help needed with newly diagnosed type 1

[Sall]

Hi everyone,

I am a mother of a 14 year old son who was diagnosed with type 1 just 2 weeks ago (incidentally I was diagnosed with type 2 just 2 weeks before that). For the first couple of days he was stunned but seemed to cope well, even finding it quite interesting testing his blood glucose levels as he likes gadgets. He has become moody, sullen, argumentative - and yes I know this can be typical teenage behaviour as I have 2 older children (20 and 16 - the 16 year old was diagnosed with epilepsy about 7 weeks ago), how should we handle it? This morning he flew into a rage because his brother woke him up about 20 mins earlier than he usually wakes. He came downstairs, yelled at me then went back to bed saying he wasn't going to get up. Eventually after a bit of persuasion and cajoling he did get back out of bed. He said he wasn't hungry (if he wasn't then this was the only time since diagnosis that he hadn't been) so wasn't going to test his blood sugar or eat or take his insulin. I know that he didn't really mean it and that it was his anger talking so I tried calmly to say that he shouldn't miss his injection and that by not eating he would be very hungry in school. I then had to leave for work as I was already late. I think being left on his own was probably the best thing as he rang me about half an hour later to tell me he wasn't taking his blood suger meter to school with him as his finger pricker had stopped working. Any tips on how to deal with this type of behaviour would be much appreciated. My stress levels are rapidly rising!

 

[catherinecherub]

Hi Sall,

I am not the parent of a diabetic child.

What I would say is that your son is angry at being diagnosed. There is a grief process for anyone diagnosed with diabetes and I think that this is where your son is at. He needs time to adjust and is probably thinking about all the negatives involved, injections for the rest of his life, his friends and peers reaction to his condition, etc......... It has only been 2 weeks.

I am sure he will get there soon and you are doing the right thing by being calm. Educate yourself as much as you can so that you have answers for all the questions that he poses.

Hope this helps,

Catherine.

 

[SophiaW]

Hi Sall, I can't offer much advice because I don't have a teenage child and I haven't experienced anything like you describe with my daughter as she is still young and not reached the teenage years yet. I just wanted to say though that my heart really goes out to you, as a family you have all had a lot to adjust to in recent weeks. All I can suggest with regard to your son is to be as supportive and understanding as you can, it must be a difficult time for him especially at his age. I expect that, as with our experience of T1, it eventually becomes easier once you get into the routine of testing, injecting, eating and exercising. If you offer your support he will realise that he's not in this alone which might be something that frightens him. Your diabetes nurse may be able to offer some advice for you too as she will have experience of other families with teenage T1 children.

 

[catherinecherub]

Hi Sall,

This site might help your son,

http://www.diabetes.org.uk/Guide-to-diabetes/My-life/

It is a site for young people with diabetes from D.U.K.

 

[Celtic.Piskie]

He's going to have diabetes forever.

He's always going to be watching his sugars, always having to take medications, endless reminders that if he doesn't control it he'll have his feet cut off.

Add that to normal teenager-ness, and wouldn't you be angry?

Right now, he just wants to be like his mates normal. He never will be.

There is a huge period of adjustment needed, but eventually he will come to terms with it.

Keep things as similar as they were before, dont worry about his sugars too much as the first few months are a challenge to anyone.
Let him know that you still love him, and that he will be okay.

 

[suzi]

Hi Sal,
Welcome to the forum and big (((hugs))) us Mums need them too and by the sounds of it youv'e a lot on your plate at the moment. I'm a mum to a T1, 10 1/2yr old and to a 13yr old son, so i know a bit about teenagers and a diabetic child (just not both together, yet!.)
Naturally your son is feeling angry, frustrated and perhaps a little out of his depth. It's early days and even my Andrew gets annoyed with being diabetic and having to inject and constantly take his bs.(his favourite words are "in a minute!") Anger is a proccess of not being in control, and thats what your son feels right now.
But be careful, both high and low blood sugars can make them aggresive and unco-oprative, and we found Andrews behaviour was very aggressive whilst on Lantus.
Try to be patient and let him browse the forum, that way he'll know he's not the only one, and may take some advise on board,
Take care and good luck,
Suzi x

 

[scotchpie]

Hi Sal.
Congrats on finding this website, hopefully you wont feel so alone in the minefield that is diabetes
Being as calm and understanding as you can should help. I was diagnosed earlier this year as T1 and in the months leading up to the diagnosis i had the most terrible mood swings ever known!
I had no idea what was going on and at one point even considered the possiblity that i might be losing my grip :shock:
Having severe highs or lows in my blood sugar levels affected my mood severely
Try to encourage your son to monitor his levels and take his insulin and as his levels settle down, so will he. Hopefully he will then be able to come to terms with his new life. let him know that the more he takes his injections the less of an issue they become.I had real trouble adjusting to mine but after a few months, they became a much less painful part of my day and now i dont even think about it. Its no more upsetting and gets no more of my mental energy than swallowing an aspirin.
Diabetes is not the end of his childhood but the beginning of the rest of his life. Diabetics can lead normal, productive and happy lives and i've never met one who's had his feet cut off!

 

[Sall]

Thankyou all for your support and helpful comments. We had a hospital appointment today and the doctor told Sam that it isn't just his blood sugar and insulin levels they are interested in, that they also need to know how he is feeling as they want him to be happy and I think he took that on board because he then told them about how sad and angry he was feeling the other night.

I know we will still have some rough days, some of them will be just normal teenage stuff but some will be to do with his diabetes. I think we will just have to take it one day at a time.

