fortunately, state insurance covers most all of the treatments though it seems the ‘better ones’ are a huge battle.
Raisinette has been high (over 15 and beyond) for nearly a month now and we’re exhausted from trying to get help as well as treating her. I just feel the advice being given is so very cautious and R feels so miserable now after these past weeks. Today has been better but as you know tomorrow isn’t necessarily going to be the same. I’ve rang the hospital three times already today (our consultant returned from holidays) and no reply. This is one illness you shouldn’t feel alone with, so thanks for the support,
Rgds, J
I wish you the best and will pray that everything comes through right away for you. Just another source that has been very helpful to us, Gary Scheiner- author of Think Like A Pancreas and many more titles (and Type 1 diabetic) has a practice in Pennsylvania that works one on one with parents on treating and dealing with all aspects of diabetes. He works over the phone and internet (Skype) and though most insurances do not cover his costs, I have found he has been very insightful at a very affordable price. Sometimes its helpful if you step back and let someone else take the reigns.
His practice is Integrated Diabetes, www.integrateddiabetes.com which contains his contact information.
Wish you the best!
If you can’t get a pump, I would go straight back to Lantus and since Novolog did not work out for her try Humalog or Apidra for her fast acting insulin. I would try to get Apidra as it is more rapid acting than the Logs for most, but not all people. A lot of Type 1s on Lantus have to split the dose. That is because Lantus can last 19 to 21 hours typically, not 24 hours. I have no idea how to analyze the split but your diabetes team could help. I would get her off the 70/30 as insulin is not typically used for type 1 diabetics. Is she stable in the absence of food? “stable” being a relative term? Meaning, can you get a basic idea of her basal patterns? If you can nail down decent basals through basal testing with the Lantus, then when you give Humalog for her meals you can analyze the bolus insulin. You may need to give more insulin for breakast and more insulin in her meals in general than you had with shots. It all hinges on figuring out the long acting insulin for the basals. Once you have the overnight basals you can figure out the sensitivity. And a pump will be necessary for puberty, early teen years when their insulin needs skyrocket at night, then drop to baseline. If Lantus does not work, try Levimir. Beg, plead and wear down your D team so you can get her the pump. Good luck and I know you can do it. P.S. Type 1 Diabetes by Ragnar Hanas and Think Like a Pancreas by Gary Scheiner will be helpful, as well as books on the Glycemic Index of food with respect to Diabetes.
My son is 11 as well. He was diagnosed 9 months ago. We found that we couldn’t control his blood sugar with one dose of Lantus. We ended up splitting his Lantus into two doses. He had it at 6am and 6 pm. Lantus doesn’t seem to last 24 hours and we got a peak in the afternoon/night. We used Novalog for food and tried to stay on a lower carb diet. Found some things peaked. But the splitting of the Lantus was wonderful. We just started on the pump. It is still a little rocky, but we are getting to the control we had before on shots.
Hi crusso,
I think you’re talking about the same issue with Lantus/Levemir that we’ve discovered. To split the Levemir would bring our little one to 5 shots a day but I think we don’t have a choice. Good to hear you’re on the pump, seems to be the ‘universal’ advice. What model did you choose/were given? Looks like we’ll get the Medtronic Veo but just when is another matter. In the meantime, we’re fighting insulin resistance built up after weeks of high numbers. Seems to want more and more Novorapid thrown at it.
thanks again,
J
We chose the animas ping. He was on such little amounts of insulin when we started the process. That was the only one that could accommodate. He has actually needed more insulin on the pump than he did on the shots. Must have lost more working cells with the high numbers in adjusting the pump. He was on 7-8 units a day of insulin. After starting the pump, we are now on 10-12 units a day. It was quite a jump. I’m sure it will just keep on climbing from here. I hear puberty really messes with numbers as well. Is your daughter possibly starting into this stage? Why does it take so much to get a pump in Ireland?
Should have read this post first…I totally agree about the growth spurts and the hormones, etc.
That book was a life saver for us. Glad you mentioned it.
This is wonderful advice. This is all the advice we were given when we started. Get a good scale as well. We use it to weigh everything. We use the Salter 1450. It is a lifesaver.
We’re looking at the Veo (though we weren’t given a choice). She’s on 35unit today with 4 injections. Last week it was 23 - that’s how messed up it is right now. And she’s still high though that’s all relative - I find we’re happy with low teens now! Don’t think we’re hitting puberty just yet but it could still be playing with the numbers. Having been high for 6 weeks when we were moved to mixed insulins, she’s developed insulin resistance and will need a lot more insulin temporarily until we can get it back to normal levels.
