This is not a question that I ask myself. I know why I am tired. You on the other hand may ask this of me. Maybe you won’t ask me aloud, but maybe you’ve thought to yourself why am I more tired than others. I am sure some people think I exaggerate my exhaustion, or bring it on myself, or even do it for attention. There is one reason and one reason alone that I am so exhausted and that is for the health, well being and ultimately to keep my son alive. Yes, when you boil it down, I lose hours of sleep to keep my son from slipping into a coma or dying.
Let me break it down for those of you that have no experience with being a caregiver for a child with Type 1 diabetes.
Every night I check my son two hours after his snack, which usually ends up around 9:30 pm. That number requires a decision: treat with insulin, give sugar, or leave alone. Treat with insulin and leave alone have me checking again at 10:30 pm. Give sugar has me checking again at 9:45 pm, 10:00pm and then again at 10:30 pm.
The 10:30 pm check also requires a decision of some sort: treat with insulin, give sugar or leave alone. You would think that the previous numbers would have some impact on what the 10:30 pm would be, but that would be too easy. If I am lucky enough to see two ‘do nothing’ numbers in a row I can go to bed. If I see either a ‘treat with insulin’ or a ‘give sugar’ number at this point then I follow the same sequence as above both scenarios ending with a testing time of 11:30 pm.
My goal is two ‘do nothing’ numbers in a row at the hour test.
This goes on and on and on.
And on.
If I see two ‘do nothing’ numbers as my only numbers of the night I am usually good to sleep until about 5:00 am when my own internal alarm clock wakes me up wondering if my son is ok.
If I see any other number, ‘treat with insulin’ or ‘give sugar’ I must set my alarm about 2 to 3 hours after the last check to make sure that we didn’t see another dip or rise in glucose. Sometimes highs and lows are stubborn and even though they may be gone for a bit, they do appear again.
Highs that go unnoticed while sleeping can cause DKA. Lows that go unnoticed while sleeping can cause seizures or death.
Picture this in your own life. You had the greatest day at the beach with your two little ones. Everyone was happy. Everyone was safe. Tan. The smell of salt water still on their skin. You all shower. Snuggle into watch a movie knowing that everyone will drift off to a well deserved full night’s sleep. Except one of your little ones has diabetes and his blood sugar happens to be 39 ( a low low as we call it). You can scratch that well deserved sleep goodbye. Come hell or high water you cannot fall asleep. It could mean life or death for your little one.
The phrase, “Not on my watch,” takes on a whole new meaning when it’s a piece of your heart, your reason for living for whom you are keeping watch.
Tired, yes. Looking for sympathy, no. It is what it is, but now you know why I may seem more tired than other moms you know.
(Writer’s note: It took two days to complete this post as I was too tired the first day.)
@ Hannah- I’m glad to hear you are doing well. My son will be 18 next month, so we’ve done all the “teen” stuff. My guess is it was just lucky for you that you never went severely low at night. My son has surely had his share. I don’t routinely check at night unless it has been a bad day for him D wise. You have no clue what our kids’ regimens are, so you really can’t comment on it.
@ Mark- Moira beat me to it. While it is true that 8 yr old’s need independence in their care, it is TO A POINT. NO 8 yr. old should be handling their D care alone. The consequences of wrong decisions can be deadly, and DEAD is not learning point. “Parental interference”. Wow. In an 8 yr. old. With a serious disease. Can you just imagine the counter productivity . . . Wow.
Mark – Remember that not all 8 year olds are created equal, remember that. My daughter has many other issues that will not make her even remotely close to independent by the age of 8. She has motor skill issues and dyslexia which means she can not independently read her meter (she will do her test herself), she does not interpret the number well – but does ask if it is a good # or not, and I will not allow her to operate her pump since she can’t read what it is asking for on her screen. At the same time, while I believe our kids needs to learn independence, they also need to be children and some small children are very responsible while others are not, it’s really up to the parent at what age their child is ready for that huge responsibility.
I know the teenage years are hard, with or without diabetes, and I was by no means belittling your experience. I am sorry your daughter rebelled like she did and sorry you had to watch her go through that, but just like small children are not all created equal neither are all teenagers…not all react like your daughter did. I am also sorry your marriage did not survive, I find that with these kinds of diagnosis’ you either crash and burn or come out of it stronger. I am lucky, we are one of the strong ones, and most of the care falls on me for our family since my husband has MS and is getting worse by the day.
