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Can't believe my baby has diabetes

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XandersMum

Member
Relationship to Diabetes
Parent of person with diabetes
Hi Everyone

So, last Thursday I took my son (8) to the doctors as he didn't seem to be getting better following a dose of novovirus the week before. The doctor did a dipstick then a finger prick, the next minute we were given a letter and told to go to the Childrens Assessment at the local hospital where after various tests etc... I was told he had DKA and Type 1 Diabetes. Shellshocked is the only word I can use to describe how I feel. He came home four days later and is now injecting himself (which considering it was taking 30+ mins to do a finger prick and 20+ for insulin a few days ago is AMAZING!). I feel as though I am on autopilot with tests and injections, carb counting, glucose diaries, nurse and dietician visits whilst my other half is an emotional wreck and I don't think I've completely taken it in yet :( Any advice, additional reading, hints and tips ???

Andree
 
Hi Andree

So sorry to hear your story. It's almost 2 years to the day that I was there with my son, facing a Type 1 diabetes diagnosis. My son was older, 15 almost 16, but it doesn't make it any easier as a parent. It's a massive thing to have to deal with for the whole family. You will be on a real emotional rollercoaster at the moment. All the comings and goings of the first few weeks take you into a whole new world you didn't know existed. I said, bringing my son home from hospital was like bringing home a brand new baby all over again, so scared something would go wrong and the safety net of all the doctors and nurses was gone, despite having 24 hour phone numbers. It was horrible.

My advice to you at this stage would be 'just go with the flow'. If you are feeling pretty strong emotionally at the moment but your partner is falling apart, watch out, the roles WILL reverse at some point. We both had meltdowns at different times. We had nurses phoning us twice a day for a start as it was Christmas/New Year and they were running on skeleton staff. Just talking to one of those had me in floods of tears one day, it came out of nowhere.

Your son is doing amazingly well if he is testing and injecting my himself already. My lad had a massive needle phobia and I knew it was going to be a big deal, but right from the second injection he took it all on board and did it himself.

My advice to you would be don't hold back your feelings, and don't let your husband or son hide theirs either. Talking is good therapy in itself. You will have to deal with the school next week. Don't send your son back until you are sure either your nurse or you yourself are able to go in and talk to them and find out what knowledge they have or help they are prepared to put in place. At the very least they will need to be able to recognise hypo symptoms and be able to help him if necessary. You will need to provide some hypo supplies to be kept at school too. Your child probably hasn't had a hypo yet though. At least at the age your child is they are better looked after than at secondary school. That really was scary with my lad, with assurances that all teachers had been informed, when in fact it meant they had all been sent an email by one person, but most of them hadn't bothered to read it!

Thinking back, the one thing that really freaked us out as a family was the thought of a hypo. I think we all imagined our son would instantly collapse unconscious in a heap on the floor in front of us. We were all scared stiff what would happen. I don't know if you team have told you about that yet (I would imagine they have) and though it wasn't pleasant for either him or us, we did recognise his first one, all of us. He turned deathly white, got the shakes, said his legs felt wobbly, felt a bit sick, it was very obvious something was wrong. He tested, and was below 4. In the early days we kept Coke in to treat it, and it worked very quickly. Now he prefers dextrose tablets.

If there is anything that scares you, or anything you are unsure about, please come on here and ask. People are brilliant. I have learnt so much more from on here than anywhere else. People here are living with it every day and have so much experience, real life experience, even better than nurses or doctors can often tell you.

My son did go through massive anxiety issues early on too, scared to leave the house. For a start its remembering to take all the paraphenalia with you, but it soon becomes second nature. I found a pencil case with 2 compartments was good to keep his meter, pens, spare needles, strips etc in, and a pack of dextrose tablets and a cereal bar. He put that in his backpack each morning and re-stocked it each night. If you son will be injecting at school too, it may be a good idea to leave some spare needles with the office or his class teacher too. I remember being called to school (quite some hike away) in the early days as my son had his pens, but had forgotten needles!