We just got off the phone with the endo now and we have doses for splitting the levemir. Also, have a date for pump (saline) initiation. The securing of the pump has taken over 6 months of constant fighting and persuasion, multiple attempts to disuade us and other distractions - the money apparently is there for pumps but the throughput on the training is slow and every effort is made to divert you off the track for a pump. It’s unacceptable and certainly has over-shadowed the real challenge of improving glucose control - we’ve had to divert a lot of time and energy to pushing through the pump issue. We’ve been told repeatedly that we good candidates for the pump but ‘delay’ is the name of the game.
J
Is there any hope of getting her on a pump with a CGM? It seems like having some insight into her hourly patterns might help, and while it’s hard to say whether a pump might offer her better control, it would at least take the variable of the long-acting insulin out of the equation – and could offer you an opportunity to try different carb ratios and basal rates without wondering if it was the long-acting insulin or the short-acting insulin that was dropping her low. You’ve been through so many regimen changes and used such a variety of insulins that it’s hard to get a handle on what is happening with which regimen, so maybe the thing to do is simplify the insulin piece and focus on figuring out her patterns.
Also, you’ve mentioned that you are looking at her insulin/carb ratios, but have you looked at her insulin/insulin ratio? Put another way, have you calculated what percentage of her total average daily insulin intake is composed of basal insulin (Levemir)? I have been told by my endocrinologist that the basal insulin should be 40% to 50% of the total daily dose, and that if it’s greater or less than that ratio, you can get instability. I find that if Eric’s basal dose falls below 42% of the average daily total, he starts having problems with unstable BGs, and anything much over 45% causes the same trouble. So we shoot for 43% most of the time.
It might help also, given that she has celiac, to do a fairly detailed record of what she eats to see if there are particular foods that affect her. She may have other food allergies and eating foods she’s allergic to could be impacting her BG. There are some things my son simply cannot eat because they shoot him absolutely through the roof, and I suspect he may be mildly sensitive to them.
Beyond that, the only other suggestion I might make is try switching to Lantus – I’ve been told that different people respond differently to Levemir vs Lantus, and that you can often see great differences in control simply by changing the type of long-acting insulin. Eric did pretty well with Lantus so we never tried Levemir, but I’ve seen a lot of people comment that they were on one and didn’t do well, so they switched to the other, and did better.
Having just looked back at some of the earlier replies, I hope that you end up going to a pump but wanted to warn you, make sure you have documentation of how long & hard you tried unsuccessfully to manage her on syringes, and include a record of all the different regimens you tried that didn’t work. This can be a pretty significant argument in favor of funding a pump.
Elizabeth,
thanks for the thorough answer. I agree with the basal ratio though curiously it hasn’t been raised explicitly by our endo. We’re transitioning back to 3XNovo and Levemir. In fact, we asked yesterday for guidance about splitting her Levemir (half or so in the morning and the other half in the evening). Her numbers (while generally high) do rise from afternoon through the night. It means 5 injections now but it might well help.
Once we get her insulin resistance under control (she’s been high for many weeks so we’re needing more and more insulin) we’re definitely going for that magical 43% as I’ve heard mention of that several times now.
As for CGM, we understood that it was agreed that we would get this on foot of Raisinette’s instability and my wife’s inability to notice lows or take BG. We just got a call yesterday from the endo giving us a date for pump initiation in 5 weeks time - the pump has been on the shelf there for the past fortnight. However, he seems to be drawing back on the CGM now and that has us really worried. We had it for 3 days last May and it was a real life-line. As I see it, it’s just as vital to my wife as to my daughter to enable her to fully participate in Raisinette’s care.
I don’t believe the issue is around money as I think the public health service covers the cost.
I just feel they don’t understand the ‘sight’ issue and how it plays out for us.
We’ve tried all kinds of regimens (Novomix 30, Insulatard, Lantus, Levemir, NovoRapid), different needles lengths, different sites and timings. We weigh every morsel of food cooking much of it ourselves and never eat out.
I guess it’s a waiting game now…
Rgds, J
My son is now on a pump but when he was on the Levemir injection at bedtime, he was always high in the afternoon after school. The CDE attributed it to his fatty school lunch and kept trying to correct his bolus for it. He was also sometimes high in the evening depending on what he ate and the activities in that evening which varied.
When we converted his basal/bolus ratios from our log to the pump the first week, he was suddenly always very low in the afternoon and evening. It was then that we realized that it was probably not his bolus for those meals making him high in the afternoon but his Levemir was running out 6 hours early. He was only getting basal from 9pm through the night and morning until about 3pm. So two shots of Levemir may help.
You will like the pump even though it is a lot of work to get it setup properly. During our fasting tests to adjust the basal rates (they have you fast during different parts of the day while testing hourly to eliminate the “food” affect on the basal rates), my son got insulin about every 3 minutes and stayed a constant BG of 100 each part of the day except for night when his target was set at BG of 120. So now when his BG is high, we know it is most likely his bolus.
