Diabetic child

[LisaHy]

I am keen to communicate with other parents of children with diabetes. My son, age 7, has been diagnosed (type 1) for just over a year. Sometimes the responsibility seems overwhelming. We have recently moved to the Gloucestershire area from London and have no support group here as yet. Anyone else out there?

Spidermama is your woman.She has a little boy recently diagnosed too and seems really knowledgeable on it HTH

Hi LisaHy. My ds is 6 and was diagnosed with type one last December. We're in Brighton having moved from London 4 years ago.

I know what you mean about it being overwhelming. It's never simple is it?

What insulin is your ds on? Mine's on Novomix two injections a day. We went on a fabulous family suppport weekend organised and part funded by Diabetes UK. I came away feeling like I'd done a phd in diabetes.

I've been thinking about doing one of the weekends in Cardiff. My ds was on a 3 injection routine - novomix, novorapid and levemir (I am surprised you are on only 2...) - we have just moved to 4 - levemir at night and novorapid for each meal. We got completely out of control during the hot weather and his needs are increasing all the time. He will have to inject at school in September. He's quite a difficult child to handle - quite passionate, with mood swings - the diabetes adds to the flavour! How did you first find out? - we were quite early on ie he wasn't really ill - thought he had a urine infection, plus a few other pointers (wetting the bed, sluggish). Also - other complications since - needed a cirumcision which was quite nasty - something called bxo which had been caused by numerous thrushy infections.......On the positive side we are all living a much more healthy life, and eating good healthy food (within reason, after my third glass of wine tonight!). Bye for now.

Hi lisahy.

I'm surprised to hear your ds is on levemir already and doing 4 injections a day. Will he do his own at school? How does that work?

I've been looking foward to going on this basal bolus regime since I first heard about it but our diabetic team say he's too young and it wouldn't be a good idea for him to inject at school. I kind of see their point, but at the same time it makes much more sense as a system and would keeping blood sugars level.

I can highly recommend the Diabetes UK family support weekends. Ours was brilliant. Hundreds of years worth of diabetes experience all under one roof. Non diabetics are the odd ones out almost. My ds loved it, watching people of all ages sitting down to dinner and shooting up before eating.

We have four kids. They did great workshops with the siblings too to find out how it was affecting them.

Does your ds self inject then? Mine does, but I discovered that's quite rare at his age. There were some ten and eleven year olds who still weren't doing it.

My ds's symptoms sound similar to yours. Luckily we noticed fairly early and I remember writing a thread on Mumsnet saying, 'either it's a urinary tract infection or diabetes. I hope its the former'.

It's a bit of a shock isn't it? How are you getting on with it a year down the line?

Hi Spidermama

Yes, he injects himself - he asked a couple of months ago to do it and I didn't want to miss the boat. We have to sort out how he will do it at school - probably in the teacher's desk and clip the needle off after use. Four injections a day keeps better control for us.

Where does your ds come in the family? And how does it affect your other kids. Sweets have been the real problem for us - it's hard for 6/7 yr olds not to have them - I know they say you can have what you want, but it doesn't really work like that does it? And I think you are in danger of giving mixed messages.

Pressure to get off the computer - Runscape beckons....speak soon

PS Where in London did you live? We were in Ealing, but love where we are now.

Hi lisaHy,
We were all over South London then settled in Brixton for 5 years before moving to Brighton. Very good move. We love it here.

DS is second of four kids.

We've never been big on sweets but I let him have pretty much what the other kids have a parties and the like. Today he had candy floss for the first time ever because they have all been asking to try it for over a year.

I'm happy to treat the highs with novorapid if necessary and I think it stops him feeling hard done by and possibly rebelling.

He often comes home from parties and puts the lollies and sweets from his party bag into his hypo drawer where we keep all his bits and pieces. He does this of his own accord which is heart rending because he used to wolf the lot down.

I'm very impressed that you're on the four jabs a day already. I'd be interested to hear how they deal with it at school (your ds and the school).

Hi Spidermama
Just got back from visiting old friends in London. We are back to school on Monday, but I am apprehensive about the injections at lunchtime - I'll let you know how it goes. Had a very supportive talk with his headteacher yesterday. I will go in Monday lunchtime and talk it through with his teacher. Luckily the school is very small (100 kids) so it is very friendly and approachable.
Have promised ds a ps2 game if he manages it all sensibly for the next two weeks (he is the sort of child that bribes work very well with).
Incidentally do you know about disability living allowance? It's a bit of a pain applying for it but well worth it, even if you decide to save it for them for the future.
Speak soon.