Good luck to you! I hope life treats you well.
Moira,
Mmmm … maybe I should respond to this comment :
” … Mark – you are lucky your daughter was older when she was diagnosed, and can take care of herself. … ”
I don’t think so. The highest risk is where T1 diagnosis is in the teenage years. Poor outcomes are not uncommon. A T1 diagnosis really upsets the apple cart for teenagers. They are beginning to think independently and they are searching for a sense of identity. So they often don’t listen to parents. But they don’t really understand what is happening to their bodies or what is going on around them. As a parent sometimes you just have to hope for the best.
We had to deal with rebellion, acting out, running away from home, depression and two suicide attempts – using insulin. This happened because Caroline hadn’t had the opportunity to internalise and accept her new reality. She didn’t take ownership of it because she had not accepted it as her problem. It worked out in the end, and while our marriage didn’t survive the strain, the outcome could have been much worse. IMO dealing with childhood T1 is much, much easier.
I would also like to leave with this thought ….
I do believe that you have a golden opportunity, because of the age of you T1 child. And that involves, through conditioning, getting the child to take responsibility and accept ownership of this condition. This happens when you step back and let the child take more responsibility. Like everyone else, they make mistakes, and watching them is no easy. But this is how you ensure the best possible long term outcome.
The good part is that children enjoy taking up the challenge, and I am saying this as teacher. By the age of 8, T1 children should be doing pretty much all their own testing and making their own routine decisions. And they need to be allowed to experience the consequences of not making the right decision. That is how they learn. While parental interference may be well intentioned, it is counterproductive.
Best wishes and keep up the good work.
AS a RN who works in a busy pediatric ER,and more importantly the mother of 2 with type 1, I have to 100% disagree with the statement that “as long as your child has a basal rate going in he or she will not go into DKA.” Completely and totally not true…seen it happen hundreds of times, seen it happen to my 2 year old. You absolutely CAN go into DKA with a basal rate going in and it MOST DEFINITELY can happen overnight especially with toddlers. Also want to respong to the statement “Lows are not that dangerous either. While they may cause seizures, they don’t cause death. They don’t cause brain damage either.” Where are you getting this information? Lows are deadly. And most of the time when it comes to seizures with lows it has more to do with the rapidness of the drop than the severity of the low. I’ve known a child to seize at 68. His mother is a diabetes educator. He had a very rapid decline from a high. People die from seizures every day. You can stop breathing during a seizure. The air way can be blocked by the tongue and lack of oxygentated blood flow to the brain most definitely causes brain damage. Also, dead in bed syndrome does not ONLY affect the young. MY 40 year old cousin died in his sleep from a low. It doesn’t matter if it wast the seizure or some funky heart arrhythmia…it started with the low. Also, I’d love to know where you read that dead in bed is usually resulting from heart valve problems like MVP? I’ve never heard or read this. MVP is so common. Most people have no problems with it unless they are one of the few with regurgitation. What correlation does MVP have with hypoglycemia? Anyway, I’m gettign side-tracked, We check both of our kids through out the night. Why risk it? The risk is not worth the few hours of sleep I might gain by not checking.
Hannah – with all due respect you are 16 years old, and I pray deep down in my soul that you never have a child with diabetes. You can speak to us about it from a teenagers point of view, but not as a parent with a child. I would take this disease from my daughter in a heartbeat to keep her safe. Until you have children you will not understand our perspective.
I am also, in no way saying your parents did it wrong – what I am saying is no one has a right to tell me or any other parent of a child how to parent and how to deal with this disease. It is a decision made by the family, plain and simple, you do what works for you and what will get you through the day. What is good for the goose is not always good for the gander.
Honestly Hannah, I never tested my son at night or even worried at night when he was on a not-so-good regimen, Lantus and Novolog.
It was when we started the pump and even moreso when we started the POD that the basals are so tight that lows and highs can happen in the blink of an eye. The basals are tight because he is so sensitive to insulin that if I go up or down with basal to avoid a high or low, it goes too high and too low. I have to find a happy medium.
You sound like you are doing great and I hope my son will continue to do great well into teen years and adulthood.
