Hi all,
first time poster and appreciate the welcome messages from members. My daughter (Raisinette, we’ll call her!) is now 11 and diagnosed almost a year. She also was dx with celiac in March this year. Raisinette is brilliant doing up to 10 finger sticks a day, all her own injections, sticking to her carbs and putting up with a lot. She’s had a tough past year - she had to change schools at diagnosis because of bullying for the past 2 years. Her diabetes control despite all our efforts is worsening (HbA1C 8.5, 8.7, 9.2).
We started with 3 X Novorapid (same as Humalog) and 1 X Lantus. In the beginning looking back, her control wasn’t too bad but gradually it worsened, reflected in her HbA1C. She was switched recently to Novomix30 (30% Aspart, 70% suspended) and Novorapid for dinner followed by Levemir at night. That caused her to go really high in the afternoon through to night. We were then switched to two injections in the morning (Novorapid and Insulatard), with Novorapid at dinner followed by Levemir at night. That didn’t work. She was experiencing 2 or more hypos each day with plenty of over 20mmol/l (360mg/dl). Last Monday, she had 5 hypos because she had a little more exercise than normal which we didn’t plan on. We couldn’t get enough carbs into her to hold off the effect of the insulatard. Raisinette is getting very despondent and physically tired. This past week, she has woken with a low most mornings.
We begun the journey to acquire a pump last March by transferring to the national children’s hospital here in Ireland. However, resources are limited and apparently there’s a long wait. We were told that she would get one last May but the hospital changed their minds. The hospital won’t discuss the pump now but we do believe one might be available in the future. We’re finding it very difficult this past year. The celiac diagnosis was difficult as is making the food from scratch. Raisinette’s mum is blind which means it’s extra hard to handle all the additional jobs.
My question? Well, we’ve been trying to find any pattern to Raisinette’s dosing - no two days appear the same. We allow for exercise, control carbs strictly, have good sites and rotate them - everything the books say. However, we do notice that Novorapid doesn’t have a quick effect. In fact, it seems to only begin to work 5-6 hours later (we check her bg during the night and it just tails downwards towards morning). Has anyone experienced that? We do find the belly works somewhat faster but still about 4 hours. She has a small body and the belly is not a big area so we rotate through legs and back too. We’ve given insulin up to 30min before meals in the hope of ‘catching’ the sugar rise but it’s not always practical and we’re not sure it makes any difference in any case.
I’ve read books, trawled the net, taken classes but the theory is fine (insulin-carb ratios etc.) but just doesn’t apply since there’s no consistency. We don’t think it’s puberty, or stress that’s causing her instability. We try to make everything that bit easier for her while keeping her brothers attended to but we’re running out of ideas and treatments.
Any advice would be very welcome,
I really don’t have any good advice for you as we do not use those types of insulin but I wanted to let you know that I will keep you and your daughter in my prayers. Do you think that she may be coming out of her honeymoon and all of her ratios are changing?
My son is 13 and was diagnosed type I at 10 years old. He started his pump on 3-21-11. He loves the pump, but it is certainly more work then the shots as far as testing the rates etc. Good luck with your goal of getting the pump for her. Hopefully that will help. My son uses Novolog in his pump both for his basal and bolus. God Bless you and your family!
Jake,
I am not familar with using Novorapid or an NPH like insulartartd. I dont understand the thought behind giving 2 different types of long acting isulin? With levemir, I was told it usally only last 22 hours so its normal for people to dose levemir twice a day. Dropping that much at night would usally indicate the levemir dose is not correct or need more protein in the bed time snack. Do you give her snacks before bed? You mentioned the fast acting insulin is not working until 5 hour after she eats. Is this with every meal? Do you check her 2 hours after her meal to get a idea of what is going on during the 5 hours?
Have you tried switching her long acting dose to the morning? If she is fighting nighttime lows, perhaps this would help. Before pumping, my son was on a combination of Humalog and NPH (similar to your Novomix?) in the morning and Humalog at dinner. The intent of the combo dose in the morning was to get him through breakfast and lunch with only 1 shot - he was 20 months at dx. I have mixed feelings about how well the mixed dose controls. If you are very regimented in your meal times and carb amounts, it can work, but I do think it would be harder to manage in an older child. It would be my opinion that your Novorapid would be the easier one to stick with as you are trying to iron this out.
