Thank you for your help. quick update !!!
I have just got a report done by a specialist and everything that I have concerns about has just been confirmed and now my sons will being getting the correct help. Their Hba1c’s are as of 22nd of Jan 2009 are 10.1% and 11.1%.
Thank you. again for your support.
My sons blood sugars are out of control and I need some one out their to tell me what they think is wrong. Will you please see attached files which are pictures of my son’s blood sugar trends, yes I have two sons with type 1 and I know something is wrong, please tell me what you think of these results. These are the worst results I have had and their HB1s are going up every time they are tested now both boys are at 9.8 and will be tested again in two weeks. Both boys are at boarding school and these results are being ignored.
Please even just comment on whether you think these results are good or bad. I really do need your help. Thank you. Both boys are on five injections aday each.
Thank you for your comments, i have spent the last three years looking after them myself and now i have had to hand over the control to the school, who now think they know better. They eat well and do lots of exercise, both of my sons are telling me even today that they do not feel well and know that their control is incorrect.
I am pulling my hair out as the school and hospital are taking no notice of their results and telling me that everything is ok when I can see something is wrong.
Both boys have a very good understanding of diabetes and are even telling the school what is wrong but no one is taking any notice of them or me.
I have taught both boys to card count and do their own injections and this is being ignored by the school and hospital because they are only 9 and 12. When they were with me their control was much better and the HB1s were good.
My youngest son had to be woken in the middle of the night with a blood sugar of 1.2mml after being given to much correction because his reading was so high the meter could not display the figure.
I need support from the members of this website to help me convince the hospital to get them stabilized and onto insulin pumps. Which is why your comments are so valuable because you know about this and live with it everyday as do my sons.
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When I was diagnosed with diabetes at age 10, I went through an 11 year period of total denial. Although it seems I was able to keep myself in better check than your sons, as an adult I can look back at my life and understand that I was very angry about having diabetes. That said, times were very different in the 80s - doctors labeled patients as brittle, insisted upon strict no-sugar diets and had a grey outlook on the lives of their patients. All that changed for me when I found a doctor who told me that she would make diabetes fit around my life - not the other way around. Since that meeting (at age 28), I’ve lost 20 lbs, went on a pump, quit smoking, run 2 marathons, one half iron man triathlon and dozens of other races. Although my A1C is not perfect, it’s not killing me either. I have found a place of comfort living with diabetes and I think that is what you need to help your kids with. This is just a hunch, but kids are kids.
One more thing - get them on pumps as soon as they are responsible enough to handle them. Life changing.
What sort of attitude do your sons have towards the management of their diabetes? It is impossible to say why their blood glucose levels are bad just knowing they take five shots a day. How often do they test their blood glucose levels? What are they eating and on what kind of a schedule? Do they get daily physical activity or exercise?
Maybe a pump would be a great idea for them, but I agree with DBNYC- certainly not if they don’t test their blood, eat smart, exercise, etc… There is no technology, medication, or treatment that can substitute for those.
My first reaction is to doubt their compliance, as well. They are so young and may just not understand what’s required for proper care. Is there a Tudiabetes kids group? Somehow more education they could receive? Will they be home for the summer? Maybe they could be focused on further training, education and support groups for kids.
Perhaps you could check out the parents group…I’m sure there is great advice that comes from experience there. Good luck to you.
I see three possible things.
I assume they are using a pump. If so it looks like the basil needs to be corrected up. If not, they are pump candidates.
I doubt the coverage is appropriate. could be they are underestimating the carbs, or the ratio is wrong.
I would talk to the nurse at the school and see what the nurse knows. i bet they do nto talk to her much. That looks like a problem with the data to me.
Just a thought.
perhaps you should take the doctor then start figuring out how to teach everybody, your sons and the schools, how to manage their diabetes when you are not around. Or put them in a another school
Tell us more about what treatment plan they’re supposed to be on so our ideas can be focused on what is supposed to be happening. The data show no compliance with anything. Please intervene at the school. Hopefully your physician is an Endocrinologist who can take treatment in hand, and he has a CDE who can work personally with you, the nurse, and the dietitian at the school to explain therapies. If these people are not involved in putting this FIRST in your kids’ lives, they need to be. Welcome to the world of management. And best wishes to you.
Although I am really used to read graphical data like that you have provided I can not comment on the causes. There are so many factors to the equation that this seems inappropriate. But your judgement seems right: something is wrong here.
