Have any of you had any bad experiences at your local doctors office or hospital that just makes you shake your head and wonder why they don’t understand Diabetes?
This one is the most recent one.
We have had some very unhealthy and horrible experiences at our hospital and now travel almost an hour away for good care for him when he needs it. One example is, when our son had tubes put in, we had to argue with the anesthetist to put him on a low glucose IV according to his Endo’s instructions. After we said we were leaving he relented and did it. What was supposed to be a quick procedure turned into a 4hr nightmare for our our son and us. They would not take the glucose IV out once he was eating, drinking and keeping it all down. Of course his sugar went high and instead of taking out the IV they insisted they run moore tests to see why his sugar is so HI, plus they would not let us feed him lunch!! HELLO!!! There’s glucose being fed into his veins!!! They wanted us to double dose his insulin, these are nurses who you trust to know how to care for you!
Needless to say we promptly signed him out after letting them have a piece of our mind. The other patients and parents could not believe the hard time we were having. It is hard to believe that nurses and doctors could be so unknowledgable about diabetes!!! I know they may not deal with it everyday but really, peoples lives are in their hands when they come in for care and it really makes one think what has happened to some people due to such ignorance. They kept trying to talk us out of leaving saying they are concerned and if something happens it will be our fault. Unreal, we are his parents and have been dealing with his Diabetes firsthand, we know what we’re dealing with. We left, grabbed his medicine for his ears and had lunch. He was in perfect range within an hour of leaving. I think the worst part of it was that they made it seem like we didn’t know what we were doing. My God, that was the worst thing to insinuate to my wife! I’ve never her seen her get upset like that and give someone a piece of her mind that that before. I mean, well, besides me when I do something stupid that only us guys do, LOL. No one has worked harder than her to learn how to deal with his diabetes and to train everyone else that cares for him and for someone to say we weren’t putting his health in his best interest was the wrong thing to say to two parents who have struggled the last 2 years trying to learn this disease and how to care for our son plus balance work and worry about him at daycare and sleepless nites was not going to go unresponded to. We dread hm getting sick now because it may mean a trip to our local hospital if it’s not possible to get to the one of our choice. Luckily we have had only one other bad experience at the same same hospital but that is for later. It’s time to take our little man to the Pumpkin Patch. See ya later.
Have any of you had any bad experiences at your local doctors office or hospital that just makes you shake your head and wonder why they don’t understand Diabetes?
We’ve had some strange advice from different doctors over the last two years but we have a very good diabetes team so we know most of the time when to listen and when not to.
Our problem at the moment is the new school our son goes to. We are having a battle with them. They don’t want his diabetes to interfere with his school work so can any issues he has wait until the end of class. Today he had HI blood sugars and 2 + ketones and they wanted to wait until class had finished before ringing me. Like he is going to learn anything in class with sugars like that! It would be nice if diabetes didn’t interfere with our children’s life or they didnt have it at all but that is just not the case
I battled all last week to keep him out of hospital because he was sick and the school wants to know if I can do anything to get better control.
Tired from all the sleepless nights testing and the worry and now this!
Vonda, I don’t know how old your son is, or where he goes to school, but you need to get him a 504 plan ASAP! He has rights and the school is being unreasonable.
http://www.diabetes.ca/Files/KidsWithDiabetes_complete.pdf This is what we took to school when our son started JK this year we found it on the Canadaian Diabetes Assoc. website . Your son has rights and by God his school had better smarten up! Google the 504 plan or visit the American Diabetes site I think I saw it on there when I did research to get ready for my son to start school. We live in Canada and our rights and laws aren’t quite as good as the States if that’s where you live. I would meet with all school staff or every teacher your son has to explain his diabetes. Talk to your your local ADA and see if they will go in with you and help explain things. Thay are obligated to look after your son, they must look after his health while he’s in school. Here are the ADA sites I looked up what you need to know.
I had to lay down the law with my sons’ teacher, actually teachers, we were not told he had 2 different ones. They would not let him eat his snack in the library or computer room and would send him to the office. He started to complain to us as he thought he was in trouble. I told the principal that he needs to eat wherever he is and they must accomadate him, if this is not done, call me and I will come pick him up. They followed my instructions that very day as I think they know they must do it for his safety, he could be low and might not make it to the office. It is important that kids do not feel singled out because of their diabetes.
