My 19 year old son just been diagnosed with type 1 :(

[louby]

Hi Misty, good to hear from you again and yes still following this post, seem to be grasping at everything at the moment. It is good to hear from another parent who knows exactly how I feel, it has been an emotional week for us all, myself especially although in private as not to freak my son out. We are slowly coming to terms with this situation as basically realise we have no choice. My son has been through a few emotions this week,ups and downs, but is becoming more settled and confident with the situation now and is back to work on Monday, (a great weeks annual leave!).
It was a massive relief to hear from the Diabetes Nurse who I must say is brilliant, and has even given us her personal mobile number. Disappointing was the nurse at the GP practice, who only after 3 days of being diagnosed told him of the possibilities of him dying in the night from a hypo, not exactly what we needed to hear so early, especially as his sugars are still high at present. Will be giving her a miss in future. Luckily I work in health-care myself and have contacts with health professionals if we get really confused, the dietitian where I work has been great too. We also have a diabetes nurse consultant who pops in once a month so I will be sapping her of all information too.
Its great to hear it hasn't really altered your sons life too much and he isn't finding it a problem with injecting etc. Thanks for the advise re the cereal bar and dextrose tablets, we know have them stashed in many places, although at present his sugar readings are all over the place still. He does however notice a massive difference when exercising when they then become within normal limits.

I have also researched this "honeymoon period" it just seems so sad though that the beta cells get destroyed by the immune system. But I suppose at least we know this, and dont have false hope thinking the pancreas will be working again.I expect we will know when this honeymoon period is over due to the sugar levels creeping back up, is that how they know?

My son was due to run a half marathon today with his mates, raising money for cancer reasearch , I did feel rather sad that he only was able to spectate, whilst his mates where running. The nurse advised him not to do this run, although future wise the sky will be his limit, just when things under more control.
I have been active in raising money for kidney research as I work in renal, but now my focus will have to be diabetes and considering doing the bridges walk in London in November to raise money diabetes research. Think we will gather a large group to go, as my son is keen too. Trying to do something positive with all this.

One thing bugging me is the prescriptions, as we are new to all this, he only got 50 test trips for his BM machine, which will only last 12 days so already having to order some more, can u request extra as cant keep ordering every few days for them, how many do you get? Obviously in time he will test less frequent and 50 will last longer but we were down to the last strip the other day and freaked me a bit.
I have been on various websites and ordered information leaflets etc, to gain more knowledge of diabetes, although sometimes reading the scary bits gets you down. Working in renal some of the patients are actually on dialysis due to their diabetes damaging their kidneys,which as we all know kidney function can be affected by this disease, so that can be slightly depressing at times. But thinking positively and compliance I believe is the key to remaining healthy. When my son said to me his life was ruined it nearly crushed me in two, but my reply to him was, "there are people far worse off then yourself, you have a condition which if you comply with you will lead a normal life, if not yes there are risks", just trying to keep him a bit upbeat and let him feel sorry for himself too much. He is young and hopefully like Jack will adjust and accept.
Thank you so much for your reply. please keep in touch, it makes me feel like i am not on my own with this.
Regards x

 

[sw11bloke]

Hi Louby

I was the same age as your son when I was diagnosed. Its never easy and it will take him some time to adjust. The worst for me was when people and my parents kept telling me what to do and what I can and cannot eat. Have you taken your insulin? What was your blood sugar? etc etc

My best advice is to get your son on a DAFNE course ASAP. You could attend with him as it would give you an insight into the new ways of dealing with diabetes. DAFNE is a course that teaches you to take control and its all about dose adjusting for normal eating and how to fine tune your background insulin. It teaches you about foods, carbohydrate counting and so forth.
DAFNE was the best thing that I ever did.

2. As your specialist about a new insulin called Degludec. Its peakless and you take 1 shot which lasts 40 hours. It may be easier to start off with. I also found that my hypo's on degludec were less severe. I tried all the different basal or background insulins and Degludec gave me the best control ever.

3. Look at the Omnipod insulin pump as an option of treatment. I have just started using this. Its basically an insulin patch....no wires or tubes. I love mine and its making a huge impact on my treatment.