It is really disturbing that the school thinks everything is ok with their D management of your boys. This statements is worth to investigate. Who is responsible for this attitude of the school (the director, the nurse)? Based on which facts and what is their reference point to judge this as ok? Is it possible to complain to a higher board that is overseeing the schools in your district?
Both boys are very good at managment, it’s other peolpe who seems to be messing up. What do you think to putting them on a pump?
They use a background insulin morning and night then three to four fast acting after meals with carb counting. They are very good at carb counting and i always check their calculation of this and 95% of the time they are spot on. The ratios i am sure are wrong and this is what is concerning me. But i have been told that i am wrong and the boys are ok, this is rubbish and I know it. Just by looking at the figures i can see something is wrong.
Hi Rick, I think you are right!!! THESE BOYS NEED TO GO ONTO A PUMP…
When I was newly diagnosed I had very good control, but I also had good support. I was 11. When I hit my teen years and was learning to manage alone, my sugars did fluctuate alot more.
At the age your sons are at, maybe a diabetes camp during the summer would be a good idea (but only if they are into that kind of thing!). I notice youre using mmo/l, so not sure if youre in Europe or the UK. In America they have load of summer camps, not too sure about UK/Europe. It may be an idea though to help them connect with other young diabetics. When I was younger I would have loved to know more diabetics. Then again, if theyre opposed to the idea, dont force it. I went when I was 12 or so and HATED it. looking back, I just wasnt ready. If I had have gone when I was ready, I probably would have loved it.
Also, is it possible they arent getting proper support at their school? I see that theyre keeping charts but maybe it would be good to have phone meetings during the week or something. I saw somewhere that some parents do that with the school nurses.
Thanks Tracy. Have called the school from Mauritius and the UK and been told they are OK. The nurse says they are OK. When I tell them I have the metter downloads and ask what is going on, i’m told this is normal. The trouble is I can see something is wrong. And this does not look normal to me.
I have a son 13 who is on the pump. His A1C is 9.7 . He is in that rebellious puberty and hates his diabetes.
In my opinion I do not think your children is bolusing correct. How does one count carbs on a plate of readily prepared meal?
Other people always think everything is fine because high BS doesn’t always have physical symptoms especially if high BS is a trend - if they dont pass out or vomit or anything else they see them as being OK.
I only looked at one graph and I do see very high sugars. I also agree that pumping is defnitely an answer - but then they still have to bolus correctly. To get their BS right they have to test before a meal and approximatly 2 hours after (post prandial) - depending on what insulin they are using. If their BS is high then they bolused too little. To check the long acting insulin they have to test round and about 3 o clock in the morning and again upon waking- the short acting insulin should be out of the system. If BS is too high the long acting is too little. Our Dr also said that if their BS is high before their evening meal their long acting can also be too little (assuming they take their long acting in the evenings and they did not snack before testing).
This is only my humble opinion.
I really hope you will find a sollution. I’m way too scared to send my son to boarding school. It must be hard on you.
The problem is in my view they are too young to take up that responsibility and someone should help them - someone who knows the importance of good BS control.
People here who have had diabetes since childhood talk about wonderful experiences at diabetes camps. I understand that now they have them for the whole family, but either way, perhaps the boys could attend one, if the school break times coincide, get help with their ratios and routines and see how other kids handle it.
Another thought is perhaps there is a doc where you are who could speak with their school nurse…she thinks their #'s are OK and may not take your word that they are not.
Again, Good luck and keep us posted.
As your boys are in boarding school,they do need to be seen by their educator,and their endo,the school nurse has to accompany them to discuss their diabetes care at school.She has to be familial with insulin/CHO ratio,boluses and all just as your boys.I do not think a pump will be good idea now,may be in summer holiday when they can learn about it while at home.
At this age children eat what they like behind our backs.Today in my diabetes clinic the parents complained that children eat sweets at school and come home with high blood glucose.
Of course you have to demand from school to look after your children for best control,it is your right.
My boys always avoid sweets unless they know the carbs and cover it at meal times. I have spent the last three years teaching them> My boys have called me very upset asking me to sort out the school because they know it is not right and they are being ignored. Even my boys know it is wrong and the school keeps telling me everything is ok.
While it might be normal, it’s not optimal. I would see about getting your boys to a diabetes educator. I have seen an educator in addition to the endocrinologist every three months for over 18 years. Their numbers, dosages, diets, activity levels, and information from your doctors need to be discussed at length with someone who is trained to review the details to get your boys on track!!!