My only other suggestion, and you may be doing this already, is to change one thing at a time. Our gauge is 3 days. We make a change and watch the results for 3 days. If we are not where we want to be, we make another change. This helps to isolate what is working and what is not.
It might help if for a little while you take over her insulin regimen as much as possible. And put her on a more strict schedule. Have her eat the same things at the same times every day for a while. Have her exercise the same time every day for the same amount of time. Get rid of as many of the variables as you can, and then you can see how much the insulin itself varies from day to day. Then start changing the routine little by little. That’s what I would do.
Thanks rpwils for the quick reply. Novorapid is a rapid acting insulin, same as Novolog. You’re right about Levemir but our consultant chose the one injection before bed. We don’t usually give a snack at bedtime unless she’s low and might not have enough carbs for the night. Yes, her Novorapid (Novolog) is very slow-acting even when done using the stomach. 2 hours post meal usually has a higher number that comes down (if we get the dose right) by the next meal.
We’re out of ideas I’m afraid. But it’s good to hear from others. Thanks, J
Theresa,
thanks for the kind words. Novolog is the same as Novorapid and what we would use here in a pump. I know the pump is a lot of work but right now we’re caring for Raisinette on an hour-by-hour basis anyhow. She’s always carb counted, never eats sweets, eat ‘good’ foods. I can’t wait until we get a pump if only to give us a better tool to help R. Maybe the pump will help her Novorapid take effect quicker and let us do ‘easy’ corrections. Thanks for your thoughts, J
Thanks Aimee,
I think they’re pushed us on to other more exotic (old fashioned) regimens simply to be seen to doing something. I didn’t expect the intermediate acting insulin to work but we were pretty much forced to try them. I did hear this morning however that there is a pump for R in the hospital. However, they won’t say but they seem to suggest it’ll be a month or so before they can ‘wire’ her up. They also said that she would have a day in the hospital followed by two weeks on saline in the pump. From your experience, is that similar?
Rgds, J
I am sorry that you and Raisinette are having such a challenging time!
Excellent that she will be getting a pump soon - push hard to get it as soon as you can - the way the insulin is delivered in small, tiny, doses will be extremely helpful as will the ability to quickly address highs and lows…only one insulin on board (novolog/humalog) in and out of the system quickly. As you prepare for the pump - have you read John Walsh “Pumping Insulin” - I highly recommend it - it will tell you everything you need to know about pumping!
I would back away from any kind of 70/30 mix, if you can, and get back on a regimen of long acting insulin as the basal and then give injections every time she ingests carbs as the bolus, this will also be helpful as you transition to pumping. I understand that the numbers are not stable in that case either - but better than having these fast/mid/long acting insulins on board all at once dovetailing with each other - I am not surprised you are seeing these kinds of swings in her bg on the 70/30 regimen.
Don’t get to tied up in the A1C numbers, sadly the big D is a slow race, yes, we would love to see A1cs and bgs in range all the time but if they are not - tomorrow is another day. That is what my son’s endo told me when we were having a rough go of it. Staying away from those lows is a good goal.
Many of my friends whose children have celiac have found buying gluten free foodstuffs over the web to be very helpful -
I just did a search for gluten free products great britain - for example www.gffdirect.co.uk and www.glutenfree-foods.co.uk - which mentions Ireland GMS scheme ) maybe these kind of sites will be helpful to you? Also note that with her celiac means potential malabsorption of foods until she becomes more stabilized - this will also have an impact on the insulins ability to do it’s job, thus the seemingly 5 hour impact of novolog?
I hope this is helpful to you!
All the very best,
Barbi
my kid with D = Malcolm 17yo, dx@2
What a frustrating, scary experience for all of you. My daughter was initially started on NPH and humulin at diagnosis at age 12. I think this is probably similar to your Novomix. We had a very, very hard time with that type of insulin. The peak is very unpredictable, and you have to change your child’s eating habits to match the insulin. We had much better luck with lantus and novolog – maybe you could try that regimen again? Lantus doesn’t have a big peak effect, so you might not get those nighttime hypos. Also, it would allow your daughter to eat what she wants and then match her insulin to her appetite. A pump, of course, really should be your goal, and it sounds like your daughter would benefit greatly from it. Keep pushing, and maybe her doctor could help push for it too?