 

[Misty1]

Good morning Louby, and hello SW11 bloke. Thanks for your comments about DAFNE and Omnipod. We've been looking at both - DAFNE sounds really useful, will try to get a place. The Omnipod looks really practical, there are quite a few videos on UTube posted by Omnipod users, mostly positive, so I hope you get on well with yous SW11bloke. I also saw a 'diaband' advertised which is like a stretchy band which goes over your arm and holds the pod secure during exercise. We are sticking with injections for now, as it's working, but will keeep the Omnipod in mind should levels become trickier to control.
About the test strips, Louby, I haven't felt limited - I have a repeat prescription and can order double quantities, so I have a kitchen cupboard with pretty good stocks and top up each month.
Your son sounds very sporty, which is ideal. I spoke with a teenage boy who is 18 months in with T1 and he said he feels he is healthier because of it, and sees his friends filling their bodies with junk food/alcohol, so that's a positive hey?! I also remember Jack's comment in hospital at diagnosis - wouldn't it be awful to bring your child in if they had something really bad. so I guess we are thankful and stay positive. Always look on the bright side, hey!
Best wishes to you both

 

[Misty1]

Just a thought - have you found the JDRF website - Juvenile Diabetes Research Foundation

 

[louby]

Hi Misty1 and Sw11bloke, thanks both for all your comments and communication. Is a huge help to us both. We will look at the various options you have mentioned. Thanks esp to sw11bloke for your comments regarding how annoying it is about parents asking all the time, I am trying not to do this, as I am sure my son will soon get sick of it, and realise he will have to manage this himself. The daphne course sounds brilliant i have read up on this and also our DN spoke about it and has put his name forward. I think this will be so beneficial to us both. My son is certainly eating healthier now, cutting out snacking, althought today before tea was 4.9 then before bed was 21.1 (he had pasta) gave him quite a shock and think he is understanding the carbs thing now. As its early days and we are not too sure about this counting carbs thing he is cutting back on portion size re carbs, and adding more fruits and vegetables in. Will definatley ask about that new insulin as sounds like you have good control with that and also the pump you mentioned, may mention this at our next appointment. Today Misty1 i rang the nurse at the gp surgery (who was a bit useless when we saw her, the one at the hosp it fantastic) and managed to order a double quantity of test strips so at least that is off my mind now.
How long have you had type 1 sw11bloke? and how long does it usually take to become stable.
Thanks both for your help. x

 

[louby]

Ohh yes Misty1 , i found that website and they sent us a really good information pack for type 1. thanks though anyway.

 

[Liz King]

Hiya, Your son will get there!! I was diagnosed type1, 35 years ago and still going strong.

Firstly, make sure your son gets a referal to a diabetic consultant, ASAP. GP's are not specialised enough and deal manly with type2.

A consultant clinic will provide access to a diabetic nurse (lots of support to start you off correctly) explain how the various insulins etc work, book him onto a DAFNE course so that he make adjustments to his insulin dose in relation to food intake and exercise regime etc etc (that includes sex as & when) and alcohol - as a young man he will need this discussion preparation. If he is driving he needs to notify DVLA, and will need all the help and support to get his levels right in order to maintain his license and always always test before driving - I cant stress this enough!, and for every hour in during long journeys etc etc. It is over whelming to begin with, but there are no short cuts and the more info he can get the better.

Good luck, it will be a pain at times, it can be a mental battle but overall once he has the tools 'He will control his diabetes, the condition will NOT control him'!!

Hang in there and get him to post messages as and when, whatever the subject I'm sure we have all been there at some stage!

 

[louby]

Hi, Liz King, thankyou for your advise. We have noted re the driving advise is there any particular limit you can not drive at for blood sugars? He is under a great consultant and their diabetic team, who are very good. He has to ring every few days with his blood sugar readings. We are all getting more used to this now, gaining lots of knowledge along the way. He does seem to be coping well and eating sensibly, I have read about the Daphne course, it sounds very good although i hope it doesnt make you obsessional about food labeling. Luckily he is researching himself about this condition too.
Thank you for your reply to my post x

 