Hello LisaHy,
Yes we've done the DLA forms. Thanks.
My ds is adamant he doesn't want to do injections at school atm so we're sticking with the two injections a day method. Not ideal but one step at a time.
Good luck to yours at school. Let me know how he gets on. Will he go to a medical room to do the injection do you think?
I can imagine the potential for parental hysteria when other kids go home and tell there parents a boy at school is let loose with an injecting needle. I've been told by other parents of diabetics (at the Diabetes UK family support weekend) that there's sometimes a fair bit of ignorance and fear to deal with from others.
It's good your son is at a small, supportive school. I bet you're relieved to be out of Ealing.

Hi LisaHY

I have been a type 1 diabetic from the age of 3 - I am now 34 - and just thought i may be able to give you some help with understanding the disease from the child's perspective - obviously you may absolutely not need this, but i'm here if you do...

Thanks jacksma - I have a very close relationship with my ds2 - I resent that the diabetes is spoiling it to a degree, because I know he takes his frustration out on me since I'm the one who does most of the "nagging" and care for him. Did you feel resentment towards your Mum? Where your teens a nightmare? When did you finally take complete control? It will be so scary when he leaves home - a long way off I know. Where you worried about passing it on to your children? What was high school like? Lots of questions!!!

I have a very close relationship with my mum partly to do with having had diabetes I think - there can be a tendency for children to become overly dependant on their parents rather than distant. Most of my resentment was/is focused on doctors as it can be a struggle, especially as an adult to get people to listen to you or any consistency of care, which can be frustrating. Teenage years were hard - I believe that it is often not as bad for boys physically but I think the psychological wish to not be diabetic is very real plus you are beginning to make your own choices and often the one's you make are not great ones! School was also tricky as my school refused to address themselves to the problem and basically left me to sink or swim - not all schools are like this however and other people I know had more positive experiences. I started to take proper control of my diabetes during my pregnancy and have continued to look after myself since then (I now have a reason to do so I guess)but prior to that I think I had been very slack for 15-20 years, though I did always take my insulin and attend clinics. I do now have some complications, though they are minor and do not impact on my quality of life at all. The truth is that the real issues re complications tend to present themselves amongst type 2 diabetics - they now know so much more about type one and things are muchj easier control wise than they were (do you know about DAFNE for example - dose adjustment for normal eating. It is perfect for someone on his insulin regime but perhaps not for someone so young - it does allow for eating what you want when you want and gives much more control). In terms of passing the disease on, no I had no worries - type one (I am sure you know this) is an auto immune disease and has no genetic profile, unlike type 2, so the risk of any of my kids having it are not increased by my having it.

Oh, sorry - I realise now what you meant by complete control...I suppose in the end it was when I left home - as long as you live with your mum/carer I think you are not in complete control, also I have always had problems with hypos and have always requied help with those, particularly at night. But in terms of taking control in terms of managing my own testing, insulin and clinic attendance IO suppose I was thirteen/ fourteen which also coincided with when I started to have a life without my parents where I was forced to make my own decisions. I always wanted to be independent but I think the reality is diabetes limits you in that way as you do get ill and you do, ultimately keep on needing your mum!!

Hi jacksma,
Very interesting to hear. I wonder, can you rememeber when you were diagnosed? I don't suppose you remember life before diabetes. Did you ever go on the trips and family support weekends? Do you worry about complications?

My son was diagnosed when he was five, nearly six, last Christmas eve'. It takes away a great deal of sponteneity from family life. He worries about world stocks of insulin and if they'll be sufficient for him.

He was self injecting after the first month and is really keen to understand it. He's not interested in basal bolus because he doesn't want to inject at school which means he tends to have a very high reading late afternoon.

Hi Spidermama

I was diagnosed when I was three and really remember very little about it though I remember being very ill that summer and I remember being in hospital. The only thing I remember about before was my grandmother used to buy me jelly tots, which had to end. The insulins were mixed then and there was no flexibility in terms of dose adjustment or eating times.

That is interesting that he doesn't want to use a basal/bolus regime - does he want to avoid injecting at school to avoid feeling different from the other kids?

