Unstable diabetes despite using pump therapy - long post sorry!
Our son was diagnosed with type one a week after his fourth birthday and he is now eight years old, he also has a diagnosis of coeliac disease. He was immediately placed on Levemir, one injection daily but within a matter of weeks it became apparent this was not enough so Novomix 30 was added to the regimen. We bumbled along for eighteen months with unpredictable highs and lows and after constant discussion with the team and an ever increasing Hba1C it was decided to place him on mulitple dose injections and carb counting, with long acting Lantus at bedtime. This still failed to stabilise him and we were told our only option was pump therapy and we were place on the waiting list.
In October 2009 I attended my first training session for pump therapy and just over a week later Benedict was started on pump therapy, this is when the trouble began!! That first night alone, I had to complete a set change over three times as the cannula/delivery from the pump failed. I had two hours sleep that night! Sad to say, this became a nightly pattern for that first month... cannula failing, pump failing, basal rates forever fluctuating. For the first time ever I was having to treat dangerously low hypos in the middle of the night or deal with dangerously high bloods and ketones. The whole process terrified Benedict and he truly thought he was dying, as a result he would refuse to go to bed and wake with terrifying nightmares. The diabetic team did not know what to do, for the other eight kids on pump therapy were doing fine. The medtronic nurse was very arrogant and when I asked her if any other peolpe had issues with the pump she replied "only one... and they don't want to make it work!", I don't know how I kept my hands off her!!
By February 2010, Benedict's attendance at school had deteriorated to zero and we were advised to home educate. He totally resented the pump and had begun to disconnect it, pull out the cannula and smash the pump against the wall! So back to MDI... this lasted for exactly a year but in March of this year he became dangerously insulin resistant and after two hourly checks day and night, waking with vomitting and ketones, we were advised once more to place him on the pump. I only agreed with the proviso that, I would have consistent medical input and not be left to fend on my own.
Since March of this year we have had weekly visits from the DSN. Benedict is still totally unstable. I cannot remember the last time I got to bed at 10pm, my earliest bedtime is midnight if I'm lucky... I have been known to finally crawl into bed at 3am and this will often occur several nights in a row. Not only are we constantly changing basal rates and setting tempororary basals, we also have to change carb ratios depending on the amount of carb eaten. If Benedict eats a meal of over 40 grammes we have to change the ratio from 1:20 to 1:25, otherwise he would have a crashing hypo within an hour of eating. We cannot look beyond the day in hand and this uncertainty is very waring on us all. Both my husband and I have serious chronic health issues and we also care for Benedict's three year old sister too.
If you've reached the bottom thank you for reading. All advice/comments welcome.
Wishing you a good day
San
In October 2009 I attended my first training session for pump therapy and just over a week later Benedict was started on pump therapy, this is when the trouble began!! That first night alone, I had to complete a set change over three times as the cannula/delivery from the pump failed. I had two hours sleep that night! Sad to say, this became a nightly pattern for that first month... cannula failing, pump failing, basal rates forever fluctuating. For the first time ever I was having to treat dangerously low hypos in the middle of the night or deal with dangerously high bloods and ketones. The whole process terrified Benedict and he truly thought he was dying, as a result he would refuse to go to bed and wake with terrifying nightmares. The diabetic team did not know what to do, for the other eight kids on pump therapy were doing fine. The medtronic nurse was very arrogant and when I asked her if any other peolpe had issues with the pump she replied "only one... and they don't want to make it work!", I don't know how I kept my hands off her!!
By February 2010, Benedict's attendance at school had deteriorated to zero and we were advised to home educate. He totally resented the pump and had begun to disconnect it, pull out the cannula and smash the pump against the wall! So back to MDI... this lasted for exactly a year but in March of this year he became dangerously insulin resistant and after two hourly checks day and night, waking with vomitting and ketones, we were advised once more to place him on the pump. I only agreed with the proviso that, I would have consistent medical input and not be left to fend on my own.