[Liz King]

hi louby,

Your son must NOT drive with a blood sugar @ or below 4, otherwise he will automaticaly be found at fault, whatever the circumstances - and personally I would not be able to cope if I damaged someone due to low untested/untreated blood sugar.
You have to use educated guesses, in as much - been to an exercise class, or run and blood sugar @ 5, I would advise eating a couple of sweets - incase your sugar drops. If blood sugar is 4 or 5 before driving have a couple of sweets. I have two blood test kits and keep one in my car along with a packet of sweets to hand. If going on a longer drive 20mins plus I would aim for bs 8 depending on time of day. This is another learning process - easier to manage regular drives to/from work, @ approx same time of day. If he always tests before driving, remember he has to do the same on the return journey! It is surprising that 20mins spent picking up a friend on the way, is enough time to alter blood sugar level, so he needs to test again if nothing else to discover if he is on the way up or down and then he will know if he needs any sugar to be safe! Also, as he gets through the honeymoon period and the hard work really kicks in, he will already have changed his driving habits. It also reveals activities which a "normal person" would not consider as expanding much energy ie I am invarably low/getting low after doing the supermarket shop, which doesnt compare to going for a run - speak to your consultant as it is to do with other hormones involved in preparing the body for exercise and it predicting for how long etc etc etc.

I note your comment re obsessional food labelling You do have to be a little obsessional - however with food, if you all try to eat freshly made food (processed is not good - for any of us) it takes the constant food label reading away. However, we all eat some and it will help him to appreciate the homemade more. The one down side of the DAFNE course is that it is based around reading food labels for foods that an average person would make easily themselves - but it provides how to alter insulin in relation to carb food counts, which is crucial for a healthy life.

keep asking - by the way my husband is also a type1 (diagnosed @19 yrs now 52 and still healthy) (neither of us knew about each others condition for the first few dates) Dating thats a whole other debate!! Anyway back to what I was trying to say, if your son wishes to speak to an older man re this condition I'm happy to introduce him.

 

[louby]

Hi Liz, so kind of you to take the time to reply to me. I have advised my son of what you have said re driving, and we are a bit paranoid about it, think the nurse said not to drive under 5.0 not sure if that is a dvla guidline must check that one out. Good idea tho about keeping a spare blood tester in the car and a few sweets etc. Reminded him to think about journey length too, as like you say sugars can rapidly drop. Luckily i do cook healthy so on the whole we all eat fresh food, apart from if i am working a late shift then they all usually get something for quickness, but may leave some home made soups etc, as his blood sugars are brilliant after these.

Trying to learn lots about diabetes for my son, luckily he is also very aware and reading up on things, even found out a colleague at another branch where he works is type 1 and around his age, so that is nice for him to discuss different issues.

I have now become the diabetes link nurse at my workplace, so hopefully will soon be on a few courses re diabetes. This subject has to be of massive interest to me now.

Brilliant news re your hubby 52 and still healthy from being diagnosed at 19, very reassuring. So proud of my son though he is coping really well now and adjusting to his new way of life.

Thanks again for your advise and support so needed at this time. x

 

[Liz King]

Hi louby,

Its great that your son has found someone of similar age with t1. Looking back over the years, I would have loved to have been able to talk to someone who was/had been a young t1, there are somethings you dont want to talk to parents about especially when t1 affects everything including intimate relationships etc and peer pressure etc. I have raised it with my consultant and she is having a think about it!!

yeh, your nurse says bs 5 mine said bs 4 - however the message is low bs are dangerous while driving and have to be tested for. Once your son has stablised after the honeymoon period DVLA will change his license to a three yr license - where every three years you have to reapply, and they check your BS etc with your consultant. It becomes automatic and is just another one of those things you have to deal with, luckily now insurance is no problem if DVLA has issused a license - in the old days it was a nightmare!!

Yep, hubby 52 and still going strong, Im 47 diagnosed @14 yrs and still healthy - this is not rare. When doing the DAFNE course I was quite upset to find out that Diabetes UK only give out long term awards @ 50 yrs, it was 25yrs. It gave me such a high, when discussing something with my consultant who said "when you are 80.." I was thrilled and told her so, she said its quite normal if you put the hard work in..!!! So your son has a long life to plan and enjoy .. remind yourself and him of this when things go wrong, which they will, but tomorrow is another day to live and enjoy.