 

[amandeep]

My brother was diagonised with diabetes when he was 5 yrs old. During teenage he was very moody and would be angry at us for days at any small thing. He still is moody, he's 23 now, but does not have a foul mood as often and also it does not stay for long.

Whenever he was angry with us during teenage, my parents always took his side so as to improve his mood. In bad mood, he likes to stay alone. When the sugar level is high, he gets angrier and when he is angry, the sugar level goes up.

 

[scotchpie]

Dont take this the wrong way but I'm so glad that someone else has had experiences of moods caused by sugar levels. I was told by my doctor that bg levels have no effect on mood which worried me.

 

[copepod]

Hi Sall
What insulin regime is your son using? If he's taking basal (long acting) once (or sometimes twice a day) and bolus (short acting) with each meal, then it is possible to miss bolus injections if not eating or adjust the time of meals and injections. If he's on a bimodal regime (usually 2 injections per day, each with 2 peaks, 1 about 30 minutes to 1 hour after injection, the second around 5 to 6 hours later) it's mush more difficult to adjust insulin intake to life - meals have to be adjusted to insulin. It's perfectly OK to be angry / sad / cross etc when diagnosed with diabetes of any type at any age, but developing type 1 in teenage years must be particularly tough for the teenager, parents, siblings etc.
How's your other child getting on with epilepsy diagnosis? That's going to have a big impact on driving, jobs etc, possibly more so than well controlled diabetes. How about the effects of your diagnosis?

 

[hanadr]

Hi Sall
Go to the Diabetes Uk website and search out what services they have for kids in your area. Sometimes it helps if they feel they are not alone. I know Diabetes Uk run all sorts of supporting activities for young people. Including summer camps( for next year perhaps 8) )
that's Diabetesuk.org.
Hana

 

[suzi]

Hi Sall,
Looks like your sons hospital team are great, Hanna mentioned the Diabetes Uk site, which is fantastic for organizing events for kids of all ages. I'm in N Ireland so its a bit different, but we've been on great family weekends that cater for all the family not just the diabetic child, there fun and imformative and you make lasting friendships. Andrew my 10yr old went to Summer camp when he was 8yrs old for the first time and came home doing his own injections. Through his DN at the hospital they organise fun days, hallowe'en/Christmas parties ect, getting involved and sharing with children his own age will work wonders for him. Andrews favourite is the ten pin bowling matches they organise twice a year.
Take care,
Suzi x

 

[Sall]

Hi copepod,

He is on Levemir before bed and Novorapid before meals. His glucose levels are still relatively high and the insulin doses are still being adjusted. We haven't yet had the chat with the dietician about carbohydrate counting so he is on fixed doses. I have to say that the hospital team have been brilliant, particularly the nurses.

My son with epilepsy, on the other hand, has not had such great care. As he is 16 he counts as an adult so doesn't get to go to the Children's Hospital. Twice he was taken to A&E, the second time he spent the night on the same ward as drunks and drug addicts as they were all waiting for CT scans.
He was referred to another hospital to see a consultant at the beginning of August (which is when he had the formal diagnosis) and we were told that he would be referrred for an EEg and followup appointment. I left it a few weeks and then discovered that our GP's surgery still hadn't had a letter from the consultant confirming diagnosis (just the hand written note on scrap paper that he gave me to give to them at consultation). I rang the number on the letter from the hospital and finally, after speaking to lots of other people, was given the number for EEG referrals. They said that they hadn't received a referral for him and gave me another number to ring - that of the secretary typing up this particular locum consultant's notes. She apologised as the letter to the GP was still on her desk waiting for the consultant to sign it, she added that he wasn't around that often as he was a locum. She promised to fax the letter and refer him for an EEG. That was just over a week ago so still waiting for an appointment. He is going to be 17 in December and is really upset that he cannot apply for a driving license. He hasn't had a seizure since being on meds but still has several 'absences' a week, one of these he had whilst putting on his pjs and fell over banging his head. During the conversation with the secretary (who read out the final paragraph to me) he isn't even on the standard dose yet. Either I misheard, or he didn't explain correctly, that the std dose is 100mg twice a day and not 100mg per day in 2 doses. He can only go up by 25mg at a time for a 2 week period as it can cause nasty side effects if increased too quickly.

 

[Sall]

Hi Hanna and Suzi,

Thanks for the info - I have looked at that site and the events do look good. Sam is a very shy lad and doesn't like unfamiliar situations. The diabetes nurses offered to contact local groups on our behalf when they came to the house,but he said he didn't want them to. He may change his mind in time. On a positive note though he has been much more upbeat since last week. We have a routine clinic appointment this Thursday.

Sall

 

[suzi]

Hi Sall.
Glad to hear things are improving with your son, it aint easy , they all have good days and bad days, even my 10yr old. Hope they sort your other son out soon re his epilepsy, i think they are treating him very badly and think its so unfair for them to put him in the adult clinic (what ever happened to being an adult at 18!)
I haven't forgotten that you were diagnosed with T2 not so long ago and i hope you are keeping well, don't forget whilst your mothering your children to give yourself a bit of TLC, I know it's hard, but try to find some ''me'' time,
Take care
Suzi x

 

[Miasma]

I dunno if this will help at all haha but I was diagnosed this Jan, aged 18. And I was fascinated at first, a little shocked, understandably, but very intrigued and excited in a sense that I was special enough to get type 1 haha I suffered terrible moodswings, still do! Perhaps explain to him about ketoacidosis and the complications of diabetes, he'll start taking it a little more seriously and maturely, hope he calms down and gives you some peace :} aha xo