Coping with it all

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anita.g

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Hello, my son was diagnosed with type 1 last summer. Despite putting on a brave face and 'dealing' with it, I am still in pieces. I gave up my full-time job at the time (I'm a teacher) and in fact ended up getting a part-time job at his school which he started last September. We are now on 4 jabs a day but still the control is not great. The hospital are pretty unhelpful. I'm petrified of leaving him with anyone other than my husband (also type 1) or school and want, at some point, to get back on with my career- which was going well before this. But when? What mother would leave her diabetic child with a nanny? So do I just not take the jobs I could for another 5 or 6 years? Also, my daughter is close in age to my son and I'm petrified she will get it too, with a father and brother both type 1. When will they find a cure??
How is it OK to live with this??
 
Hi Anita, welcome to the forum 🙂 I'm sorry to hear of your son's diagnosis. We have lots of parents here who will hopefully be able to give you some help with any questions you may have. There are also some very useful links here:

http://www.diabetessupport.co.uk/boards/showthread.php?t=10406

If you are not aware of them, the Children With Diabetes group are very knowledgeable, plus a lot of people find the book of Type 1 Diabetes in Children, Adolescents and Young Adults by Ragnar Hanas very useful.

What is his HbA1c like currently? Do his levels swing a lot, or is he generally high or fighting lows? Has a pump been suggested? I believe a lot of parents are able to get help in school for things like testing and injections - has this possibility been discussed? Sorry for all the questions! Hopefully, some of the parents will be along to share their experiences. Please feel free to ask anything you want - there are no 'silly' questions here 🙂
 
Hi Anita, I can only sympathise with your predicament. Please try and look at the positives, whilst your son is currently having problems, I'm sure it shouldn't last long with your and your husband's support. Lots of kids have T1 and live fairly normal lives (didn't your husband). I presume you can't get a job at your son's school?

I would like to suggest that if your tag is a real email address then you (or get Alan to) change it to something that is anonymous, you don't want people emailing you directly.
 
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Hello Anita and welcome to the forum. I'm sorry to hear about your son's diagnosis. As Northener says there are a fair few parents on here who will only be too happy to share their experiences with you as well as pass on their wealth of wisdom. I have so much respect for all the parent carers. It's hard enough dealing with this disease when you have it yourself as an adult, but it must be horrible when it's your child who has it. Well done for how you have coped with it so far and good luck for the future. XXXXX
 
Welcome Anita - and sorry you have to join this board.

Can you say roughly how old is your son, to help us make appropriate comments? How old was your husband when he was diagnosed? He will have some ideas about how he felt at various ages, even if technology has moved on eg until around 20 years ago, children were routinely put on bimodal insulin, so they didn't have to inject at school, although this regime doesn't offer as much flexibility as basal bolus (eg 4 injections a day) combined with carbohydrate counting and adjusting doses according to food, activity, stress, infection, weather etc. These days, pumps are also offered to some children and adults if they meet NICE guidelines (for England) or other guidelines for other parts of UK. Even if there's no cure on the horizon, improved techniques mean that many people diagnosed as children live into adulthood, with only very minor or even no complications. For genetics of inheritance of type 1 diabetes, the field is continually evolving, so it's best to ask your diabetes team for advice specific to your family's situation - and perhaps blood tests.

Many parents on this board are also members of http://www.childrenwithdiabetesuk.org/ email support list.
 
Hi Anita - and welcome.

Have you spoken to your husband about living with diabetes. I don't know how long he has had it but he might be able to allay some of your fears.

Are you carb counting ? From what some of the parents on the forum have said it can be hard at times to get and keep good control - growth spurts, adolescence can all affect how well you use your insulin.

Hope to see you around gathering information.
 
Hi Anita. Welcome 🙂

As you can see from the wide ranging membership on here, it is ok to live with diabetes and many of us were diagnosed as children/teenagers. It may be that your husband is seeing it as less of a problem than you since he is already on the 'other side'.

I can understand you feeling alone and overwhelmed but that's where we come in. Any support you need, we'll try to offer a guiding hand.🙂

Rob
 
anita.g said:
Hello, my son was diagnosed with type 1 last summer. Despite putting on a brave face and 'dealing' with it, I am still in pieces. I gave up my full-time job at the time (I'm a teacher) and in fact ended up getting a part-time job at his school which he started last September. We are now on 4 jabs a day but still the control is not great. The hospital are pretty unhelpful. I'm petrified of leaving him with anyone other than my husband (also type 1) or school and want, at some point, to get back on with my career- which was going well before this. But when? What mother would leave her diabetic child with a nanny? So do I just not take the jobs I could for another 5 or 6 years? Also, my daughter is close in age to my son and I'm petrified she will get it too, with a father and brother both type 1. When will they find a cure??
How is it OK to live with this??
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Dear anita so sorry you are finding it hard, it is daunting, but there is lots of help, advice and support out there. Don't be afarid to ask. As for a cure, I don't know, but many of us live in hope that it will happen one day, but I don't know when. Try and be positive, even though it's tough. Take care With best wishes Sheena
 
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