writing, our family, and type 1 diabetes
This page is in response to a number of folks who congregated on the ‘About’ page: so here is a more official place to talk. About diabetes, about being a parent, about being a parent of a teen, about being a parent of a teen with type 1 diabetes. Or about just being.
No threads. No focus. No joining. Let’s see what happens. A place to talk.
In November 2008 my 12 year old son was diagnosed with type 1 diabetes. The effect of this event on me -- and on our nuclear family -- was like being thrown overboard and watching the ship leave.
'Dealing with type 1' in the family has morphed into another sort of 'dealing' -- a wholesale resituating of parenting, of family dynamics...of life.
At my son's diagnosis I could not to locate a record of what living with a type 1 child in the family is like. I could not see myself or our family anywhere. I longed for a starting point, a resource and a sense of the future. Being a writer, my instinct is to write it. This space, I hope, is a start.
<4 mmols = low or hypo, life-threatening if untreated
4-8 mmols = within target range
8-13 mmols = high but not usually dangerous
14+ mmols = very high, or hyper, life-threatening if untreated
Waving and Drowning
23 comments
Comments feed for this article
July 9, 2010 at 2:13 pm
Louise
I love reading your blog. It always humbles me and reminds me we are not alone.
January 5, 2011 at 5:19 pm
Angela
Hi, my youngest son was diagnosed age 9 in Oct 2009. I felt winded, overwhelmed, sad and relieved that it was ‘only diabetes’ – my suspicion was far darker. No-one could tell me why him. We adjusted our lives to our new inclusion and went with it.
In Nov 2010, my elder son was diagnosed aged 14. It has been perhaps more difficult to accept. And still no-one will answer my questions about why?
The day to day life is okay and our medical support is good, very good. Does anyone have any ideas/theories about why their children may have become suseptable to diabetes? I am not looking for a definitive answer. I am curious by nature and as a mother of four, I have half of my children relying on medicine and technology to stay alive.
In the early stages of diagnosis I became so busy learning our new routines and worrying about my kids and adjusting and supporting and all the while I have had these underlying questions that don’t really fit into clinic visits, BG update phone calls etc.
July 9, 2010 at 8:43 pm
Patricia Debney
Thank you very much Louise. Thank goodness we are not alone. Indeed.
xxoo
July 13, 2010 at 7:32 am
Nah! « Waving and Drowning
[…] A Place to Talk […]
July 13, 2010 at 8:48 pm
Jane (T's mum)
Hello Patricia
Your willingness to share all your highs and lows (and normals!) is so appreciated and comforting. Thank you.
July 14, 2010 at 11:38 am
Patricia Debney
Thanks Jane — every little helps, I think. I’m really not sure how else to get through all this other than by ‘sharing’. I never thought I’d say that — not typical of the rest of my life! — but for this, it’s true.
Hope all is well with you and yours.
xxoo
July 21, 2010 at 3:38 am
tam
good idea patricia…i love it because i am yer mum and i know many embarrassing things about you. you know many more similar things about me, so i guess we’d best call a truce…
e is looking good these days, at least per photo, a more handsome lad there is not. hard to imagine how much heartbreaking labor it must take to keep the kid healthy.
i love you all,
tam
August 19, 2010 at 3:21 pm
Patricia Debney
Thanks tam. xxoo
April 11, 2011 at 12:58 pm
tamsindonner
what a strange post mine is. must have been asleep. tam
October 26, 2010 at 12:36 pm
Mandy Delaney
Hi, not sure where to start! I’ve never really got involved with ‘chat-room’ style things before, but this one is particularly close to my heart as the mother of an 18 year old diabetic. It is nice to know that we’re not alone. Love to all, Mandy. x
November 23, 2010 at 6:21 pm
Chris
I have just finished reading your article in Balance. My husband has recently gone on a pump – he is a rower, swimmer, we also canadian canoe, climb the odd mountain etc in other words do exercise. Can I suggest that you take a look at http://www.insulincase.com/%2FAquapac-WaterProof-Insulin-Pump-Case-P608.aspx it’s brilliant. Imperial College London have tested it too. Also look at the web-site “run sweet” I don’t have the link but just google it. Hope this will ease your worries a little bit.