Good luck and hang in there,
Liz

 

[louby]

Hi Liz, sorry for my late reply. Thank you for yours though. You are so encouraging and it is lovely to hear your story. Wow being diagnosed at 14, are you type 1 too? We are all coming to terms with this now, and my son is doing brilliantly. He is so sensible, thank-goodness, and he is adjusting well. He can now recognize the lows and treats them accordingly. We have been to hospital again today to see the nurse, and they have introduced the fast acting insulin with his evening meal just 2 units to see how things go. Sugar levels are really stable apart from after his evening meal, so hopefully this will help out. Had good chat with a dietitian too, which was useful. The team are very insistent that my son will rule this condition and it not rule him, luckily we have an amazing diabetic team. Thanks for your advise re driving, we have a leaflet now re dvla guidelines, and basically u are not safe to drive if you are under 5. My son is now aware of how he must check his sugars re driving, as his levels are all recorded on his monitor. Basically this is to prove you were not hypo whilst driving, as no doubt this will be the first thing the insurance company will ask for if an accident occurred.
We are learning new things each day. Its so encouraging to know that people like yourself and your husband are living healthy lifes after being diagnosed for so long, and as you say still going strong lol . I must admit i think i was more distraught than my son, but thanks to people like you on here and the support of friends and family, we are getting there. No doubt wont be a troubled free road but hey, a few bumps along the way are ok.
Hope to hear from you soon
xxx

 

[Misty1]

Hi Louby, so glad that your son is doing so well, and that you are so positive - like minded mum!
All best wishes x

 

[mentat]

Hi Louby, here's my story:


I'm a guy. I was diagnosed at 22. I saw a diabetes educator whilst in hospital. I was in the middle of an engineering and mathematics double degree. As you might imagine, after only an hour talking with an educator, I had my head around the relationship between blood sugar, carbs, and insulin, the effects of short-acting insulin, long-acting insulin, and GI, and how to self-adjust my dosages. This despite having no idea what diabetes was 2 days earlier.

I got very good at self-adjusting my dosages, very quickly. Initially my sugars were stable and predictable. Though living with my parents, and they cared a lot, they were minimally involved. I understood it far better than they did and did my absolute best to control it. I didn't want them looking over my shoulder and criticising - it really hurts me when someone criticises my absolute best work, and of course, with diabetes, your sugars are never perfect.

Very, very slowly my blood sugars became more volatile. I still have my old log books where I had figures like 5.2, 4.7, 5.5, 5.7 every day. Even then, my insulin needs would change inexplicably, and I'd self-adjust my dosages until things worked. Then usually they would be good for a while. But over time my sugars became less predictable. I worked much harder than before and yet my readings looked like 6.7, 4.3, 11.2, 7.8. I tried eating more consistently, but still nothing. I explained this to my endo, who suggested I try carb counting apps to help with more accurate carb counting. Which makes no sense, because I was eating the same thing every day and still having the same problem. (Don't expect great care from medical professionals - diabetes is one of the most complicated diseases to manage out there. I recently found a good endo and a huge weight fell off my shoulders.)

And why did none of my medical professionals tell me that hypos could mess with your head? That I'd feel weird disembodied terror, that I'd be aggressive? That I'd be emotionally vulnerable for the rest of the day? Why couldn't they have told me parents that if I started swearing at them it wasn't anyone's fault, just a sad consequence of diabetes?

The more diabetes refused to behave the more I did my absolute best to manage it and get on with my work and studies. Nobody had told me that it was normal for sugars to fluctuate, and after my initial experience with relatively stable sugars I didn't really understand what was going on, and all those little bursts of guilt and regret when I tested my sugar started to add up. I was turned off many things due to not wanting to deal with diabetes stress - dinner with friends, travel, socialising, etc. I dug my heels in with regards to my diabetes routine - refused to look into options like swapping my backpack for a bum bag, refused to look into what a pump could offer me (I legitimately didn't think it would make much difference in my case, and I still think so, but now I'm willing to actually look into the options).

Then I had a nervous breakdown. My emotions were out of control, there was a lot of screaming and crying and panic attacks. Hypos would completely f*** up my head. But, somewhat unusually, I still took care of my diabetes. In a confused stupor of self-doubt, I took time off work and studies. Best decision ever. I finally had the time and space to give diabetes the attention it needed. I realised that diabetes meant that I wasn't able to do as much in a day. That I would have more off days. That I could no longer apply the high standards that I used to apply to myself. I started reading about low-carb diets. I figured, Type 1 is an autoimmune condition, I'll try the Paleo Autoimmune Protocol. My sugars have never been better and my insulin dosages are very low and slowly creeping downwards.