I hope this info helps and let me know if there is anything else I can help with.
http://www.childrenwithdiabetes.com/uk/ This one should help.
This link you have to scroll down a bit to find the one for Diabetes, unfortunately the link didnt take me to any info but maybe you can go from there.
I hope all this helps you. Oh yeah, I just realized your are on my wifes friends list, which is when I found out you’re from the UK. It seems like they need a wake up call there as school performance seems more important than the health of he kids, yours in particular. Don’t be afraid to make a big deal about this, call a local newspaper or TV station. It shouldn’t have to come to that but we had to go to a politician here just to get the Canadian Diabetes Assoc. to meet with our sons daycare to help us train them. That got them off their ■■■ in a hurry. The bottomline is your childs health and don’ t let them try to tell you how it has to be, they don’t rule in this case. I hope it all works out and please keep me posted.
We went though this once at my sons first school. We ended up shifting him and found a wonderful school that look after him as though he was their own son. Now he has started college and I should have known that there was going to be trouble when the school rang everyone but me to find out how to take care of my son when they heard he had diabetes.
In the end I had to ring them and arrange a meeting to discuss his care. I told them that they needed to arrange a visit by the Diabetes nurse before he started school. At the start of the six weeks holiday we had a clinic appointment and I asked the nurse if she had been contacted about a visit. She said no. I rang the school and they told me the person I wanted to talk to was away for the six week holiday leading up to start of school. They said that they would send her an email.
One week before the start of school I went in to try and speak to someone about it and got the school head. I expand the situation which she knew nothing of and she said she would get onto it. My husband then rang the school because he was starting and still nothing had been done.
We were reassured by the head first aider that he could start and they knew what they were doing. I said I was not happy with that and that I would at least like to talk to the person that was in charge of his care and explain what my son needed.
Two weeks later the diabetes nurse finally came into school to talk to them. Months before all this his previous school on many occasions had tried telling them that they would need to have plans in place and that he needed a lot of care.
Unfortunately my son then came down with a cold which meant a week off school and disrupted lessons testing for high blood sugars and ketones when needed. Two days after being back they tested him before lunch and he was 30 mmol he had his lunch insulin and nothing more and I did not get a phone call until 2:45pm telling me his blood sugars were high and he had ketones. The next day I kept him at home as I could not trust them to look after him.
I just got him back to school when he had to come home with tonsillitis. We had a really hard week with very high blood sugars and 4+ ketones. He lost a lot of weight and sick day rules went out the door as he was having up to 25 EXTRA units a day which is a huge amount for him. Even then we were struggling to get his ketone levels down and keep him out of hospital. He lost a lot of weight and we had a lot of broken night sleep.
We had a great weekend control wise and no ketones so on the Monday sent him back to school. By 10:30am he had high blood sugars and 2+ ketones. I was out in the middle of a field dog walking and said I could not get back until just after 11am and was asked if I could turn up a little latter as my son had detention for not bring his PE kit. I said no. I got back earlier than I said and was asked again if I could wait around while he did detention. I said no. Then I was asked if I could go and see head of year.
I went to see her and she started the conversation with the fact my son had only 57% attendance and what could I do better to control his diabetes. The conversion carried on in this vein and she never shifted from her stance that I could work magic and make it so my son’s condition disappear. She asked if she could ring the diabetes nurse and discuss this with her and I said go ahead she will not tell you anything different. I found out later that she had rung his old school and talked to them. They told her exactly what I had been telling her.
Son’s blood sugars were fine for the rest of the day at home and we checked him though the night and he was fine woke up and he had blood sugars of 8.9mmol. Sent him to school. At 10am got a phone call. 30.0 mmol blood sugars and 2 + ketones. He had 3 extra units and I made the bad choice of leaving him at school. As we were walking back to his class on the other side of the school, which he would have done by himself if I was not there, he tells me that when he went to see the TA who is in charge of his care about doing a blood test she told him to wait until the end of the lesson which was 1/2 hour away. He said no and she came out went with him to test. 1 1/2 hrs later I got another phone call saying they were still high and he still had ketones so I went and picked him up. I was told that the testing was disruptive to his learning and could they wait until the end of class or until break times. I told them no.
Today he still has ketones of 2+ despite all our efforts to find out why he has them (we have ruled out fatty lumps, injecting technique, and old insulin) and to reduce them with insulin.