As for the ever-changing numbers, the honeymoon phase is likely a part of it, as is your daughter’s age. My daughter’s numbers were wild for the first few years, changing from day to day. Now that we’re past it, we can see that growth spurts affected her numbers, as did her menstrual cycle (even before she actually got it). Many girls become quite insulin resistant during their menstrual cycle. My daughter’s 16 now, and things have gotten better. The BG swings aren’t as severe most days. But, the variability is – sadly – just part of this disease. My brother has been a type 1 for 30 years (and maintains an A1C 6 or less!), and while he’s relatively stable most days, he says there are days that just completely surprise him – highs or lows that seem to come out of nowhere. Stress can send your numbers soaring (and it sounds like with bullying and changing schools, your daughter has had lots of stress), and even something positive, like laughing can affect your blood sugar. When my daughter was first diagnosed, if she was having a great time with friends and laughing a lot, she used to go low!!
Hi daneenm,
thanks for advice. I agree that I think Novorapid (Humalog) works best, at least in theory. The other 2 regimens the docs put us on recently were a disaster and to my mind caused a lot of needless suffering.
The mixes are problematic and we were stuck with pre-mixed insulins (rather than mixing a dose ourselves) since my wife (being blind) couldn’t manage the drawing up. We are generally very strict with the carbs and snacks (always <10gCHO). It’s just that the effect of Novorapid is very slow and each day seems to rewrite the rules no matter how many variables we try to account for. For example, we know if she runs in the school yard right after her lunch (and insulin) then it will work much quicker in her. However, if it rains, they stay indoors - things like this.
I also agree with your gauge of making small incremental changes - it gets harder to stick to that though when you know strongly that something is wrong and you’re tired of seeing her so ill. We’ll keep trying.
J
Laura,
thanks for the ideas and they’re tempting. We have done restrictions like that a lot in the past but could find only the loosest of connections. Even half units make such a difference (she’s only 11 and 30kg). We’ve seen differences due to injection sites, exercise (different types and durations), and obviously food. For example, we found that exercise ‘off her feet’ like horse-riding brought her low many hours later while walking say had a more immediate effect - though the degree of the effect is never predictable. I work with numbers but no matter how much data I gather on Raisinette, there isn’t enough of a pattern to make my ‘predictions’ work.
I know this sound very despondent but we’ve been working hard on this for almost a year - every minute of the day is spent debating it and while we do try to lighten the load for her (e.g. I do Levemir in her back at night, take finger pricks during the night) she’s very commanding of her diabetes and always wants to know what the hospital is saying or why they’re changing an insulin. We do our best to play down any problems but when she’s feeling bad, you have to be more engaged rather than dismissive. It’s a tricky balance.
J
Barbi,
really appreciate your kind words especially on tricky days like today. I totally agree with your comments on 70/30 - we held out on that for a long time, especially since my wife (who’s blind) dreaded the need to have food ready for the insulin that was coming down the road (cooking mishaps are common!). It’s been a dismal day and we’re just running on empty with this fight for a pump. Kind of a perfect storm of problems. I’ve read all the usual books (and you’re right John Walsh’s book is very good as was Hanas, Type 1 Diabetes) but she seems to be so unpredictable.
We used to think it might be the celiac but since her biopsy in Mar '11, we’ve been sticking religiously to a gluten-free diet (that’s a real pita) and she’s not had any symptoms. We’re really careful on the food front and Raisinette is fantastic in that she eats only good healthy stuff - loves carrots & brocoli - we’re lucky with her.
Appreciate the product research - we’re lucky that we live near the border with Northern Ireland (part of UK) so can find some products there much cheaper than at home. Postage from UK is often more expensive than shipping from UK to US! We make a lot of our own gf bread and chocolate cakes (yes, I know but dark chocolate is surprisingly good on the carb front). I make a nice cereal bar for her breakfast but most gluten-free cereals/foods are high GI and she’s often hungry later so we make a lot from scratch.
God, this all sounds very negative, it’s just we’ve tried everything I can think of. I guess today it’s our hospital’s treatment of the pump issue which is makign this seem worse.