I once went on a diabetic camp, which was not successful as I was just too young and desperately missed home (I'd never been away alone before, I think I was 6) but one of the diabetic nurses at my hospital volunteers on them and says they have just got so much better. Certainly my recent experience is that knowing other diabetics is very useful as it is a tricky world with diabetes and feeling there are others who share some of th same issues is helpful. When I was a kid though I just wanted to feel separate from other diabetics and the same as my mates.

I am so sorry that your ds worries about stocks of insulin running out - that is just heartbreaking - I think it s a lot to get your head around. I used to have worries about people poisoning me which I think was a similar sort of objectifying more subtle anxieties about my health, which were hard to deal with when I was that young. You can tell him though that thirty years ago there was no blood testing, only pork and bulls insulin and glass syringes which worked in big metal triggers and that now everything is so much better and gets better all the time so it may be that when he is older he won't need insulin (I'm sure you tell this all this anyway)

Yes I worry about complications. I have early stages of diabetic nephopathy and some retinopathy though both of these are getting less worse now that I am serious about my control. When I was told about these I panicked as these are the fears I had carried for, by then, 29 years but in fact my quality of life is in no way impacted and I just have to work at looking after myself in order not to get worse. The reality is that complications are mostly an issue for type 2s these days for all the obvious reasons of late diagnosis and people who are older finding it very hard to change their lifetime habits. I abused my self badly for a long time (not that I advise this) by failing to look after myself properly and have really got away quite lightly, but of course it worries me. I think it is a shadow for all diabetics.

Sponteneity will come back when it becomes second nature - I promise

Thanks Jacksma. I'm sorry your camp experience wasn't so good. I've heard terrific reports from others about the camps. Perhaps 6 is a bit young.

It's interesting that you wanted to blend in as a kid and weren't interested in hanging out with other diabetics. It makes sense. I sometimes say, 'Oooh look ds, here's my friend C. She's a diabetic you know.' Or 'There's olympic rower Steve Redgrave ... etc' and I wonder why he glazes over or changes the subject.

He doesn't want to inject at school because he doesn't want to stand out. Anyway the local diabetic team are very reluctant to put someone so young on a basal/bolus routine. It seems to be different depending where you are.

I loved the family support weekend organised by Diabetes UK. There were so many people with diabetes at all different stages, with differnt experiences and advice. I came away feeling supported and armed with information, strategies and choices.

Thanks for your response.

Jacksma can I ask ... if you wanted to give the mother of a diabetic child one piece of advice what would it be?

What worked for you and what didn't?

I am going to think properly about that one - I am not sure whether I can give you that kind of advice - I can think of lots I might say to your son but I will ask my mum what her advice would be - she, I think, had quite a hard time all in all...

I will get back to you tomorrow.

Hi there - it's interesting what you (jacksma) said about cause of diabetes (autoimmune disease) - I've heard / read several different theories - the formal NHS line I have been given is that is an auto-immune condition, but that you have to have the genetic disposition (my terminology may be wrong, but you get the idea).
My husband's sister developed type 1 at age 11 - incidentally she has hidden it most of her life, and had a breakdown in her late teens - she was even refused jobs because of her condition which made her secrecy all the more important in her view - my ds developing has been liberating for her and she is completely open and supportive with him - so we kind of thought there was a genetic link. I have a friend in London whose husband developed in his early 40s and then their son at age 9 - they were told a 1 in 10 chance for children of fathers with type 1.
Not trying to challenge or scare you jacksma, but different people (especially health officials) tell you different things - I think no one really knows (?) What have you been told Spidermama?
Incidentally congratulations on being a mother jacksma - that's a real achievement that probably most people are not aware of - my SIL couldn't have kids (not just because of the diabetes, but this was a complication and IVF was a nightmare for her - she has since adopted 3 lovely girls)

Hi lisaHy and jacksma. I've been told there's a genetic element but an auto immune trigger. I find myself wondering about lactose intolerance being a contributing factor to the onset of my ds's condition. He spent the first three years of his life with immune overload (lots of snot and sneezing) and it took me years to work out he was intolerant to dairy. Though he'd been off the dairy for about a year before the onset so, who knows?

I also heard it happens in clusters, which is odd.

The truth is they don't know. But my Grandmother had type one and so did an aunt of my dh.

