# Parent of newly diagnosed type 1



## sarah40 (Sep 18, 2012)

*Hi all im a nearly 40 year old mum , my son is 14 and last thursday he was diagnosed type 1 diabetes... he has lantus at night and novarapid during the day for meals.... So proud fof him he is coping so well , i feel lost and worried and scared inside for him... Tomorrow will be his first morning back at school after having a week off... Im handing the reigns to him and them and im scared, I know he is ore than capable of it all but there are times when he does forget things and needs reminding..  *


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## Copepod (Sep 18, 2012)

Welcome Sarah40. As you seem to have found other sections of the boards and got involved already, I'll just say welcome here.


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## sarah40 (Sep 18, 2012)

*Thank you Copepod ... Yes have been scrolling through the forums did not realise at first there was already a part for parents here..   *


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## fencesitter (Sep 18, 2012)

Hello Sarah
Sorry you've had to join this club ... but you've come to the right place for support 
My son was diagnosed just short of 14 too. There's so much to take on at first but soon it becomes second nature. There's a really good book by Ragnar Hanas called Children, Adolescents and Young People with Diabetes (I think!) which is very comprehensive and highly recommended. 
You might find your son's levels are a bit unpredictable for a while, because often the pancreas recovers a little bit once you start taking insulin before it packs up altogether. They call it the honeymoon period! William's lasted about a year and for a while his insulin needs were quite low. Anyway, a big welcome and I hope your son has found it OK going back to school.
Best wishes
Catherine


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## Hanmillmum (Sep 18, 2012)

Hi Sarah and welcome to the forum 

I have no experience of teenagers but can certainly identify with how you are feeling as a mum. Pleased to hear your son is coping well so far. Getting back to school with a new way of doing things will hopefully slot into place relatively smoothly for him.


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## sarah40 (Sep 18, 2012)

*Thank you wills mum i will keep an eye out for that book...      I am sure he will cope bu inside you just cannot help but worry, as i know he has a rubbish memory and does no give me confidence that he will remember to do what has to be done alone yet...   Its hard to explain to my partner aswell as he is off the mind its all fine and tells me i worry to much..  im sure i do lol  We are going camping soon (booked before this came about) So slightly worried but looking forward to it.. I think we will enjoy it and its a much needed little break *


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## Tina63 (Sep 18, 2012)

Hi Sarah and welcome from me too.  My son was days short of his 16th birthday at diagnosis 21 months ago.  Your feelings are totally natural.  My husband felt I worried way too much but I felt he was just not interested.  Unfortunately it's in a Mum's job description to worry!  It will get easier on you over time, but just go with your feelings for the time being and find someone who is a good listener to blurt all your feelings out to.  

Glad he has taken so well to things.  It's early days, and just getting back to school is a major milestone I feel.  I remember it well.  Just encourage him to be as open as he can about it certainly with his group of friends.  Hopefully they will rally round him and keep an eye on him during the day.

The first few weeks you are fed so much information, it's mind boggling.  If you EVER have any questions, no matter how daft you think they may sound, do come on here and ask them.  People are so helpful and knowledgeable and are speaking from personal experience.

The book Willsmum mentioned is brilliant.  I got it from Amazon (am I allowed to say that???) It's bright orange in colour.  It's essentially a reference book but you can dip in and out of it and find out all sorts of bits of information and it's very well written and easy to read and digest.

This truly is the best place to come for advice and information though. People really are friendly and helpful, and even when you feel low people will help pick you up again.

Very best wishes to you and your son.

Tina


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## delb t (Sep 18, 2012)

*carbs*

Sarah- if you are seeing your dietician soon-ask her for a copy of a carbs and cals book -we were given one free from our team- and it shows you pictures of basic meals etc.hope tomorrow goes ok


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## Steff (Sep 18, 2012)

Sarah hi and a warm welcome to the forum


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## sarah40 (Sep 18, 2012)

*Thank you everyone for your kind words and warm welcome to the forum... I do have the carbs and cals book today    its a good lil book to have.... I agree on the information over load since being diagnosed.. then you have the fact you cannot wait to get back home to normallity and thats fine untill you realise that those nurses are on hand all the time imidiatly and face to face, when you get home its just you , your son and diabetes :/    Its good to know im not alone in those feelings and have told my son there is plenty of people to talk to we all understand and he has great friends who are sensible  *


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## Amanda102 (Sep 18, 2012)