Leslie
just like to point out im well aware of how hard it is as a little kid, think its hard now wait till hes a teenager its even worse. i was diagnosed at 2 i know how difficult it is ive gone through it i was merely pointing out that ive survived the past 15 years or so never having been tested in the night by my parents and being on a much worse regime than your kids are on.
Well said, Moira.
#1- None of you need to worry about Leslie, or me, for that matter. She is a “well adjusted” normal Mom who takes great care of her kids. Her son is a great, funny kid and from what I saw, not in the least affected by his mother’s “messages” aka care.
#2- I am a nurse also and know “what I’m doing”.
#3- most of the time, when I check my son in the middle of the night, he doesn’t even know I’ve done it. Hospital checks and home checks are two entirely different animals.
#4- we are here to support each other, not tear each other down. But if you wanna dance, start the music!
Thank you for this! Keep up the good work from one T1D mommy to another
I’m wading in here – probably shouldn’t, but I am. I just want to say to Mark – you are lucky your daughter was older when she was diagnosed, and can take care of herself. My daughter was diagnosed at 2, she is now 7 and has been pumping for almost 4 years. I have gotten up _every_ single night since Dec 14/2007 and will continue to until I decide I don’t have to any more. Small children are different than adults with type 1, small amounts of activity or small amounts of food can fluctuate their blood sugars drastically. I have seen my daughter have lows 6-7 hours after activity, happens all the time. I have also seen her (like yesterday) have lows even after 2 or 3 juice boxes just because she is on spring break from school and more active than usual. So – lows don’t cause death? Interesting concept, I guess starving your brain of the sugar it needs to keep your organs going doesn’t do any damage, the seizure is just that, leave them alone and they’ll be fine I guess? Apparently no one has ever died from a low blood sugar in the world.
Sorry – but I will deal with my child’s disease the way I see fit – I would never forgive myself if I slept and missed a low in the night only to find my child gone in the morning. I understand the whole thing around the liver and releasing sugar to the body, trust me, but I am not willing to take that chance. It takes months for the liver to store up that sugar, so – one low, used up – what happens if there is a low the next day? or the day after that?
Please don’t tell me how to deal with my child’s diabetes and I won’t tell you how to deal with yours.
number at a time family. We are doing great. My son is doing great. I am tired, but that’s ok by me.
Leslie
Hannah,
I test at 1 hour for information. I don’t give insulin at that time. My son doesn’t wake from lows. I’ve caught more 30 and 40s over nite then I’d like to remember. Little ones with D are most unpredictable because of growing. The 1 hour check sometimes shows a higher high, a low low, or a nice drop from the last correction. If I saw a nice drop everytime I’d never have to check, but I don’t. No one with little ones does. It’s not that easy.
I was dx’d with MVP in my 20s. No history of heart problems. So your theory of heart problems and dead in the bed don’t really mean anything to me because anyone at anytime can develop MVP. Happened to me. Could happen to you.
I am good where I am regarding testing my son. I catch lows, I treat highs and I move on. I blog about it so I can move on. If I chose to dwell in the past or worry about the future I would not be living. We are a 1
leslie, i test more now, but for years and years we tested twice a day (we were never told different ) until i was about 14 or 15 and by no means am i ‘easy’ to control in fact i am and was one of the most complicated and difficult diabetes cases my doctors have ever seen, with a lot of problems with hypos . never tested in the night unless i woke up with hypo symptoms and hey im still here.
if you go on somewhere like diabetesdaily theres a guy on there who was diagnosed in 1945 and is still alive and healthy,if dead in bed syndrome was at all common think how many people who were raised on the extremely old insulins like nph should of died but didnt, our body has a pretty good reponse to hypos. also i went for 13 years on mixtards which is absolutely rubbish with no dka and in 15 years only had one hypo bad enough i passed out (and that was only cause i was severely dehydrated at the same time. even if you do check in the night your son probably still sleep through some hypos, its nature of the diabetes. high bg is not a problem i’ve been HI with only 0.3 ketones its only when there insufficient insulin that its a problem like mark says or when youre ill in fact thats the only time ive ever had dka was due to me having a virus.