If there were a genetic link it would mean there had to be that genetic profile in all cases - there rarely are with type 1 - for example at St thomas' hospital (which is a leading one in diabetology) only 1 in 30 of the type 1 diabetics they treat have a history in their family - noone in my family has it or has had it in living memory, I think to be honest it is just very bad luck - and you are right they have no idea (as with all auto immune diseases) why the body behaves in that way, there may be a prediposition due to genetics or may not - I have been told categorically by the leading expert in diabetes and pregnancy the world (I am very lucky to be in the nhs trust I am in)that the risk of my offspring having it being raised by my condition is not scientifically robust and that there is little evidence therein - there are other - hideous risks but they do not effect diabetic fathers (ie they are due to gestation and diabetes). The thing is also - you will hear many different things re diabetes and from diffreent doctors and loads of it will be rubbish, whihc is frustrating - I have been told things over the years which I have later found out to be untrue and have been very frustrated by this - my advice is always try to get info from consultants the registrars know nothing !!!(I did say I had dr resentment )

Having talked to my mother and thought about it myself I don't think there is really one piece of advice that is really useful to give - each stage of growing up brings a range of problems I think. My mother said the one thing to keep in mind is that no matter how difficult things get (and there is no point in lying - it will be difficult) and how upset your child gets, it is essential not to show them that you are upset by it, and I think that is probably true. Living with diabetes requires you, in many ways, to be armed for many fights. There will be many times, as you said was the case for your sons aunt spidermama, when you just don't get as easy a road as a non diabetic may get. The biggest difficulty I find is the fact that because people only really hear about type 2 it is a battle for people to realise that the two types are different and that type 1 is not brought on through beig overweight and it isn't as simple as taking some insulin. There is a sad truth that because it is an invisible illness it is often an uphill struggle to manage in school or at work but then it is also true that people definitely do manage (you mentioned steve redgrave - there is also halle berry and many others) to get on fine, and though it has thrown up difficulties I have two degrees (one of which I got first class honours in)a successful career - though now not working due to ds - and a happy life at home with a lovely dp. I had a wild time as a teenager and in my twenties and have never felt that my life has been massively held back by the condition - just that some things have been harder to get to acheive.

Having a child has been a major achievement and the pregnancy was hellish but then one of the things about having been through some major ups and downs with this very, at times, annoying disease is that you become very stoical, which is not a bad thing in life I don't think.

Good god, how long is this and how bored must you be - sorry...

Not at all boring jacksma. Quite the contrary. I find this fascinating. I want to do the best I can for my son and I love hearing about successful adults who've had type 1 since they were very young as it fills me with hope.

It's interesting you mention the stoicism. Halle Berry has mentioned this in similar terms.

I also totally agree about the type 1 and 2 thing. Only today they were talking about diabetes on This Morning. The broadcast the whole item talking about diabetes and the incidence of it rising and how you have to control it with diet and possibly insulin pills without once mentioning that they were talking about type 2 which is a completely different ball game.

Thanks for your posts jacksma.

I agree - not boring at all - thanks for your input jacksma. I saw the "This Morning" item as well. I really wish that the two types had completely different names. We got several comments from people after my son was diagnosed eg "been eating too many sweets then", and one nurse told me it must have been the diet he had been on (unbelievable!)

Incidentally, Spidermama, my ds has been doing great at school with his injection - his teacher is very relaxed and interested to learn. He is staying in the class when everyone goes to line up for lunch and carrying out his test and injection while just he and the teacher are in the room (she keeps all the stuff in her drawer and he brings it home each day). They then make sure he gets to the front of the queue to eat straight away - his brother helps on Friday when he has a cooked lunch to make sure he gets his quickly. He has made a few comments about being "the freakiest kid at school" which is hard to take, but I can't take away the diabetes - he has to come to terms with it, difficult as that is at 7.

LisaHy that's really great that he's doing fine with injections at school. I'm inspired. I know what you mean about the freaky label, but as jacksma says it also has positive benefits.

Also the feeling of hating to be different leaves you at some stage in your teens and then there is some cache in being hard enough to use needles/pen...

Anyone heard from rabbitrabbit? Just picked up that thread. Sorry I haven't been around for a while - I have also recently started back at work - sorry I haven't been in touch. We are having a REALLY good run at the moment - ds2 has had very good blood sugars for the past few weeks - it's probably because he's stopped growing or something and it'll probably all go out of the window over Christmas. The 4 injection routine works very well and we recently found out about the pens which do half units which I find useful. Feeling a bit more relaxed about Christmas this year.