Hi Sarah, welcome to the forum. Hannah was diagnosed nearly 11 months ago at age 11 and this forum has been a huge support to me during that time. I have asked loads of questions and shared my worries and concerns and have always found other members to give great advice and support. The first few months are hard as you adjust and you come upon 'challenges' for the first time. I swear our diabetic nurse must have felt I was stalking her, I was on the phone that often! Gradually though you get to know what to do in given situations and feel more relaxed about it all. Hannah has adapted well and so far it has not prevented her from doing anything a non-diabetic 12 year old would do, it just takes a bit more thought and planning. School has been a little tricky at times due in part to Hannah not wanting to make a fuss or be seen as different in any way, and in part to general lack of knowledge about the condition by the staff, but even that has got easier. Hannah's friends don't completely understand, but they know she has to eat at lunch time (where others may not bother if there is nothing nice left!) and they rally round her in a way that is quite touching! In short - be prepared for it to be worrying and challenging initially, but take comfort in the fact that it really will get easier for both you and your son x


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## sarah40 (Sep 18, 2012)

I am glad to be able to speak with people who have had the same experiance as friends who know but dont know about diabetes seem to brush it off.. its nice to hear other peoples experiances also to know that you feel similar to them and concerns.. I know my sons friends are very sensable also but would they panic in a hypo situation?!  I have numbers to call and have been given the tools we need so far, i know there will be more and alot more information to come its so hard to take in so im glad they do it slowly and are great about you repeating it all again...  Its a relief to come on here and just speak about it all and say how you feel with out people making you feel like you have nothing to worry about.. thank you for your kind words All means a lot to be welcomed and feel comfortable talking about things


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## Alba37 (Sep 19, 2012)

Welcome Sarah.  Sorry to read about your son's diagnosis.  My son has just turned 13 when he was diagnosed almost 7 years ago, so can empathise with you.  Agree with the others that the Ragnar Hanas book is the best there is but there is lots to learn about diabetes so just take things slowly and take it a day a time.


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## Tina63 (Sep 19, 2012)

Just wondering how your son got on at school today?


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## delb t (Sep 20, 2012)

And me -how did it go?


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## sarah40 (Sep 20, 2012)

*Thank you for asking, it went very well and he was glad to be back with his friends...We both said the big test is tomorrow as its all day   .....   today we went to his sisters flat and had to take a packed lunch fr him and it was the first time that he had injected in someone elses house, He did fine so puts my mind a lil more at ease ... but time will tell as i think at the moment its a novelty and when the novelty wares off so will his mood about it...  *


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## Northerner (Sep 20, 2012)

Glad to hear things went well Sarah, I hope this continues as time goes on.


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## sarah40 (Sep 21, 2012)

*Thank you northerner... last night had a worry coz it was my partners birthday and he had cake, so we stared at my son n was like right ok count this as a pudding and eat after your dinner ... He was like before mum i could have more if i wanted now its a slice and thats it...  I feel bad for being able to have food with no worries or counting the carbs like we have to for his, i dont know if any off you all felt like that?  so i felt a lil down last night for him... I know we will have days like that  :/   *


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## Tina63 (Sep 21, 2012)

Hi Sarah

I can 100% relate to how you felt about the birthday cake.  My son was discharged from the hospital on the eve of his 16th birthday.  Prior to him being in hospital he and I had been out food shopping specifically for his birthday do - loads of rubbish buffet food, gateaux and ice cream!!  Of course the day came and I felt awful.  It was all over bank holidays too so rather than a home visit, we had two phone calls a day the first few days from whichever nurse was on duty, and on the first call on his birthday I just broke down on the phone and sobbed.  I said how awful it was that he couldn't have any of this food, all things he had chosen, and basically she said nonsense.  She advised that he just filled his plate the once and didn't go back for more, but that he could have a piece of gateau or ice cream too if he wanted.  I grant you this was only day 4 of his whole diabetes journey and we hadn't even started carb counting at that point (dietician was on holiday for a couple more days) he was just on fixed doses.  His levels went all over the place, and we did make a panic phone call at around midnight that night as he was even higher than at diagnosis, but they were very laid back about it.

At the end of the day, he is always going to face situations like this.  You definitely did the right thing telling him he could have cake and that it would be his pudding, I would do exactly the same thing.  You could always point out that with him not having seconds yesterday there is some left for today, so he can enjoy another piece this evening as a pudding.  

Out of interest, does your son have a big appetite normally, or just whilst his body is recovering?  My son has a big weight issue and does eat really badly, despite knowing all the recommendations.  (It's not that I serve up rubbish food all the time, but he has access to his own money and pops over our local shop all the time buying whatever he fancies on top of main meals). He is no example to follow though as his control at the moment is dire, but we were told right from the off that no food is banned, he just has to calculate and bolus for it accordingly.  That's where my son falls down now as he is not injecting properly, skipping 2/3 of his injections most of the time these past few months, as well as eating cakes, sweets, chocolate etc.