yes april diabetes sucks but it shouldnt get to the point where youre absolutely exhausted and april if you search dead in bed syndrome many experts believe it is actually a heart condition because they believe if it was a hypo the bed clothes would be soaked and distrubed due to excess sweating and fitting. and honestly youre glad marks not in that posistion? id rather have a parent like him… i know when i was in hospital (completely unrelated to the diabetes i add but turns out diabetes and fractures dont get along well) and i had to be checked through the night it disturbed my sleep all the time and i felt exhausted through the day.
this advice is coming from people who are both healthy with no complications and have had it a long time. i also repeat i dont understand testing one hour afterwards as you have not give the insulin chance to work rapid does not peak until 2 hours and does not finish until 4 hours afterwards therefore you are in fact if you give more insulin effectively causing more hypos cause youre stacking insulin
I am good Mark. Believe me. Worry does not consume me. And worries definitely do not define my son. And he is 8, the level of responsibility that is given to him is appropriate for his age. Thanks for reading.
Hugs to you April.
Hello Leslie,
If there was any substance behind your concerns, I would support your efforts to safeguard your son’s wellbeing, all the way. But there isn’t, and it really pains me to see someone getting as upset and overwhelmed as you are.
I looked at the resource section on this website and saw where it says that high blood sugar “leads to DKA”. The reality is that high blood sugar is a symptom of the insulin insufficiency that causes DKA. It is wrong, and this really annoys me. As long as there is circilating insulin DKA won’t happen. Having said that, sickness can precipitate DKA at insulin levels which are usually adequate. But apart from that, you don’t have anything to worry about. As long as his pumo is working and he isn’t sick, he will be fine.
I can only repeat what I said in the previous message. Hypos do NOT cause death. There is a lot of misinformation around about this. The worst culprit, ironically is the JDRF. They made a melodramatic advert about T1 killing children with a view to pressurizing the FDA to support the automatic pancreas project. People like you, who now believe that hypos are lethal, are the victims. This kind of behaviour is, IMO, despicable.
Anyway, I was diagnosed T1 at age 21 (I am now 55)and my mother didn’t really get involved in my treatment. She left it all up to me. She was a nurse and she knew what she was doing. I soon took ownership of the condition and did what had to be done to manage it successfully. It was hard sometimes. And perhaps the most important thing my mother said to me is that we can’t always choose what happens. But we can choose how we feel about it. It is very true, and I choose to feel quite relaxed about this diabetes. There is no point in worrying about it. I have a history of epiplepsy too, and feel that way about it too.
I also have a daughter with T1. She was diagnosed at age 17, and that stage she wouldn’t listen to anything I had to say on the subject. So we let her figure it all out for herself. Which she did, but only after landing in hospital with DKA a few times. That was really hard to watch, but it was the only way to handle the situation. Now, at age 24, she is on top of it and often asks for advice.
My main concern is about the messages your son is picking up on, the mindset he is getting into. And, most importantly, how this is preparing him for living with diabetes. At his age and after being T1 for 4 years, he should be taking control of his diabetes. He will have to live with it for the rest of his life. And it is important that he is comfortable with this before he becomes a teenager.
I am also worried about you. Your son’s diabetes is wearing you down. You are also missing out on what should be a joyful part of your family life. At this rate it will all be over before you know it. And it really doesn’t have to be like this. My philosophy is that only the present matters. If we look after the present, the future will look after itself.
Best wishes, and don’t worry so much!
@ Mark- I beg to differ. My son is pumping and has gone into DKA a few times. He was getting his basals. He was getting insulin. And I have yet to read where every T1 death in a young person was caused by an underlying heart condition. There is NO SUCH THING as a mother worrying too much about her T1 child- period. I’m happy that you are not in our position. And I don’t care how much of a well adjusted attitude one has, diabetes can wreak havoc on a person. Just ask my son. He’s one of the most well adjusted kids you’ll ever meet. D sucks and it always will.
Hi Mark,
Thank you so much for reading. While I understand the ins and outs of highs and lows, I also understand the dangers. Same as I understand the ins and outs of riding a bike, I also understand the dangers. My ultimate goal is to keep my son happy, healthy and alive. Whether that means checking his overnight numbers until I am comfortable that he is sticking steady, or making sure he wears a helmet when he bikes, it is my job as his mom to make sure he is as safe as possible.