December 3, 2010 at 6:07 pm
Linda S
Patricia, hoping all is well with you and E. No news is good news right?
January 7, 2011 at 12:05 pm
Patricia Debney
Hello everyone
I’m just about to post again — but just to say that everything is really pretty fine: just TOTALLY MAD busy. The end of last term was one of those awful, head down, barrel through times.
I’ve missed posted terribly, and am so glad to see everyone still here, and a couple of new besides.
Mandy: welcome! Always good to see new people. I will now set about doing my best to keep up with myself and others! Other good sites for you might be http://www.diabetessupport.co.uk and T1 Friends on Facebook. There is also a dedicated email list under Children with Diabetes UK — just google it and you will find it. There are so many, many parents out there dealing with so much — from growing kids to teens — and so many people in general dealing with T1… lots of support and thoughts. Go for it.
Chris: many thanks for your input re the pump bag. Yes, I’ve heard of this, and just never thought to get it — somehow I thought he’d always have the pump off when around water. Duh. But I think now I’m going to get one regardless… E surprises me sometimes!
Linda: you are very very sweet for enquiring. Yes we are and have been okay. I heard from several people over the last two months, and each time I do think, yes, this is a community. For which I am grateful. Thank you.
Angela: I’m so sorry to hear of your recent blow. It really is one of my main fears — another child in the family developing diabetes. I think it would hit me harder the second time too, I really do.
Reasons: well, I think it’s clear that there is a genetic predisposition, even if a buried one. Most people diagnosed with T1 don’t have a close relative with the condition, BUT sometimes there is a distant relative who had or has it. In our case my husband’s father’s uncle had T1. Who knows if this is the buried gene, but it might be. The other part of the puzzle also seems to be that T1 is ‘triggered’ somehow by illness: this is why all that fuss was made last year (?) about the discovery of the stomach virus that seemed to trigger T1. Unfortunately this virus is part of a large family of viruses, and not all of them seem to trigger. And too, it does not seem to be the only trigger. But many people do develop T1 after a flu-like illness or stomach bug; this much is clear. Something seems to happen that sends the pancreas over the tipping point…
Actually, writing this has made me think it would be a good topic for a post. So here I go! Thank you Angela.
Take care everyone.
xxoo p
January 7, 2011 at 12:46 pm
Resolutions « Waving and Drowning
[…] I’ve been away, some folks have carried on an intermittent reflection over on A Place to Talk. And one question that’s come up from Angela is what people think ‘triggered’ or […]
April 10, 2011 at 10:31 pm
tamsindonner
hmmm, patricia,
re: enterovirus as a possible precipitant of T1. polio is, itself, ‘only’ an enterovirus,sometimes breaks as undetectable, no damage, all the way up to respiratory failure and death, very rapidly. i wonder what happens for a belly virus, normally so benign, to devastate the body like this? IIRC, T1 is also an immune system malfunction? maybe i don’t remember correctly…
i recall how sick E was with that virus, certainly an extreme case, but not all that rare. same when kids used to get polio: 3 days of yucky sick then out to play, then 40 years later, here comes the rest of it (postpolio, which i have).SOMEBODY needs to figure this out. there are vaccines for all sorts of diseases but they usually don’t mutate as fast as do enteroviridae.
from my purple wheelchair, where i ponder great questions of daggone prevention. no one should have to relinquish so much of his/her life to the sequelae of a dang belly virus.
for polio, surgery, injury, many other things can precipitate postpolio. anyone know what else may be connected to onset of T1 besides severe viral infection and possible genetic factors? i think the genetic factors are so distant as to be statistically sorta unfounded. but what do i know? hardly anything.
