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Worried about my son (not diagnosed)

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Missmop

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Relationship to Diabetes
Parent of person with diabetes
I am looking for support really, as I’m worried. I had GD, Type 1 is on my Mum’s side. I also am trained in diabetic care for my job as I have to look after a child with T1.

My son has been out of this world tired for week or so, drinking more, lost a bit of weight. You get the picture. Last Friday was the final straw, he was difficult to wake at 2pm, he fell back to sleep 4 times when waking him for his music lesson and he was totally out of it. So I thought right, I’ll ring the Dr for an appointment and check his blood sugar. Well I’m glad I did, it was 11. Now I know that’s not really high, but it is too high. He fluctuated between 10-11 so I have kept an eye on it. He’s been fluctuating between normal levels, as low as 4.3 to as high as 15.5. I have checked on a 2nd monitor too.

Today, I found him totally out of it, deep sleep on the floor, reading 15.5. 111 said he needs to see his GP today. GP nurse wouldn’t see him, said Friday is fine and basically in a polite way, I’m over reacting. My son was on the floor totally out of it with high BG? I don’t understand, my meter was flashing all sorts of warnings for ketones at me.

I know it probably isn’t diabetes because he is having some normal readings, which makes me glad I have been checking otherwise I may never have known. But at 15.5 should I be worried or not? 111 seem so, GP triage isn’t fussed.
 
HI,

I think you should take your son to A&E or a walk in clinic if one is available locally, this should not wait until Friday. The odd ‘good’ reading is not a sign that he does not have diabetes as in early stages of diagnosis he may still produce some insulin sporadically.

Have you made sure he has clean hands prior to testing? If so, then someone without diabetes would be very unlikely to have readings as high as 15.

How old is your son? The diagnosis pathway for a child certainly used to be a single finger prick of 11.1mmol/l (I will look this up and return With a link but cant imagine it has changed).

I don’t want to alarm you, but it would be far better to attend A&E and find everything is ok than to not attend and find it isn’t.
 
Please see NICE pathway for diagnosis of Type 1 diabetes in a child:

Diabetes | Topic | NICE

pathways.nice.org.uk pathways.nice.org.uk
In addition to the bgl he is experiencing other symptoms.

This needs to be tended to now. Waiting until Friday increases his risk of developing DKA. Please take him to walk in centre or A&E.
 
I would go to A&E, he is clearly not himself and has high blood sugar (even if not hugely high) much better to get him looked at and ketones checked etc. Hopefully A&E will be relatively quiet.
 
Unfortunately a lot of GPs (and their receptionists) are so used to dealing with type 2, and so rarely come across type 1, that they think you've got all the time in the world to diagnose it. I had the same when my daughter was diagnosed, and unfortunately at the time I didn’t know enough to argue about it. Had to wait 48 hours to see a doctor, all he did was a urine test which was apparently normal, luckily he had the sense to realise that the symptoms I was describing needed further investigation. He said it should be a fasting test (correct for diagnosing type 2 but not type 1, again I didn’t know that at the time) and the first appointment we could get for an early morning test was 5 days later. My daughter's decline had been fairly gradual until that point so again I just accepted it. When the day of the test came round she was going downhill rapidly and hardly eating anything. The next morning she could barely stand up and I had to keep carrying her to the loo “because it's too difficult to move”. The surgery opened at 8am, they rang me at 5 past and said the doctor wanted to see me again at 11. That was the longest 3 hours of my life, her fasting glucose was 18, urine now full of sugar and ketones, she was in the beginnings of DKA and probably only 24 hours away from going into a coma.

Please stand your ground - if you don’t get anywhere with the GP please take him to A&E. Good luck
 
Missmop said:
I will get on this now. I think she thought because my readings were only 8-11 when high that it was ok. The 15.5 whilst drowsy seemed lost. I’ll get him seen.
Click to expand...
Hope you get him feeling back to himself soon whatever the diagnosis. Keep us posted and all the best to you both.
 
Hi @Missmop I echo what the others have said, I think you should take your son to A&E, especially as there are keytones. GPs aren't the best in spotting type 1 as they encounter it so infrequently. The normal readings may simply indicate that his pancreas still has a bit of life left in it, especially if these readings are in the morning as the pancreas can often 'wake up' overnight. I understand that what we have all said may be worrying for you, but the sooner you go to A&E, the sooner those worries will be calmed. Take care
 
Hi @Missmop Did you take your son to hospital? How are you both?
 
Hi,

We still aren’t sure. His blood sugars are all over the place but his bloods are also pointing to another autoimmune disease. Which could be the cause of all this or it is quite common for people who have this other illness to develop type 1. We are awaiting more results. Thank you for your help. I’ll update you when we know for sure.
 
Sorry to read you still haven’t managed to get to the bottom of this - I hope your son isn’t feeling too unwell as a result.

You might also find the thread on auto-immune conditions of interest, there are a few people here with more than just diabetes and also plenty with other conditions in the family.
forum.diabetes.org.uk

Autoimmune disease in the family

Hi everyone, When I was diagnosed with LADA a year ago I was asked on more than one occasion whether I had Diabetes in my family. I have a very distant cousin on my mums side diagnosed as a child with type 1. Apart from that I don’t know of any other family members with T1. When I looked into...
forum.diabetes.org.uk forum.diabetes.org.uk

Thanks for the update @Missmop I really hope you and your boy get some answers and relief from his symptoms soon.
 
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