Instilling good habits in your son now is so important.  Do allow occasional treats.  If you do think he is likely to want a second piece in future, just make sure he has extra appropriate units of insulin before his meal, or delay his injection until halfway through his meal when he knows whether or not he wants cake and how much, then calculate accordingly.  He is not going to want to go through life denying himself things all the time.  It just doesn't happen in the real world.  The important thing is just making sure he does inject.

Hope school has gone well for him for the rest of the week.  At least you have the weekend now so can relax a little bit.

Keep your chin up.

Tina x


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## delb t (Sep 21, 2012)

Glad school went ok - thats another little hurdle over.as for cake- my sons tucking into Tirimasu as we speak! ( always after a dinner)


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## Amanda102 (Sep 21, 2012)

I know how you feel! Hannah was actually admitted to hospital on Halloween last year and had been planning to go out 'trick or treating' with her friends that night. Plenty of sweets and rubbish on the menu. As it was she was sat in hospital dressed up in her costume feeling very sorry for herself. I can still see her dejected look now... Nearly a year on now though and she does eat some sweets occasionally and has pudding if the rest of us do. There is no doubt she has less than she used to, but that is really no bad thing. Her nurse tells her how her diet will be much better than her friends and she will be all the better for it. She especially likes it when she does sport as she gets to have a small chocolate bar beforehand... Fortunately she is very sporty! To be honest, now that she is on a pump, I don't find she eats that much differently from the rest of us. Before that she wouldn't have a sweet snack or the like between meals as it meant doing another injection.


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## michelle sw (Oct 12, 2012)

Hi Sarah, I'm a slightly older mum than u!, and our son who is also 14 was dx 1 month ago, so believe me I know how you are feeling, he also had a week off school, then went in for half a day, he is back full time now , and the school was really helpful,we attended a mtg there with his diabetic nurses,  they have 10 children with type1 so I have a lot of faith in them, my son is coping really fantastically in school doing own inj and when feeling low will take his BS and manage then effectively, I am a working mum so i am reluctant to not be here when he gets home from school just in case, but I know I will eventually have to return to my normal working hours just need to be confident that he will cope on his own, it's early days still, so maybe suggest a meeting with the school if thats not already been set up. hopefully they will be very supportive. just take one day at a time, I am.


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## Catwoman76 (Oct 13, 2012)

Hello and welcome I'm sorry to hear of your boy, but I'm sure he will do well, kids can very resilliant ,but obviously very worrying for the parents.  Take care and best wishes


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## JEF'Smum (Oct 17, 2012)

*Hello all*

Hi there. I have just been reading through this thread and it mirrors all my concerns. My son was diagnosed as type 1 about 6 months ago,at age 14. His year 9 school report was not as good as previous and I understood completely that this would have been due to illness and then the fact of coping with diagnosis. His teachers seemed much less understanding.

We had a horrible summer break as I think he was really depressed about it all. Did not go anywhere with friends, went to bed really late, lazed around in his dressing gown until about 4pm . All classic signs of depression. I have personal experience of depression so was able to understand but unable to really help him. Being a teenager, he is very anti listening to me or taking any kind of advice..it is heart breaking.

Since he started back at school (he is in year 10) his mood has improved a bit  and he has started socialising with friends again, but only gradually. Weekends he gets up at 2 or 3pm , despite much coaxing and eventual moaning from me, followed by inevitable arguments. It is so frustrating. I know he feels better if he gets up and goes out but if we make arrangements to meet anyone, he will ALWAYS make us late. It has got to the point where we often just leave him at home. I would not mind if he was going out with friends instead..but he will stay at home.

I often think that the symptoms of diabetes are hard to spot as in effect, its just the same as a teenage boy's normal behaviour.. tired and moody, only more so.

I would like to know if anyone else's child has suffered depression since diagnosis? If so, did you manage to get counselling? It is not offered here (yet) but our lovely Diabetes nurse has said that a counsellor is coming on board very soon.


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## Northerner (Oct 17, 2012)

Hi JEF'Smum, welcome to the forum  Sorry to hear that your son's school were not very supportive - it must be such a hard thing to go through anyway at that age, without school making it harder 

I can't personally offer any advice, but hopefully other parents here will be able to. I would also recommend taking a look at the Children with Diabetes website if you are not already aware of it.


