Very new to this

[Chels0322]

Hi everyone I am very new to all this. My son recently been diagnosed and we had the most horrific time. After diagnosis his kidneys were failing and still now we don't know if it was the kidneys that set of the diabetes early or the diabetes and severe DKA that set of his kidneys. We had to go into 3 hospitals. 2 intensive care units in 2 hospitals and 2 embrace ambulances I am struggling so much. My son is absoloutly fine. I feel like I am in a bad dream and will wake up soon. I really do hope this feeling fades. We are starting the process soon to go back to school and he is so upset and so anxious about going. He starts shaking and crying I need to help him some how X

 

[rebrascora]

Oh gosh! That all sounds very traumatic, but I can assure you that it does get easier, although I am speaking as a diabetic myself, not as a parent, which I think must be 10x worse. How long is it since diagnosis and how old is your son?
Which insulins is he using and how are you managing with them? Does he have Freestyle Libre sensors to check his levels or are you only finger pricking?
Do you have a supportive diabetes team to help you through this difficult time and have they been involved with the school in ensuring they understand his needs.
Does your son have any friends who know he is diabetic and can be supportive of him at school? Maybe talking about role models who are diabetic will help him to see that diabetes isn't anything to be concerned or embarrassed about. Not sure our previous Prime Minister Theresa May will hold much kudos to a young boy but there are top levels sports stars who are diabetic. Sir Steve Redgrave is certainly one of them but I'm not into football or rugby to know other more current names.

Hopefully some or our other regular contributors who are parents will be along soon but will tag @Thebearcametoo and @Bronco Billy to attract their attention to your post and they can hopefully give you a bit more insight and reassurance as parents themselves.

 

[Thebearcametoo]

Hi, welcome.

you’ve been through a very traumatic time and have been expected to take on a lot of new information. It will take time for you all to recover.

Ultimately it doesn’t matter whether the kidneys set off the diabetes or the other way you are where you are. We all try to look for causes to make it make sense but with chronic illness often there is no clear answer. You will move on from how you feel now. It will get easier.

Your diabetes team should be able to support both you and the school with information and training as required. My kids are home educated and always have been so school isn’t the only option you have but if that’s what works for your family then lean on your team to get him back in again soon so he can get back into the rhythm of it all. The team psychologist is available for you as well as him and it’s worth using that option as we have to juggle so much being parents of chronically ill kids.

 

[Cherrelle DUK]

Hi Chels0322, thanks so much for joining the forum.

I'm so sorry to hear about what's happening with your little boy. It's so difficult when children are having to deal with health issues so I can understand how stressful this all is.

I too hope that you have a supportive diabetic team as it might be worth asking if they offer any support groups for your boy to meet others in a similar situation or just to help reassure / prepare him for school.

We've got a parents section on the forum so you're welcome to post there for some support https://forum.diabetes.org.uk/boards/forums/parents.18/.

Do let us know if you have any specific question, you can give our helpline a call or ask away on the forum. It's a cliché but we're right here by your side to support you along this journey so do let us know if we can hep in any way.

 

[Chels0322]

Hi everyone thankyou so much for your messages! My son is 9 years old and we are only on the basics at the moment. Finger prick and insulin pens. He is on the nova rapid before meals and the lantus for bed time. Just so so over whelming all of this. I do struggle alot as he is such a picky eater. He will only eat apple or grapes as a fruit and veg is sweetcorn mash and roast potatoes. I try him with new things but he doesn't like them and when he was little he would eat anything at all. Just such a massive life style change for us all. He is wanting to go do more swimming what are people's thoughts on this ? How do we go about checking his sugars and times etc xx

 

[helli]

@Chels0322 it is stressful with a new diagnosis.
Please remember that your son has Type 1 diabetes but type 2 is the most common so a lot of what you may read about diabetes is not relevant. There should be no reason to change his diet, for example.
Swimming should be fine. Probably a good idea to check his blood sugar levels before he starts and when he gets out. The exercise may reduce his levels so have a snack on hand.
There is no reason why he cannot do sport - there is a full cycling team that have competed in the Tour de France who have Type 1 diabetes, there is an England Rugby Union player with Type 1, there is a Spanish footballer with Type 1, ...

Sorry, I do not understand your question about checking his sugars and times - I assume you have a finger prick meter at the moment although it may be worthwhile asking if you could get Libre for him as. this will reduce the number of finger pricks needed. If you are technical, there are unofficial ways to set it up so that you can see his readings on your phone.

Feel free to ask questions here and share your frustrations but also use your diabetes team - ask them questions.
The difference is the team will know the theory and help with the official things like advising the school whereas the forum have the hands on experience so we know what you are going through.

 

[Bruce Stephens]

He is wanting to go do more swimming what are people's thoughts on this ?

He should do it, of course.

The problem is that exercise tends to cause lower blood glucose and a hypo during swimming is obviously more risky than normal. A snack beforehand might be appropriate. It's worth discussing with your healthcare team to find a suitable approach (when to measure, etc.). (It might also be possible to reduce insulin a bit: if he's swimming in the afternoon then inject a bit less for lunch. Again, discuss with your healthcare team to come up with possible strategies.)