The early weeks are tough on all of you as a family. Your son has a massive lifestyle change to take on board, but so do you too. I saw my son as fragile in the early weeks - months even - but now I come to realise he's just like all his mates. Life does go on, and he's still the same boy.

Good luck with it all. Do keep coming on here and posting, you will get some fantastic support.

Tina
 
Hi Xandermum - sorry you have to be here but welcome and hugs- what a superstar your son is!- there is so much to take in at the start- its normal to feel overwhelmed-I certainly did for several months-I can only say it will get easier as you get your head round things- my son is 16 and was diagnosed a year ago - it hasnt stopped him doing anything it just takes abit more planning -and we will all help you on here so ask away
 
Hi Andree, welcome to the forum 🙂 I'm sorry to hear about your son's diagnosis, but it is good to hear that he is quickly adapting to things. It can be a very steep learning curve to begin with, but it will become easier as you become more knowledgeable, so please ask any questions you may have - nothing is considered 'silly'!

I would highly recommend getting a copy of the excellent Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas, which covers just about everything in a very accessible form. You might also be interested in getting a support and information pack for people with a recent diagnosis of type 1 diabetes from JDRF (Juvenile Diabetes Research Foundation). Plus, check out the Children with Diabetes website.

Finally, have a read of Adrienne's post in the parents section, a guide to what you can expect in these early weeks and months.
 
Oh and one more tip. Don't ever let yourself run low on any supplies. I have personally made sure we have more than enough of everything. Once we break into a box of insulin for example, I order a new box, so I always have one full one of each type and a newly opened box. Needles too, we have at least one spare box, and testing strips too. Get in the habit of carrying dextrose tablets (or Jelly babies) in your handbag AT ALL TIMES. Never leave the house without something on you, your son too. You may want to get him a smaller bag to carry around with him when not at school. If he goes out to play on his own with his friends or anything, he will need to carry his meter and hypo treatments. Allow him to choose a bag maybe.

The first time you send him off without you, you will be on tenterhooks. It's horrible. As I said, my lad is much older, but I still feared for him every time he was out of sight. I have had to learn to let go given his age, it doesn't mean I don't worry about him, but I have to remember he is essentially just a 'normal' lad.
 
Hi Andree, welcome to the forum though v sorry you have to be here x


That autopilot feeling sounds familiar, in a state of shock yet functioning and going through the motions. It will be a change of ways for your dear son and all the family to varying degrees. So much information to take in, so much to learn and vital it's done well to keep your baby well - no pressure then 🙄

We were given the book Northerner recommends "Ragnar Hanas" on diagnosis and it was a valuable tool. 9 months later I found this forum (I'm a bit slow - lol!) and it was another valuable tool in learning about D and gaining support as needed. So keep coming back and posting as there are some very knowledgable and kind hearted folk here.

Best wishes 🙂🙂
 
Hi sorry to hear about your son I was diagnosed at the age of 9 and it was a bit of a shock but I soon learned to deal with it as we can't change but it's great that your son is doing his own injection etc. a tip for when he goes back to school is to make a emergency box which will be kept at the school with sugary and carbohydrates in just in case he goes low or forgets a snack as that's what I always did it will put your mind at rest too ad write the best before dates in a diary or calendar so it can easily be changed
 
Hi there...just wanted to say, please can you tell Xander from me that I think he is awesome? 🙂 I was a big coward about jabs & was a lot older before I'd do my own! I was a baby when diagnosed, but am in my 30s now, I'm a mum, in good health, I was in cadets for years doing lots of adventurous stuff, went to uni & have travelled to lots of places too, so I can vouch that with care & forethought the diabetes needn't hold you back. Welcome to the forum, it's a great place to let off steam, get great advice & be with people who 'get it'. You'll get there & I bet in very little time you'll be able to encourage others too. All the best. Xx
 
I was in the same position in January of last year - it is horrendous, the shock, the way you are just sent home to get on with it and the "Why him?" questions you ask yourself daily. He sounds like a tremendously brave little boy and all I will say is that it does get easier. My little boy is 3 and is doing his own blood tests, he is also due to go on the pump in a couple of months and cannot wait - the children cope much better than us xx
 
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