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## JEF'Smum (Oct 17, 2012)

Thankyou very much.


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## bev (Oct 17, 2012)

Hi JEF'Smum,

Alex (14) was diagnosed at age 10 and although he didnt suffer with depression as such he did have times when he was very moody and couldnt explain how he felt - I think he was mainly angry with his diagnosis and sudden changes in his lifestyle. But - and I promise you this - things do get better. Do you have a local support group? Your son wouldnt necessarily have to go along but it may be  good for you to chat to others families in the same situation. CWD ( as mentioned by Northerner) has been a great source of help and support and we now holiday for one weekend per year with families who have a Type 1 child/teenager and they all love meeting up as it is the only time they are in the majority. Bev


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## HOBIE (Oct 17, 2012)

Hi i was diagnosed T1 in 1966 (3). My mam used to walk with me to the bus stop & give me a swan vesta match box with 2 big penneies in for fare. The teachers didnt know nothing in them days about T1.  Kids learn how to survive.  Good luck


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## fencesitter (Oct 18, 2012)

Hello JEF's mum
Sorry to hear about your son's problems. It is very hard to know what's normal teenage moody stuff and what might be something else. My son gets extremely exhausted during the week and stays in bed until lunchtime at weekends, but he also tends to go to bed too late as well. What time does your son turn in? If he's like mine and stays up late gaming he might be going to sleep in the small hours, which could explain it. But if he's having huge amounts of sleep it might be a sign of depression. There is an organisation called Young Minds that I've found useful over the years: www.youngminds.org.uk
You can arrange a call back with a mental health professional to discuss your concerns which is really good because if you try to go through the GP you can be waiting a long time for an appointment. At least they can help you identify whether you need to be taking this further, and maybe provide advice until your Diabetes service appoints a counsellor. My son has been such a trooper about his diabetes (also diagnosed just before the age of 14, now 15) that I sometimes wonder if it's catching up with him. He said to me last weekend that he can feel 'what's the point' despite everything in his life (apart from health stuff) going exceptionally well right now. He also said for the first time that he was the only one at school with lymphoedema and diabetes, so he hoped he would get a room to himself as he dislikes going through all his routines in public. This is the first time he's voiced feelings like that, so I am going to watch how it goes. He spends a lot of time gaming at home; he's away at music school and doesn't get the chance during the week. But I feel it saps his energy and can have a negative impact on his other activities. But equally he needs time just to be a kid and do what he likes ... Very hard to know what diabetes brings to the usual teenage issues. I had a period of 'grieving' after his diagnosis as I came to terms with all its implications, but he just got on and dealt with it. Maybe it's hitting our kids a bit further down the line? It will be interesting to compare notes. Meanwhile good luck.


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## Amanda102 (Oct 23, 2012)

Hannah was diagnosed age 11 and she ended up getting counselling for anxiety. She kept imagining symptoms of all sorts, finding rashes and lumps, feeling pains and all sorts.  I had her to the GP twice to try and reassure her, but each time the GP ruled out her symptoms she just came up with others. I think because we caught the diabetes quite early before she really felt ill, she subconsciously started worrying about what else she may have. Any way I am pleased to say the sessions with the counsellor really helped her and that seems to be behind her now. I accept it is probably easier with a younger child, but try and find a way to get him to accept some help. X


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## magicsteph2009 (Nov 15, 2012)

Hi everyone,
My 12 year old son was diagnosed with type 1 five weeks ago and I can honestly say it's been the most stressful time of my (and his) life. From taking him to the doctors because he was getting up to drink and wee in the night to being rushed into a&e and being admitted for three days. It was such a shock.  I have not thought about anything else since and although he's coping with it brilliantly, I worry constantly and keep thinking I'm going to wake up and it'll all be a horrible nightmare. We've been through the acceptance, the denial and being misdiagnosed, the every time i feel ill i must have something really wrong with me and now we're back at acceptance again. It's such a rollercoaster. Does it always feel like this??


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## Ruth Wilson (Nov 15, 2012)

Hi, 

Just to let you know, Diabetes UK runs a Peer Support service where you can talk to people living with diabetes 1-to-1 by phone or email. You can phone 0843 353 8600, or email through the website at http://www.diabetes.org.uk/How_we_help/Peer-support . 

Donna is a parent to a teenager, and we have several young people living with type 1 (e.g. Lucy) who might be worth a teenager having a chat with. 

The volunteers are trained and it's confidential, so it's a good place for a rant as well as sharing thoughts and experiences. 

Best wishes.


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