Really appreciate the support, thanks,
J
Serena,
thanks for your experience. I completely agree with your assessment of the mixes - they have been a disaster. However, we were pushed into trying it as a ‘way to make life easier for you’. Yes, the pump is the goal but in our case our doctor is in agreement that she needs one but there are apparently very few to hand out. She was granted one last May when the doctor (in a moment of weakness) said that we really did need one. However, we learned by accident a few weeks later that his nurse (who never met us) objected to our ‘jumping the list’ and the order was cancelled. Our case is further complicated by my wife’s difficulty in detecting lows (she’s blind) and my daughter’s hypo-unawareness. She had 1.8 the other day and didn’t sense it. They acknowledge these difficulties but seemingly the list must be adhered to. We’ve been fighting for the pump for months now and I’m told one is at the hospital for her but they won’t say when she’ll be initiated. She’s read all the literature, watched all the set change videos etc. but she’s very despondent after having been let down before.
It could be puberty that is messing with her numbers but nothing is starting in that department yet. It could be celiac but we’re very rigid on that front. She is stressed about the hospital and the constant dealings with them - she hates going for her checkup though we need them to try to force their hand and move things along. School has improved a lot since she changed last Sept. though she needs a lot of extra attention because of her lows which can annoy other kids.
I’m probably sounding very ‘down’ but it’s just been a tough day and our hospital just won’t budge. Over here, we pay taxes for universal health care which is where the pump would come from - actually, it’s already paid for - as well as CGM! On top of that most people pay for private health insurance (around $4000/family) but that only covers hospital admittances. And on top of that we pay for all doctors appointments and medicines since they’re not covered by those insurances. There isn’t a way to pay privately for all the necessary services - we’d spend all our time (and money) going to different specialists in different places.
Ah well, thanks for your time and appreciate the help,
J
You might be so surprised - and I certainly hope so! - when she goes on the pump - it is very different to have small wee amounts every few minutes opposed to injections all at once.
On the food front - you are so on top of things…but just a mention that it doesn’t matter what the carbs are - nothing should be off limits - it is ‘simply’(!?) making sure that the insulin given reflects the carbs eaten - weather chocolate cake…yummy! or carrots (which, btw make Malcolm go sky high!)
Important: You don’t sound negative! all of us have struggled with this relentless 24/7 condition - the worry we have as parents and the concern about ‘what now’ is ever present - that is why these kinds of social networking sites are so very important for all of us!!! Malcolm has had type 1 for 15 years… so I get what you are saying. These kind of sites are where you can vent!!! G-d only knows how many tears I shed with my cyber friends on particularly challenging days - we are all here to support and understand one another!!!
First let me say our thoughts and prayers are with you! This disease is so challenging to manage…you have found a great place for information and support!
Two thoughts for you…
Do you have access to her insulin in pens instead of vials? While this may not solve most issues, I would think the pens would be easier to manage for your wife and daughter. My daughter is 11, almost 12, and uses the pens herself all the time. You just put the needle on and dial up the dose on the end. She has someone else look at it…me, her dad, her brother (who is 14), even a friend sometimes if she is away from us, and then gives her injection. It eliminates the challenges of drawing up insulin which is much more difficult.
Also, have you looked into a temporary use of a CGM? Even if you cannot own one, same issues I would assume for you as getting her a pump, there may be a program thru your doctor or thru the company which services equipment to your area. Many companies will let you “try before you buy” to see if it works for you. You might be able to have her wear one…rental maybe…for a couple weeks which would give you insight into how her BGs are running at different times of the day. Try doing an internet search for the companies that would provide you the equipment and call them directly…nothing to lose right? This could provide you with very useful information as to how to dose her insulin.
Keep us posted and best wishes! We are here for you
Cheryl,
thanks for the kind words. Yes, we use pens and in fact, ‘Raisinette’ does all her own injections (from day 1) except for one in the back each night which I do to ease her other sites (she wants to do that one too!). Your idea of a temporary CGM is a good one. Actually, we learned indirectly that we have a pump (with CGM capability) delivered to the hospital but they say that we won’t be initiated for a while - no specifics. They guard their pump list carefully and won’t engage in any discussion around it. However, I am ringin Monday to put it to them that we might use the pump for CGM connectivity while they ‘decide’ when she might get to use it for insulin.