Since March of this year we have had weekly visits from the DSN. Benedict is still totally unstable. I cannot remember the last time I got to bed at 10pm, my earliest bedtime is midnight if I'm lucky... I have been known to finally crawl into bed at 3am and this will often occur several nights in a row. Not only are we constantly changing basal rates and setting tempororary basals, we also have to change carb ratios depending on the amount of carb eaten. If Benedict eats a meal of over 40 grammes we have to change the ratio from 1:20 to 1:25, otherwise he would have a crashing hypo within an hour of eating. We cannot look beyond the day in hand and this uncertainty is very waring on us all. Both my husband and I have serious chronic health issues and we also care for Benedict's three year old sister too.
If you've reached the bottom thank you for reading. All advice/comments welcome.
Wishing you a good day
San
Replies to This Discussion
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Permalink Reply by Rhee on -
San , I have no advise for you , but I wanted to let you know your not alone. My dd was dx at 2.5yr , 5yrs ago now. we started on 6-8 injections she was dka on admission and in ICU. We are on a pump ( thankfully) we have more success than you , but we also have to check 10pm, 1am , 3am on good nights, just in the last 6-9months , things have gone bad for us, with Cassie have a funny reaction to insulin she has constant stomach pains, and the insulin sometime does work sometimes works to well, example , for 3 nights were in 14-18 ( sorry in australia , 252 -324) and we correct hourly as she gets ketones easily , we will be lucky if she comes down to 10 by 6am, the next night , woth no changes to insulin rates or food, we will fight to keep her above 4 , the next night in the 8's (144) and we only give half the correction and it brings her down to 2 (36). No-one knows what to do , we have just had exploratory surgery to rule out cealiac , ulcers and crohnes, and I guess we will have more. Anyway thats our story, I wanted to let you know your'e not alone I am feeling helpless, frustrated angry worried and scared, I'm very tired and sometimes I don't know how to go on and I cry for no reason. But I do go on, and will and I know you will to I'm so sorry , I deal with the night mares but not the anger ( yet) thinking of you and sending you hugz
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Permalink Reply by Jodil on
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Hi Wooly,
So sorry to hear you are having so many problems. Just know you are not alone... I too don't necessarily have any advice but my son was dx last year a month before his 9th birthday. His sugars sometimes are all over the place ranging from 2.4-18 (40-306) for no reason. At recess at school he can be high one day and low the next eventhough he eats the same thing everyday and uses a scale for his insulin so doses are pretty much the same depending on his sugar. Two nights ago, he was 300 at bedtime and I gave his 8 units of basal (Lantus) and in 1h30 he dropped to 150 eventhough Lantus IS NOT a fast acting insulin and all his Humalog was out of his system. Doctors cannot explain this drop eventhough it has happened many times. The reason this is a problem is when this happens at bedtime, we end up keeping him up so we can keep an eye on his blood sugars b/c we don't know where it will stop in the night.
We too NEVER get our 9 year old to bed before 9:30-10pm and before diabetes he was in bed at 8:30pm. We have a meeting a school tomorrow to slap us on the wrist since our son HAS ALSO missed quite a bit of school due to illness and to bad nights in which we let him sleep in in the morning and go to school at recess. We have a social worker involved and I am constantly fighting the school and WILL KEEP fighting since I pay taxes and my son is entitled to his education. The school does not cooperate with us AT ALL and seems to not have any interest in his diabetes.
We are going on the pump most likely in the next year in hopes of stabilizing his sugar but unfortunately the nature of being diabetic is the fact that sugars are not stable.
My dad (70 years T1) , myself (10 years T1), my older brother (30 years T1) and my son (1 year T1) are ALL Type 1 diabetics. I have had it for 10 years yet mine is the most unstable of all of us and I already have severe gastroparesis as a complication (My stomach no longer works due to nerve damage and I am on almost all liquid/puree diet b/c of this).
Just know there are other parents out there in the same situation. Hang in there, my husband and I know how you feel as we NEVER get to bed before midnite or 1am and diabetes is a 24 hour a day job with no pay and no vacation. On top of that my son has ADHD and mild Asperger's so we really have our hands full.
Can I suggest maybe you go for a second opinion with another endocrinologist? Maybe there is one with more experience in pediatric diabetes management? Do you give your son his shots? Do you carb count? Are you rotating his injection sites or did you? Just trying to think of things that can impact blood sugar.
If you need to talk, just post and I will answer.