tam
former mad scientist
current wheelchair racer
September 23, 2011 at 10:29 pm
Vik Bennett
Hi there – when I look back at pictures of Django last year, i can see he was too thin and translucent, with purple eyes. In the April he had a short lived vomiting episode, the only time in his life he has thrown up so far. Then the pictures start looking different. And his behaviour and personality began to change. Then in late June, he suddenly became incredibly tired, went to bed, breastfed and slept for 3 days and had a fever over 40. We were abroad and after the 3 days, the fever came down enough to travel. After that, he became incredibly anxious, very tired, or very manic, and then, then started the excessive eating, drinking, weeing etc, then became constipated and finally couldn’t even get up the stairs, and couldn’t breathe (severe DKA). On August 26 he was diagnosed and hospitalised. In my mind it went in two phases. April, stomach bug, pancreas begins to fail. June, fever, pancreas starts to quit. august, all packs up. About 5mths. The nearest genetic is my grandmother with t1, died young from complications. The hardest thing is when Django tells his Redford that he got sick but no one knows why. For a three year old trying to make sense of the world, this is hard to work out. The “but why?” question keeps looping and looping…
November 7, 2011 at 12:38 pm
Lucy Rymill
Hi Patricia,
I read your article in Balance Magazine and wondered whether you lived in East Kent? I live down the road from the university and was interested to read about your experience of you local health care and why you decided to go to Cambridge instead. I’ve felt particularly disappointed with the healthcare my daughter has received so far and wondered whether you had been through something similar. Many thanks!
Lucy
November 7, 2011 at 3:59 pm
Patricia Debney
Hello Vik and Lucy
Vik, I’m sorry to miss this message. Sigh. The stomach bug thing is common, but it just feels so… avoidable. Of course it’s not. And who’s to understand? I do know that my daughter recently has had a bug: and I was struck with fear. What if, what if? It’s a terrible cycle. Thanks for sharing your story. I’m sorry you had a such a dreadful time. Utterly terrifying.
Lucy, yes we live in East Kent, also just down the hill from the university! We went to Cambridge initially because they were running a trial there for newly diagnosed kids, to try to preserve beta cells. The only way we could find out about the trial was to be taken on by the clinic, which we were keen to do. In the end E didn’t opt for the trial, but as a consequence we had the opportunity to go for ‘shared care’, which has been a huge blessing. E was on the pump within 7 months. Kent does have great funding for a pump (I think still does?), but it’s the lack of staff and training that slows things down. I have much more to say about stuff locally, but won’t in a public way. It’s not fair and the local system is a tough one to battle through for everyone, health professionals included I suspect.
Maybe contact me through ‘contact’? I’m happy to talk about this, especially as you are local. Many local people I know go to UCL, also a wonderful centre. Quality care makes the most incredible difference. Othewise, it’s such a lonely business, and so relentless. (Well, it’s lonely and relentless anyway; but good care makes it bearable I think.)
With warm wishes,
Patricia
November 8, 2011 at 9:50 pm
Harriet
Dear Patricia
I also follow you closely in Balance and was very interested to hear that your son attends a clinic at Addenbrookes in Cambridge and not in Canterbury.
Just to let you know a little about myself – I have had Type 1 for 45 years, but far more importantly I have a daughter at University of Kent who has had Type 1 for 12 years and after many years of trials and tribulations, including her being diagnosed as epileptic because of hypo seizures (!!), she now uses a pump reasonably successfully.
However we have been struggling as Kent uni and Canterbury PCT will not take her on as a temporary resident – funding implications here we believe as pumps are expensive to maintain.
The DSN at the uni practice is very good I gather, but cannot give much time to her due to her not being registered – our daughter has to be given ‘special’ appointments.
As our daughter spends the majority of her year at home she does not want to change her primary care to Canterbury especially as she can certainly confirm that Canterbury is a ‘diabetes blackhole’, she described the service at Canterbury Hospital as ‘one man and his dog’, the dog being more knowledgeable about diabetes than the consultant!
Consequently she travels back to Oxford for her clinic appointments and between her uni commitments and clinics that are always changing appointment dates I am sure you can imagine these are few and far between! This is quite worrying for us as parents as you can imagine. This year she even had to go to Superdrug in Canterbury to get her flu jab as the uni practice would not supply it!
I confess I am using you to offload as I am sure you can imagine this situation is not good and as a kindred mother of a diabetic I am sure (hope!) you may understand! I realise this is a very close to home for you and I do not need or expect you to respond just thank you for listening!