Hi Hockey Mom,
thanks for passing that along. It’s funny how the basal (lantus or levemir) is paid so little attention at endo meetings. Instead the bolus is see as ‘wrong’ or may be exercise/food/mood/hormones/weather has played a part. We’ve never been asked to consider splitting the basal until we worked it all out last week (after a horrendous few months of different regimens) that the basal needed to be split. So we have gone from 11unit Levemir at night to 6 + 6 (morning & night). We too saw a stark rise from late afternoon through to night even on Lantus, which supposedly has a perfect 24hr profile.
We’re fighting insulin resistance from all the high numbers so need more insulin than ever (gone to 36 from 23 last week!) but I think we nearing the peak of what is needed. I don’t think 12units Levemir will be enough to replace the one-a-day 11 units though but we’ll see.
Great to hear the pump worked out for you. We have a start date now 6 weeks away so despite a few false dawns, I think we’ll begin to get ‘excited’ about it as it draws closer. Up to 5 injections a day now so that alone will be a break.
Just a note that even though everyone thinks exercise brings down your BG, my son’s BG is usually high from the excitement of the competion, the fun with friends and the physical exertion. His BG will then drop up to 6 hours after a game or practice. We also thought this was an incorrect bolus even though we too were weighing every morsel that went into his mouth and double checking our bolus/carb calculations. We also had rises due to fat up to 8 hours later. We really were only focusing on each meal at that part of the day and not looking at the total picture. It’s so confusing - people have no idea.
When my son is in the BG of 300+ he becomes insulin resistant and the only thing that works is a slow, not brisk, boring walk with a bottle of water. We have always gone with him since he was diagnosed at 15 even though he probably won’t drop too low from 300. Even now at 17, we still stay close. He prefers to walk the mall or a large store if he is insulin resistant and if we do get him to shop (which he hates) we have to be careful to have sugar handy because his BG will be too low.
Don’t give up - things will get better soon.
I agree. For my son, long swim practice makes him drop like a stone, but swim meets (with all of the adrenaline and bursts of activity) usually keep him high. The one thing i have learned about T1D management is that everybody is different. Things that some people say have a huge impact on their children don’t even cause a blip for our son. Frustrating!
Hang in there Jake! You are doing a remarkable job being an advocate for your child.
Hi jake42
We have similar issues but not as severe by the sounds of it. I think that a number of factors are making the trend analysis difficult. This might not provide you with any answers but may help understanding the dynamics that are at play.
- It sounds as if R is still producing some insulin herself or else the celiac is affecting her carb absorption rates. Her carb ratio indicates that one of these things might be the case
- Because of the low dosing of insulin it is very difficult to get balances right. Trying to increase or decrease nova rapid by small amounts is very difficult when you are only using say 3 or 4 units as opposed to 7 or 8.
- R’s insulin sensitivity will be compounded by the highs. Our son is more sensitive to insulin in the evening when he has had a settled day.
I’m no expert but for what its worth I would suggest
- keep going with the low GI foods to reduce the spiking
- When she is high small little spurts of exercise is much more flexible than trying to get the fast acting insulin correct. The reason why I suggest this is because its easier to do a ten / fifteen / twenty minute skip than it is to adjust the nova rapid from say 3 to 3.25 to 3.5 units. If you get the nova rapid roughly right you can be a lot more granular with other control methods.
best regards
felix
It really could be hormones, too, as my A1c at that age was in the 12-13% range despite our best efforts.
I haven’t read everyone’s responses, so I apologize if I’m echoing others, but you might see if Apidra is available. It peaks much faster than Novorapid and you may be able to control some of those highs with it.
I agree that you should push for a pump.
And I’m sorry you’re having such a rough time. It WILL get better.
Hello, I’m new to this thread and also new to diabetes. My son was diagnosed with type 1 in May of this year. Not sure what you have tried in terms of food, but I definately see a difference in my son’s blood sugars when he eats raw foods, especially vegetables, with very little processed carbs. We have been following a vegan diet since dx, (but, even if you were not to follow this diet), you could still make smoothies with veggies, greens, and fruits. These give my son a fantastic postprandial bs. I am a firm believer that dietary intake is the first thing to change before changing insulin ratios . . . . rather than change my son from 1:9 to 1:8, I prefer adjusting his diet/exercise and see what becomes of it. Another note, I began taking postprandials not at the suggestion of my Doctor, but by accident due to a low bs. This has given me immense control. I know exactly how foods affect his bs two hours afterwards. Like you, initially, his blood sugars looked great when I was taking them ‘just’ at meal times, but low and behold we were having bs in the 300’s inbetween meals, which I would have never known had I not begun checking his postprandials.
- Always open to learning more . . . .
Kj