 

[Thebearcametoo]

Hi everyone thankyou so much for your messages! My son is 9 years old and we are only on the basics at the moment. Finger prick and insulin pens. He is on the nova rapid before meals and the lantus for bed time. Just so so over whelming all of this. I do struggle alot as he is such a picky eater. He will only eat apple or grapes as a fruit and veg is sweetcorn mash and roast potatoes. I try him with new things but he doesn't like them and when he was little he would eat anything at all. Just such a massive life style change for us all. He is wanting to go do more swimming what are people's thoughts on this ? How do we go about checking his sugars and times etc xx

Don’t worry about his diet just now. Just feed him the foods you know he likes and that will make it easier to carb count. If he has a limited diet you’ll soon learn the carbs by heart but a notebook is helpful to begin with. The carbs and cals book is really useful for carb counting.

As for swimming. Great. Exercise tends to mean blood glucose drops but sometimes the excitement makes them rise so it will be a bit of an experiment. We found starting sports with a BG above 8 was better and checking every half an hour helped us to know what was going on. Having snacks of around 10-15g of carbs like a few crackers, a packet of crisps a cereal bar (some are much more than 10-15 carbs so check packets) gives a slower release of carbs than sweets/glucose so having something like a packet of crisps before swimming can be helpful. Exercise can have an impact on numbers for up to 24 hours after so watch for hypos later in the day.

Hypos need addressing immediately. Highs we tend to leave until the next meal.

 

[trophywench]

What arrangements do the school have in place to accommodate his needs?

 

[everydayupsanddowns]

Welcome to the forum @Chels0322

Sorry to hear about the traumatic time you’ve had with your son’s diagnosis. No wonder you were shaken up by it!

Getting a diagnosis with T1 in the family can feel overwhelming, but things really DO get easier. It’s a huge learning curve to begin with and everything will seem scary, impossible, and befuddling, bit soon enough lots of the things you are having to actively thunk about right now will just slip into the background. Kids are amazingly resilient and adaptable, and kids with T1 are superheroes. You will be the Alfred to his Batman, and soon enough you will begin to work out how to get T1 to fit around his life, rather than the other way around 🙂

Lean on his clinic and DSN for support. They’ve seen it all before, and no question will be ‘silly’ to them.

You might also like some of these words of advice from members here, the top tips they have picked up over the years:

5 Top Tips for Better Diabetesing

Just found myself absently wondering what I would say to myself if I could go back in time ‘Bill and Ted’ style and offer newly-diagnosed-me some hints and tips for better diabetes management, and a better relationship with my diabetes from future-me. What 5 hints and tips I might offer myself...

forum.diabetes.org.uk

 

[Bronco Billy]

Hi @Chels0322. Your situation sounds very scary and is fairly similar to mine. When my daughter was diagnosed, she was in life-threatening DKA and was in hospital for a week, including a night in the high dependency unit of a major hospital nearby.

The first thing to say is that it will get easier (honest 🙂). What is stressful, difficult and hard work now will soon become routine to the point where it’s just normal life and you won’t really notice what you are doing. Even though you might not realise it, you are learning more every day, which means you are getting better at looking after your son.

Has your hospital team trained the school staff yet? If not, they will before your son goes back to school. His concern is natural, but he should receive the support he needs to ensure he stays safe. I wrote this thread in the ‘Diabetes in School’ section of the forum. It contains some useful information to help you know what you can expect from the school. All you can really do is reassure him that he will be safe, the staff will know what to do and you can always go to the school if absolutely necessary.

Definitely let him continue swimming. My daughter is also a keen swimmer, and being able to do it helped her come to terms with her diagnosis. It will require some adjustments to insulin ratios etc., but your hospital team will be able to offer advice about this. With adjustments, swimming is definitely possible and a realistic activity for him to do.

Don’t worry, everything will be fine.

 

[NotPink]

Its difficult for parents in any situation when a child doesn't eat what is expected. Taste buds change and food textures change as we grow.
One of my sons was an extremely fussy eater from the word go as a baby. We decided to play it 'cool' All the relatives were encouraged to play it down too so if we went for family meals he would sit with us and have things set out in small bowls to taste and enough food he did enjoy too. This worked for him and us. He is now a healthy lad and eats anything. He is not diabetic so cannot comment on how this would have affected him. Good luck. 🙂

 

[Chels0322]

Hi guys sorry it has taken me so long to reply !! My sons first morning back at school today went fantastic!!! He loved it and said he can not wait to go back tomorrow !! My sons school are absoloutly fantastic and have everything in place for my son. Also I have had a call today for my sons consultant and the are wanting to do some blood tests because the dont know if my son has been wrongly diagnosed!!!!!!! So angry! The dont know if he is type 2 or non diabetic ! So many questions and so many answers need as if we haven't been through enough!! Will keep you all posted on what the out come is. Not getting our hopes up as she has told us not to and this is so rare to call us back xx

 

[Thebearcametoo]

The first few months can be a bit unclear as to the diagnosis of type etc. When someone presents with symptoms they take an educated guess at which type of diabetes it is from the symptoms and various tests but sometimes those tests don’t give a clear result and once the symptoms are under control sometimes the pancreas seems to be working again. This can be part of the honeymoon phase and once the pancreas ‘tires’ then you get symptoms again or it may have been something other than diabetes causing the issues that lead to the first lot of symptoms. Good practice is to review cases and repeat blood tests as needed until there is a clearer answer. It can be frustrating though when you’ve just started to get your head around one diagnosis. What you know to be true is that he was very ill and currently he is well because of the treatment he’s had. The future will become more clear over the coming months.

I’m glad school went well for him. It’s great that he has good support there.