I have signed up to your blog and look forward to hearing more from you in the future. Also very, very much hope for consistent diabetes care across the UK in the near future especially in the County of Kent!
Thanks again!
Harriet
November 9, 2011 at 1:45 pm
Patricia Debney
Hello Harriet
Thanks for getting in touch. I’m sorry your daughter is having such a rough time; good grief.
The care that’s available in this area is not through Canterbury hospital anyway; our shared care arrangement is through William Harvey Hospital in Ashford, where they have the Paula Carr Centre, which I think serves both adults and children. We have never been to the hospital in Canterbury for any care, though we do attend clinics there arranged by the Ashford hospital. As I say, we have ‘shared care’. In reality, all of our practical care comes via Addenbrookes, but we do think it’s important that the local team know ‘the score’ in case we need them.
I’m surprised that facilities aren’t available on campus for your daughter. Is she registered with the DDSS (Disability and Dyslexia Support Service) on campus? Hmmm… This needs addressing if she is and still not receiving medical support (like flu jabs!).
I confess I fully expect my son to return to his main clinic wherever he ends up at uni — but the knowledge still needs to be there, in order to keep him safe, indeed. Worrying.
By the way, I don’t think pump maintenance is at all expensive. Insulin is insulin, and there are no needles, just sets and reservoirs… Hmm…
Would you daughter be willing to come see me? Some of my campus job is actually as academic support officer, and some of that is pastoral. If there’s a problem with how T1 is being dealt with on campus, I’m in the position to try to do something about it.
Keep in touch!
p
November 10, 2011 at 7:59 pm
Harriet
Hello Patricia
Thank you so much for getting back to me.
Yes she is registered with the DDSS at Kent and I must say that the care and support give by the uni has been exemplary and has not been a problem. She has always felt that she will be listened to and help given which is always so important – consequently she is doing very well in her studies and really likes the university.
It seems it is the medical centre that is not willing to take her on as a ‘temporary’ patient and I have to admit I have found this very perplexing and worrying as I, like you, understood that this should not be a problem and they should take anybody temporarily. It may be that she has misunderstood the situation, but as she is now very much an adult it is difficult to ‘interfere’! I fully admit I find this quite difficult after many years of ‘interfering’ on my part!
She saw a doctor at Canterbury Hospital after a series of ketoacidosis episodes when she first went to Kent, it appears he was very unsympathetic and this has obviously put her off. It was after these episodes that she got a pump here in Oxford which has made a huge difference to her life and has had no more ketone episodes except for one this summer when she had a bent cannula that went undetected and caused ketones and hospitalisation surprisingly quickly.
It is very kind of you indeed to offer to help and thank you, however I feel that she will be very cross if she knew I had contacted you! My main beef about this is the seeming inequality of diabetes care throughout the UK.
Thank you again.
Harriet
August 26, 2012 at 9:41 pm
Jass
“from 10 to 24 mmols in 3 hours”??? That’s the wave and before you drown, do understand that a low carb diet would reduce such swings – Take a looksie at http://en.wikipedia.org/wiki/Richard_K._Bernstein
His book is a life saver for Diabetics – 24mmols is sky high and bound to take you into complications
October 29, 2012 at 8:15 pm
Julia Watton
Hi Patricia,
Been meaning to come on here now for a long time but something stopped me I guess, but these days I am feeling a little stronger…
My son was diagnosed June 2008 at 10 years old,my husband also has type 1. I was completely devastated but didn’t show it…I have spent the last year finally confronting Diabetes and some of your words have helped me through,it is a ‘grief’ the loss of the care free days your child once had.
I am not sure if any one has read about ‘chronic sorrow’ but I know that I have felt this, it helped me understand that how we feel as parents is a normal response to an abnormal situation.
As I’ve said the last year has been a turning point although still hard and for instance reading through this tonight again the tears fall but on the whole life is good.
I have two pumpers in the house!! so all the blogs above sound very familiar.But I know that as Parents and Children we can all manage the mechanics its the emotional side that gets you every time!
Just wanted to thank you from one Mum to another ..we both appear to have very incredible boys.
Julia x