Take care,
Jodi -
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Permalink Reply by Natasha Bowlds on -
Have you ever noticed if the drop at bedtime happens about 6-8 hours after he has exercised? This happens to my son regularly, and when someone explained it to me, we began to notice that the harder he played, the more likely he was going to drop severely about 6-8 hours later. I typed this and then read how much experience you have with type 1 - so maybe you already knew that . . . but it was a big deal when we learned it - we can prevent hypos at night at least a little more often now.
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Permalink Reply by Aimee on -
This disease can be so different for everyone. My daughter was Dx'd at 3 years old and now she is 7. We have days where her numbers are all over the place, but luckily that is not normal for us. It can be so stressful when it happens; I can only imagine what you are going through. I am not sure how many options you have for doctors, but my only advice would be to seek out a doctor that is willing to try different regimens until you find one that works for Benedict. I will keep you all in my thoughts and prayers.
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Permalink Reply by Taterbugs Momma on -
In June I started my son (age 3) on the Omnipod, and honestly, the beginning was pretty rough. The best thing that I did was contact Gary Scheiners practice, "Integrated Diabetes" and let him take the reigns for a bit. Diabetes is so stressful, and though my insurance did not pay for the "pump retainer" service, it was worth the money to take a break from trying to solve everything myself. I read his book, "Think like a Pancreas" and that made a big difference in understanding diabetes care. The pump-retainer service is done either by phone or Skype. You send over daily logs, and he replies back with what to change. They also do phone consults where you discuss problem areas, food/carbs, and other diabetes related issues.
Another good read is Accurate Guide to Carb Counting, which has made a big difference to us- there are several factors that affect bg levels such as fiber, proteins, etc. My son has 3 different carb ratios for different times of the day, in addition to different correction factors. I know celiac disease throws a twist into everything, we are fortunate to not have that issue, but a few members of my support group do and I know it is very wearing on you.
I wish you the best, and hope you are able to receive help with getting this worked out. If you are interested in contacting Integrated Diabetes, http://www.integrateddiabetes.com is their website and contact number is on it. -
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Permalink Reply by NatalieHodge on -
Do you know garyS six digit provider number? I am considering starting to work with him too...
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Permalink Reply by Taterbugs Momma on
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I am not sure what that is...?
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Permalink Reply by MarysMom on -
Dear friend,
I can sympathise with you. I wish you had good medical help.
When we first started pump thereapy it was difficult at first because you have to find the right basal rates.
A child is very hard to pinpoint at times due to their ever changing hormones during growth spurts.
Mary's sugars can be quite troublesome at times, but things are looking much better for her since we switched to the Minimed.
I wish you could come to my area in the USA to the Helwig Diabetes Center! We leanred so much and the nurses there are always on call for you.
I'll pray for you. I know what it's like not to get sleep~ -
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Permalink Reply by type1tot.com on -
Hi, I feel awful for your difficulties right now. Lack of sleep and your own medical problems are too much to tack on to this already difficult situation.
My son is just 2 so I haven't had any experience with the emotions of big kids yet...
But he is on a Medtronic pump and is relatively stable. We had a rough start because at first we were using the Sure-T insertion site which his body just plain rejected. He'd be high as a kite within hours of a site change. I now use the Silhouette (angle-in cannula) and it works much better though it's trickier to insert on a wiggling toddler. I still see the random unexplained high that ends up being attributed to a kinked cannula. They can't all be winners and last 3 stress-free days.
As for the post meal drops, have you tinkered around with dual wave boluses yet? If your son is eating a slow releasing (low GI ) food like pasta or pizza, he shouldn't get all the insulin for it up front. A good amount of those carbs will "pop" around 4-6 hrs later depending on how fatty the dish was. For something like mac n cheese, I'll give 40 % or so of the total insulin up front but spread the rest out over 6 hrs. It's a very handy feature. Perhaps you can get a different Medtronic rep. It's such a cool device; a better (nicer) teacher will help you fully utilize it.