This Friday he goes on a CGMS which he will wear for the weekend to see what is happening with his blood sugars.
We have rung the Discrimination Rights people (Can’t remember what they are called here) and we have a case number with them now.
We are keeping detailed records of conversations and problems. Hopefully the diabetes nurse will come back in and have another meeting with them.
Its all about attendance for them.
Thanks David for the websites when I have a minute I will go and have a look. Some of them I remember from the time with the first school we had trouble with. And I will go as far as calling the paper if it continues or gets worse.
Its just so much hassle when you already have more to do than the average family. Why they cant just get on with it I don’t know. Why do they think they know better and put my son in danger?
Thanks for letting me rant. Sometime I feel like no one understands and that I am all alone in this battle. I know I’m not because I have you guys here when ever I need help but sometimes if feels lonely.
No problem Vonda, I know how you feel. My orevious employer was trying to fire me because I could not work overtime on Saturdays. My wife, Tiffany works weekends so I had to care for our son. we don’t have any family members that have taken enough interest to learn how to care for him to be able to watch him so I had to call in every weekend. It was only a 5hr shift and they really didn’t care about my sons condition they just wanted me there. I knew I had the upper hand as it was turning into a Human Rights Issue and as much as they tried to intimidate me and get me mad, it worked the opposite way as they could not get to me. They eventually gave in to not disciplining, they couldn’t anyway and we signed a deal that I would not do OT on Saturday. I still had the option to file my Human Rights claim if I thought they were up to something underhanded. I could not think of anything they could be up to so I declined to follow through with it. Man, did I make a bad decision, exactly 2 weeks later they announced they were closing. The whole time they were only trying to get out of paying me 10 yrs severance pay. If they could fire me or make me mad enough to quit they would save what amounted to 12 thousand dollars. Man I wish I filed that complaint, they would have been fined a huge amount of money. They made my life miserable for over a year, that’s how long they knew they were closing. Words cannot describe the feelings I have towards these people as I view them as not being worthy of being referred to as human beings. Knowing the strees and worry I was going through with having a 2 yr old diabetic, they were only thinking of saving some money, a drop in the bucket for a multi million dollar company. I only wish I could see them on the street so I may express my true thoughts of them. I imagine you kind of feel how I felt and I understand. My wife and I both can understand what you are going through. How someone in their position can have absolutely no brains in their head to grasp what diabetes is and what it takes to try to control it. I tried to tell my employer sites they could go to to educate themselves about it and their response was they don’t need to know. Most people these days have not got a clue what diabetes is. I didn’t until my son was diagnosed 2 yrs ago this past Thanksgiving (Oct 6). My wife and I now educate ourselves as much as possible and others as well. Our city we live in has the most diabetic unaware population that we know of. We are looking to move to an area that is very proactive and knowlledgable about diabetes. There are schools 5hrs away that are diabetic aware, they entire staff know how to deal with diabetes and how to treat it. This disease is becoming more prominent in society here in Canada, but there is very little info out there to make people aware of it. Most people we talk to have no idea what diabetes can do to a person. they think you take a pill and you’re ok. Our local hospital here is a joke when we have no choice but to go there. There is a general lack of knowledge when it comes to diabetes and we are tired of it.
I know how lonely ya feel and it will get better eventually, at least that’s what people keep telling us, lol. Feel free to write us anytime if ya want to vent or just need someone to talk to.
I am in the midst of one… I think. It happened last night, this morning actually, when I got up at 1:30 to take my son’s blood glucose. A bit of background: my 18-month-old son Eric was diagnosed October 7. On October 9, one of the doctors on the pediatric ward had the hospital pharmacy draw up a bottle of diluted insulin for us to take home when we were discharged the following day, and we picked up that vial on the afternoon of the 9th. But at the time of our release on the 10th, Eric’s endocrinologist gave me the bottle that had been mixed for Eric that morning while we were still in the hospital (because it had been used only once and would otherwise have gone to waste), and that’s the bottle we continued to use for the duration, until yesterday, when we discarded it as we’d been told to do. In the two weeks since we brought Eric home, we’ve had a heck of a time getting his sugar under control–he always shoots to the moon in the afternoon no matter how much he eats or how much insulin we give him, then goes back down at night.