Hopefully this story will help you save your son some suffering.

I should add that diabetes can be even worse for parents or partners at times than it is for the person who has it. Look after your own physical and mental health too.

All the best.

 

[louby]

Hi Mentat.
Many thanks for taking the time to reply to my post. Its good to hear from a young man similar in age to my son, and to hear your story. It gives me a good indication of things that may come, so at least I am prepared for any odd behavior etc. Its probably early days for us but blood sugars seem to be stable at the moment as were yours early on, although he has now stared on the apidra insulin and takes with his evening meal, he himself though has mentioned adjusting this dose, luckily today he rang his diabetic nurse, and she agreed to up the units a tad, as before bed his reading were always the highest, usually around 10-18, hopefully this will have an affect on reducing this level. No doubt this cant be rushed as i believe it takes a while to find out your right levels. He seems really positive and is keeping off the sugars, and reducing his carb intake, slightly reducing portion sizes too of this type of meal.

Diabetes is certainly a condition which has to be continually monitored, and i expect can become very draining as time goes by, lets just hope lots of research is done to help type 1 diabetics. I am trying to raise some money at work as it will be world diabetes day on nov 14th. I think you have done amazing continuing with your studies and holding down a job, also the fact you recognized you needed some time out to sort yourself out, a very wise idea.

I have been trying to let my son manage his own diabetes, and not smoother him, and he has took full control, although i do always sneak a look at what his figures were, don't want to keep hounding him asking him. Mums cant help themselves tho. Amazing though how now its the subject at the front of my learning, and luckily my son is interested too as he comes out with several facts about the condition so i know he is doing his own research. I must admit i felt ill myself when we found out about this condition, but as it wont vanish and is here for life it leads us no opportunity but to invest in it, learn all you can, and try to understand it and how it can affect someones life who lives with it, and thanks to people like you replying to my post we can gain the vital information we need, which are not in text books etc. So thank you once again.

Good luck with things, sounds to me like you have things under control, i have looked into the paleo autoimmune protocol and and looks very interesting so thanks for that tip. :thumbup:

 

[simonkit]

Hi,

I was in the same position just before Christmas last year, I'm 45 so I gues, in a strange way am sort of lucky in that I managed to get this far without my Type 1 kicking in. Either way it's a shock and a life transformation although it certainly doesn't need to stop your son doing anything, just needs a little more thinking about from now on.

My advice would be to ask for an "Accu-chek Aviva Expert" meter, get some advice on carb counting and using fast-acting insulin to compensate... start with it ASAP.. it certainly has helped me immensely to adjust to this new life and will help your son get those levels relatively stable quite quickly.

Sports etc. will be a challenge but are do-able.. I'm a keen hiker and whilst it's taken me a while to get my head around continue with this I'm pretty much there now.. quickly becoming a fan of jelly babies as a result, help to keep those glusoce levels up when active.

I found my local hospital very helpful with the carb counting (less so with the exercise though) so make best use of them.

Whilst it's a massive shock and somewhat scary it is possible to get things quickly under control and continue relatively normally, things just take a little more planning and thought

Simon

 

[NigelM]

Louby,

Hopefully by now, your son has been referred to a diabetes clinic, where he will be given the advice he needs to get on top of his diabetes. I was diagnosed late (42) with type one and was put on 3 or 4 injections a day and carb counting.

Leading an active life and coping with moving mealtimes it is very important to get onto multiple daily injections - sometimes called intensive insulin therapy - as soon as possible. Once you learn how to adjust the dose for each meal, it revolutionises your life and you are no longer a slave to the illness. I have maintained all the sports I enjoyed: sailing, skiing, mountain biking. You just need to think through coping strategies and have some emergency rations with you at all times. What I thought was a life sentence has just become a way of life.

Good luck with all the learning - I went crazy buying books for the first couple of years!

Nigel

 

[ciaramoh]

Hi,

I am 18 and have had diabetes since I was 4, I'm now on a pump but was on injections for 7 years. I have experienced a lot of things your son might be going through for example drinking or going out etc. If you need any advice or just think your son could use some tips feel free to contact me