That being said, there's not much you can do if your son is set against it and pulls it out. Might have to deal with his (understandable) terror first before progressing with the pump. Another thought might be to give lantus and set the basal to zero for a while so he can get use to the ease of the pump but feel secure he won't go into DKA. granted, that defeats half the purpose of the pump- gettign to tweak basal rates- but it might help as a first step towards comfort. Please let us know how it goes. Good luck. Theresa (type1tot.com) -
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Permalink Reply by Hockey Mom on -
So sorry this has been so hard. My son loves his Omnipod pump but it did not initially make his Blood Glucose numbers improve. It ws only when we switched to another Certified Diabetes Educator that was more knowledgeable about his pump did we get really good results. His last A1C (after wisdom teeth surgery when he was higher than normal for two weeks on purpose) was 6.5 - really good for a teenager. This CDE has been trained by the pump manufacturer.
I think getting the basal right is the key and it is hard to do with the food and exercise interfering. We did fasting "basal testing" to make sure that certain parts of the day were stable as far as basal. At eight your son may be able to tolerate this. It is not an all day fast. The nighttime one was - eat a low fat dinner but no bedtime snack prior to 6 pm and then test every two hours until midnight. The other nighttime one tried to determine when dawning effect started (if it did) by starting readings at midnight and so one until you found the rise. My son has an increase of insulin at 3am so that he wakes at 100. If my son does not eat or exercise, he stays at 100 or 125 at night for hours at a time. (This fasting basal testing is quite common if your doctor has not recommended, I would ask about it)
Next we added the food, counting carbs and setting different ratios for different meals of the day - dinner is higher fat and breakfast is higher carb. We strive for 100 premeal breakfast and a return to 100 before the next meal - lunch. We only test at 2 hours if he is not at 100 for several days in a row in order to see how much he is rising in between. We almost never make corrections unless he has had a pod error and needs to get caught up on insulin. Our CDE hates people correcting unless a emergency of course because it can lead to rollercoasting up and down all day.
My son prefers to eat the same thing for each breakfast and lunch during the week. He has the same breakfast and takes the same lunch so he doesn't have to count the carbs. When he gets tired of pancakes for breakfast, he switches to cereal or bagels for a while and then back. I'm glad because it makes the school days simplier for us both.
His lows during the night after hockey have been our biggest challenge. After a year and a half, I no longer have to set the alarm and check on him at 6 hours after a game or practice. I feel pretty confident at this point that the temp basal that he sets will keep him high enough through the night. He gets so mad when I wake him up to test and he is fine. He goes to college next year so I have been trying to back off. I don't know how you mothers with younger ones cope! -
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Permalink Reply by MsShelly on -
San,
So sorry for your troubles I know how hard it can be with a type one child my son is 9 diagnosed in 2007. The only thing I can think of that might help is a Continuous Glucose Monitor. We use one when my sons blood sugars become troublesome and it does help level him out for a while. He uses a Dexcom 7 after wearing it for a week and carefully studying the readouts we get from the charts you can print off the computer I can usually spot trends where I can adjust basals and boluses. If he is going low after a bolus up to about 2 - 2 1/2 hours I decrease bolus, if it is longer I go with basal. Kind of the same with highs if it takes a long time for him to come down after a meal I increase bolus nights are easier to adjust basals after supper bolus wears off. If a CGM is not for you another thing you can try is checking every 2 hours sounds like you do this already. Make a chart extended for every 2 hours using a line for each day, fill in his bg every time you check and look for patterns that way we use a highlighter yellow for anything over 200 blue for anything under 70. Hope things get better. Use short basals about 4 hours apart and increase and decrease them like one for 12:00 changing at 4:00 or as needed. -
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Permalink Reply by Hockey Mom on
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We also did this with a Dexcom CGM that our endo has for check out purposes. She put it on him, showed him how to calibrate it daily and then took it off in a week. The CDE wanted Greg to see how his fatty fast food meals are causing him to rise and also show how his BG is affected by hockey with not enough insulin due to temp basals. With that information we adjusted his carb ratios and eliminated his temp basals during hockey and increased temp basals after hockey.
He really liked knowing what his BG was and how it was trending without an extra fingerstick. I really liked being able to go into his room in the middle of the night and know about what his BG was and whether it was going up or down. We went on the waiting list for the Navigator CGM since it had a further range (50 ft )and he would not have to carry it onto the ice with him but it is no longer being sold in this country due to problems with FDA approval on the sale of the company that made it.
So now we have nothing except an old fashioned meter and fingersticks for BG. -
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