What happens after child is diagnosed?

[user1471508872]

Just After some advice really. My DD has just had her blood taken today to be tested for diabetes. She will be 7 next week.

I’m pretty sure she has it so I’m just wondering what happens after a diagnosis? How likely am I to have to take extended time off work not just for hospital appointments? What happens with school? Will she need time off until she gets in some kind of routine? How regularly during the night will her blood sugars need checked?

I’m sure I will think of more questions, I just want to be prepared for what I feel like is the inevitable at the moment.

One of the girls in our Y4 class has just been diagnosed. She spent a bit of time in hospital initially over the summer holidays, which is when she was diagnosed, and returned to school 2 weeks into the term.
‘We had a long meeting in school with the diabetic nurse, staff and parents to draw up her Health Care plan. And 2 of our TAs have been fabulous in making sure they know all they can about her condition. The child has a device fitted linked to a mobile phone which she keeps with her, and it means she doesn’t have to have thumb pricks to test her bloods all the time. There have been a few times where her levels have been so low / high (cant recall which) and couldn’t be stabilised in school so parents have had to collect her, but these are getting much less now.

I a little surprised they had to take blood to test for type 1.
In my experience, diagnosis took 5 mins in GP surgery with a finger prick test.
Straight to hospital for inpatient stay - child did not have DKA. Insulin injections and a bit of trial and error to get the dose right. Sessions on diabetes education to show parents how to inject, test blood sugar, diet sheets, carb counting. Hospital diabetic nurses staying in touch by phone to adjust insulin doses and carbs. Gradually over time more of the decision making power transferred to parents. Option for child and parents to have sessions with hospital psychologist to get used to idea of dealing with a chronic life long illness.

Outpatient visit once a quarter. Diabetes tech introduced, first CGM or flash glucose monitor. Then pump.

Over time, it gets easier and becomes a way of life BUT very tough in the whole family, the child especially at the beginning. It is a rocky road but you get there in the end.

Good luck and fingers crossed your child avoids it.

It’s not usually a case of fake blood and wait for the results. It’s instantly detectable (there are exceptions) in a finger prick. Then it’s straight to hospital.

What are the symptoms?

Our experience was near identical to @Focalpoint above.

I honestly think that if you feel your DD has Type 1 diabetes you should be at A&E now and I’m not being dramatic.

DKA is not something to mess around with and many children end up in DKA before diagnosis.

I am also concerned that you're at home waiting for blood test results. If she has Type 1 diabetes the it's an A&E emergency.

My son had a week off school. School were very supportive but it is quite a learning curve and takes a fair bit of time. Felt a bit like having a newborn tbh.

Night time checks - your dd should get a glucose monitor (on her arm) - not sure what type they give but I think it should be able to sound alarms on her phone or yours when her blood sugar is high/low so night checks will be as needed rather than at a set time.

If you suspect diabetes go to a&e now. It's diagnosed instantly.

Try not to worry, they will teach you and her how to manage the condition, typically a few days inpatient but length varies depending on family (my friends dd was in 48 hours but he's a doctor and spotted it early, another friends dd was in 10 days but she was pretty poorly). There's the option now for continuous monitoring via smart phone and pumps now once they are stable and you are ready. School will make sure they have had suitable training ( there's likely to be other pupils unless a very small school anyway). The juvenile diabetes trust is a good source of information. But all this said, if she had bloods drawn I doubt they are thinking diabetes because that isn't sent off

As above, if suspected T1 it's a&e, not waiting for bloods from GP.

What? If a GP suspects diabetes in a child then that should be quick finger prick, result on the spot, and phonecall straight to paeds to admit that day. Waiting on results sounds horribly like they've asked for an HbA1c, which is for diagnosing type 2 diabetes, or for monitoring treatment once on insulin in type 1, it is not for diagnosing because it takes too long to change to abnormal. Another vote for A&E tonight. I've seen too many children become dangerously ill because diagnosis was delayed, and they're so much easier to treat when it's picked up before that point.

The results are processed within hours. If there concerning results, the lab phone the surgery and speak to the Duty Dr. They contact the patient immediately and send them to A&E.

The bloods were first requested as a wider range of bloods due to a symptom that could be caused by a number of things, it was requested initially just to rule it out more than anything. However over the last two weeks since I was given the appointment for the bloods I’ve noticed quite a few symptoms that either I just didn’t pick up on before because I wasn’t looking for them or I hadn’t realised could be part of diabetes.

I know one of the bloods was a random blood glucose, I’m not 100% sure what the other ones were, she had 4 lots taken in total.

I never realised that if I spotted any further symptoms then I should take her to A+E. As I hasn’t picked up on many symptoms at the time she seen the GP, i don’t think it was something she was too concerned about at that time. I will look at taking her A+E ASAP.

OP how is your daughter?

You can tell when a child or adult is in DKA,

1. By the amount of fluids they are drinking

2. Rapid......and I mean rapid weight loss.

3. Fast breathing, gasping for air - calk 999 and get paramedics.

4. breath smells sweet, like acetone or pear drops.......hated pear drops even before my diagnosis.

DKA is an absalute pain un the ass for those with diabetes on insulin.