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

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Replies to This Discussion

Woolly, reading this truly breaks my heart. I believe that a huge part of suffering with type I diabetes is the lack of education for those who attempt to educate us. How can they change things and coach us when they have no idea what it is like. I truly love and appreciate everyone on this site so forgive me if I come across pushy or cocky, but i think more than sympathy, you and Benedict need real help and progress. I have had diabetes for 24 years since I was about twelve and had many complications and also a 36 year old father of 3. I have recently reached out and worked with a few people to help them get better control and really understand diabetes as a whole life thing and not carbs and basal and bolus, etc. If you are interested, I would love to try and help Benedict get a life back and you as well. There really are ways to do this with baby steps. If you aren't interested I will take no offense and hope for the best. However, if you would like to talk some more about things, message me and we can communicate out of this thread. All my thoughts to Benedict!

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