We did have a CGM for 3 days last May and they were 3 wonderful days - we caught 2 likely lows each day. It was a really good break from the ‘not knowing’. However, it just wasn’t long enough to draw a lot of conclusions and her needs changed a lot since then.
Seems I spend all my time on the phone battling for progress,
Hi Barbi,
I temper my enthusiasm for the pump so that I don’t over-reach on my expectations. Also, to our doctors they like to view our eagerness for a pump as irrational. Yes, nearly all accounts praise the pump and the freedom it gives. Right now, we’re effectively held hostage by diabetes. I accompany my daughter everywhere (my wife doesn’t drive) and stay to watch for lows. We’re hopeful to get CGM with the pump too and that would be fantastic though I would hope that the pump would eliminate lots of her lows (and highs).
I agree on the food front too though our initial hospital have been very strict on setting a carb limit for a day. As we go along (and certainly if a pump were in the picture) we have introduced dessert on occasion so Raisinette could enjoy a treat, especially since coeliac took away a lot of her choice.
I checked out the site you mentioned (not on it) - haven’t really done much on sites, though I do browse on occasion. I keep (with a little help) my own blog to help folk with recipes etc., especially on the coeliac front (sligosweetspot.blogspot.com).
John
I don’t blame you for feeling down – how can you not when there are therapies/technology that can help your daughter, and all that’s standing in the way is bureaucracy! And, it’s just so hard to understand with your daughter being unaware of her hypos, and your wife being blind, that they are hesitating to give you the pump. Yes, you may be jumping a list, but there are extenuating circumstances. Is there some sort of appeals board you could write to? As you can see I’m frustrated for all of you!
Have you looked at the Children With Diabetes website - www.childrenwithdiabetes.com? I know they have a UK conference, so maybe you can find someone who’s nearby, and has already worked through the system, and might know better than we Americans do, about how to get things done there. JDRF has a branch in London, but that probably won’t help, will it? Have you tried the Diabetes Federation of Ireland? (http://www.diabetes.ie/Website/content/default.aspx) I have no idea how helpful they might or might not be, but here in the states, the American Diabetes Association can be very helpful.
In the meantime, if you can get her switched back to Lantus and a fast-acting insulin, like humalog or novolog, you would likely at least reduce the number of hypos she’s experiencing. And, believe it or not, all those hypos are probably adding to her A1C because we often all end up overtreating the lows. We were amazed at the difference when we got my daughter off of NPH. It was like getting our lives back again (to a degree, anyway!) and not having to be slaves to the insulin schedule.
Obviously the best solution for you is an insulin pump, we pray that it happens soon for you!!!
A child in my support group went from 10.2 A1C to 8.1 in just weeks of being on the Omnipod. Puberty hormones did play a big part in his issues-- His Lantus regimen (pre-pump) went from 32 units/day to 64 in addition to 8-10 Hemalog shots and still couldnt get below 300 mgdl. Since being on the pump, so many of their problems resolved, as have ours.
The basal insulins such as Lantus were a big factor in our problems, as you never really know when they are working best or not at all. No two days were the same for us, constant highs and bad lows… I could give the same exact meal and have completely different results. Since being on the pump, things have became far more predictable. Keep pushing for it!!! Contact pump manufacturers, there are good people in the world that would take your situation into consideration and be willing to help.
Some things that have helped us with the onset of insulin/food has been switching to “Apidra” insulin- it seems to work faster than even Hemalog, I can see on his CGM it begins working in as little as 15 minutes on my child (3yrs old). Also, I have been breaking his meals into two portions, but bolusing for the entire meal prior to eating. I then give the second portion an hour to hour and 1/2 later. This isn’t always practical, but what is with diabetes???
I will say that from our experience, a CGM was the best “answer” to resolving our issues (or at least figuring out what they were). The addition of a pump made things all the better and I do feel I can finally breathe again. When I was looking into a CGM, I called about pricing and the Dexcom would cost roughly $1300 (USD) plus supplies without insurance. Its a lot, but very worth it. Even if you didnt use it all the time, you could use it on an as needed basis to help sort through whats going on behind the scenes.
I really feel bad for your situation, and hope that things move forward for you. Diabetes is tiring enough without having to deal with battling doctors and insurances. But keep fighting!!!