This post may make me appear to be a worry wort, when in reality I am quite the opposite, but I think from a mom’s perspective the greatest fear we have is losing our children with/without T1D or because/not because of T1D. If there is anything I can do to prevent sudden death, like ensuring my son wear a helmet, or eventual death, like keeping blood sugars in range as much as possible, then I will do it.
Kudos to you for living with T1D for 34 years!!! Have you ever asked your mom if she worried for you? Maybe you are well adjusted because your mom took all the worry for you.
Leslie
Hannah,
Sounds like things are going great for you! I am happy for that. Two checks a day sounds fantastic. I don’t know anyone with T1 that can do that.
Be well.
Leslie
im 16 and type 1, well ive survived 15 years since i was 2 never having had checks in the night (jeez i was only tested twice a day for years) and im still here with absolutely no complications. id like to point out hypos that cause death are so so so rare our bodies are actually pretty effective at treating hypos we sleep through 50% of our night hypos (cgms research) and there were no lasting effects. also one night of highs will not cause dka (by highs i dont mean extreme ones like 30 which are obviously dangerous). i also wonder why you check 1 hour after giving insulin when rapid doesnt peak until 2 hours so youre actually ‘stacking’ insulin which will cause hypos and also a lot of type 1s are still high at 2 hour pp but back to normal at 4 hour pp.
Well said! I am reading this at 2am after not being able to get back to sleep from the midnight bg check, knowing I needed to check again at 2am. Just know that the rest of us understand why you’re so tired. I’m off to see if the 89 I got 2 hours ago held…
I can see why you are getting so tired. Your dedication is amazing. But you worry too much. Here is why …
High blood glucose does not cause DKA. The worstit will do is cause a headache. DKA occurs when there is insufficient insulin. As long as your son has had his basal insulin. He won’t go into DKA during the night. No matter how high blood glucose goes.
Lows are not that dangerous either. While they may cause seizures, they don’t cause death. They don’t cause brain damage either. The liver releases glycogen into the blood stream, pushing up blood glucose, long before anything bad happens. This happens happens automatically when blood glucose drops below a safe threshold level of blood glucose.
While dead-in-bed syndrome affects young T1s, there has to be an underlying heart condition. Probably a mitral valve prolapse. And there is no evidence that low blood glucose is even involved. Usually bed clothes are undisturbed, suggesting that blood sugar didn’t in fact drop that low.
You really don’t have to get so anxious about it all. Also be careful about what kind of messages your son picks up. Living with T1 is no big deal for someone with a well adjusted attitude to it (I have been living with it for 34 years). Relax!
My dearest friend Sarah, whom I love as a sister, is going through this now with her beautiful 10 year old son who was diagnosed 2 years ago. More then anything I wish I could help her rest or know that i understand how difficult it is for her and how amazing I think she is and how loving and unselfish and generous she is for her son. Thank you for posting this and may all parents and children challenged by this situation be free from suffering soon!
Hi great post,
As a T1 dad, my daughter is now over the hump. you will get there too. I am a filmmaker and just completed a documentary SWEET 16, about dealing with teen diabetes for both kids and parents. Checkout trailer
http://www.facebook.com/Sweet16doc
Thanks, and stay connected as you obviously are…it is only for a time as they grow and get better at this on their own.
Dan Shannon
Oh I feel u every night. People just dont get itso
Sometimes
Thank you for reading. I am so sorry about your daughter’s dx. It is a rough disease to live with when you don’t know any different. I can’t imagine living a lifetime without it and then getting dx’d. Yes, my son has been pumping for 4 years. Those DADs are amazing and I do hope to have one for him one day.
Leslie
My heart goes out to you. My daughter was diagnosed almost 1 yr ago with Type 1 at the age of 26. The past year has been a nightmare for her, although she is coping with it all. My heart breaks for her. She went on an insulin pump 4 months ago and that made things a bit easier she says. But when I read of what people with children with this disease go through my heart breaks even more. Such a hard life changing disease and so difficult for the parents of young children.
Just a thought, but have you looked into a diabetic alert dog? They seem to be truly amazing and lifesavers– could do some of the work for you.
More hugs to you! You are amazing.
I cried when I read your post. I must be tired. Yes, I’ll take that hug. Thank you. And thank you for reading.
Leslie
How about a hug?
Consider yourself hugged.
D-parents are amazing! Really…