So to resume the story: last night, while I was downstairs in the kitchen recording Eric’s blood glucose on his chart, I remembered that the second bottle, the one ordered on the 9th, was over 2 weeks old and probably needed to be thrown out, but just to be on the safe side I got the bottle out of the refrigerator to look at the date. To my shock, on the bottle was a note that the manufacturer’s expiration date was October 10, 2008—the day we’d been released from the hospital—and a statement that the vial should be discarded on October 10. That means that the pharmacy at the hospital had used (essentially) expired insulin when they mixed the vial that had been ordered—it was good for only 24 hours from when they mixed it, and it certainly would not have carried him through the two weeks that were intended when the doc ordered it. So now I’m wondering, was the vial that my endocrinologist gave me mixed from the same batch of insulin? I can’t tell from the label on the bottle, there’s no manufacturer’s date on it at all, but it seems highly likely to me that if the pharmacy used almost-expired insulin to mix one bottle, they may have done the same thing for both–it actually seems VERY likely that they did given that both vials were mixed within a day of one another at the same pharmacy. Which means, potentially, that the insulin Eric has been getting to cover his carbs is ineffective not because of his metabolism, or anything to do with the way we’re administering it, or the timing of when we’re administering it, but because the insulin itself is no good. It would certainly explain why his sugar levels are lower at night, when he’s had a dose of Lantus but nothing to eat, but high during the day, when he’s had food coupled with (ineffective? partially effective?) shots of the short-acting insulin.
There are several issues here:
How do we find out whether the insulin we’ve been using, the bottle we got from the endo Oct 10, came from an expired batch, like the bottle we were given on Oct 9? And above all, how do we make sure that the hospital pharmacy never, ever sends stressed-out parents of a newly-diagnosed diabetic child home with insulin that isn’t going to do the job? Because I’ll tell you, it’s a good thing I discovered this now and not two weeks ago—if I’d found this error at 2 a.m. on Saturday October 11, instead of October 25, there would have been a major scene at the Medical Center in the wee hours of Saturday morning, and I’d probably be cooling my heels in a prison with assault charges pending.
I’m really, really, REALLY upset about this. Even if it turns out that the insulin we’ve been using was perfectly fine, the fact that the pharmacy staff would even CONSIDER using insulin that had less than a 24-hour time-span till it reached the manufacturer’s expiration is just so wrong, I can’t even begin to imagine what the hell they were thinking.
I would be REALLY upset about that as well. Again when you are at your weakest and don’t really need anymore to deal with stuff like this happens. I think the hospitals get away with it too much.
We have been busy with my son.
He was sick with high blood sugars that never seemed to get better. He was fitted with a CBGM for a week which basically flat lined at 22.2 mmol (that was as high as the meter went) except when he had the extra doses of insulin we were giving him to get him down. We ended up in hospital for two nights to sort it out. Turns out my son had changed his long acting insulin dose because he though it was too much and was giving himself 5u instead of 16u. We had fun with one doctor while in who wanted to give him rapid in the middle of the night because he though he was too high. Had to fight with him to reduce the dose he wanted to give. He didn’t need it. The diabetes nurse was non to happy the next morning when the doctor told her what he had done. If he had given the full amount he wanted to he would have given my son a hypo. Doctors! Some are good others need to learn to listen to the parents!
He is back at school now with another meter on for a week to check for lows now that he is taking his long acting insulin.
We are taking notes every day still and ringing the school with all problems as they crop up.
I think the school in starting to get understanding of how complicated it is and how dangerous it can be for my sons health.
Very sad when you have to move because of a lack of understanding. Lots of people here compare my son to type 2 diabetics and it is nothing like it.
I’ve not run into that before, but I can relate to how a new vial of insuling works better than one that has been in use for a while. We always have to watch our son once we start using a new vial. It seems to work too good to the point of putting him low sometimes. I will have to start checking the dates on these vials now.
Well as it turned out it was just the diluent that was expired–my son is so young, we have to use a 10% solution of the Humalog because otherwise we’d be measuring out tenths of a unit, and that’s virtually impossible. But I rousted out my endo Monday morning and he looked into it and said they could document that the insulin was fine, just the diluent was expired (and since the diluent is nothing other than sterile saline, it being expired didn’t matter). I felt a little foolish for getting so upset but at the same time, it would have been nice if someone had explained that to me.