• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • Screening for type 1 diabetes: We now have a new forum section which is for parents who, after having their child screened for type 1, have received a positive result that at some stage their child will be diagnosed with type 1 diabetes. Where possible, please do offer your support and experiences of having a child diagnosed. https://forum.diabetes.org.uk/boards/forums/screening-for-type-1-community-chat.59/
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

Very worried - 20 month old

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
E

ElizaRose

New Member
Relationship to Diabetes
Type 1
hi
I am type 1 and my dad is also a type 1 (LADA). I have two children and I periodically check them because I'm aware of the increased risk.
A couple of weeks ago I picked my daughter up at a 9.2 after she had eaten something quite sweet. It was about half an hour after eating the food and by an hour she was back at 5.5.
I spoke to the GP who wasn't concerned but advised me to check her fasting sugar which I have a few times and they have all been fine - between 4.3 and 4.8.

However I checked her this evening because I'd read around and the advice seems to be sugars are more of an issue in the evening than the morning as the pancreas recovers overnight and she was 8.5 after her milk. Around an hour after. Two hours after and she is 4.9.

But I think this seems abnormally high. The formula milk does have 15g of glucose in it (who knew it was so sweet!) but even so. I will admit to checking her several times over the last week and all other sugars have been fine, even if she has had apple juice or an ice cream she has remained below 7mmol all the time and generally around 5mmol.
She isn't symptomatic.

Any advice? Wait and see? Go back to the GP? They won't be able to do anything will they? Not yet. I'm certain she isn't unwell and doesn't have any other reason for her sugars to be elevated. If I wasn't type 1 myself I'd be blissfully unaware anything was wrong. I wish I was. It's casting a huge shadow over every day at the moment, I feel like im awaiting the inevitable. With my dad being type 1 I hoped it would then stop with me as I know the risk is higher with a type 1 dad than I type 1 mum. I'm not sure how having two prior generations of type 1 stacks the odds. Not in our favour it would seem.

I'm very very upset. We had such a struggle having her and she was prem and ill when born and to overcome that only for this breaks my heart.
 
Welcome to the forum, ElizaRose.
You've said the key words "She isn't symptomatic." So, without any of the "4 Ts - toilet, thirsty, tired, thinner", there's no need to take action regarding type 1 diabetes now. Of course, if she hs any of those symptoms or any other worrying symptoms, then your should seek appropriate medical advice from pharmacist / GP / ambulance / A&E etc.
More details here: https://www.diabetes.org.uk/the4ts

Also, remember that blood tests on fingers can give higher readings if there's sugary residue on fingers. Even if you're checking heels or earlobes, children can get food everywhere!
 
ElizaRose said:
hi
I am type 1 and my dad is also a type 1 (LADA). I have two children and I periodically check them because I'm aware of the increased risk.
A couple of weeks ago I picked my daughter up at a 9.2 after she had eaten something quite sweet. It was about half an hour after eating the food and by an hour she was back at 5.5.
I spoke to the GP who wasn't concerned but advised me to check her fasting sugar which I have a few times and they have all been fine - between 4.3 and 4.8.

However I checked her this evening because I'd read around and the advice seems to be sugars are more of an issue in the evening than the morning as the pancreas recovers overnight and she was 8.5 after her milk. Around an hour after. Two hours after and she is 4.9.

But I think this seems abnormally high. The formula milk does have 15g of glucose in it (who knew it was so sweet!) but even so. I will admit to checking her several times over the last week and all other sugars have been fine, even if she has had apple juice or an ice cream she has remained below 7mmol all the time and generally around 5mmol.
She isn't symptomatic.

Any advice? Wait and see? Go back to the GP? They won't be able to do anything will they? Not yet. I'm certain she isn't unwell and doesn't have any other reason for her sugars to be elevated. If I wasn't type 1 myself I'd be blissfully unaware anything was wrong. I wish I was. It's casting a huge shadow over every day at the moment, I feel like im awaiting the inevitable. With my dad being type 1 I hoped it would then stop with me as I know the risk is higher with a type 1 dad than I type 1 mum. I'm not sure how having two prior generations of type 1 stacks the odds. Not in our favour it would seem.

I'm very very upset. We had such a struggle having her and she was prem and ill when born and to overcome that only for this breaks my heart.
Click to expand...

Hi ElizaRose,

I think your baby is so precious to you that it's hard for your fear of diabetes not to kick in and make you think more with your heart than your head. It's totally understandable but her insulin response sounds excellent and the odd test too soon after a sweet meal isn't accurate enough to make any judgements on. Many non diabetics can very temporarily rise high but her recovery was rapid and she's usually in the normal range.
As Copepod has said, the key thing is she's non symptomatic, really well and thriving after being a prem baby. You know the diabetic signs and she doesn't have any. There's no certainty she ever will. She sounds adorable!
You'll watch her carefully anyway but don't let these fears dominate because it's a special time and you have much nicer things to be doing with her than stressing over this. If there was anything genuinely amiss, you'd know but there isn't.

Put your fears away because you know she's absolutely fine as reassured by your doctor. You'll be pushing your own levels up at this rate! 😱

Best Wishes. Amigo
 
It's good the GP says she is ok and hopefully she won't become diabetic. I know you will be watching and any signs you would take action.
It sounds like you need extra support, you have been through so much and now have understandable fear which is affecting your daily well being. After all the worry and stress of her being ill at birth, plus your diabetes worries, you may need some extra support. Can you see someone professional, just a suggestion. Sending all my support and do come back here and share how you are.
 
Hi
Thanks. No she isn't symptomatic. It just seems rare for people who are truly 'normal' to go over 7.8mmol. She definitely did not have sugar on her fingers at the time... she does drop back down quickly, it's just the spikes seem quite high.
I know I just have to wait and see but it's difficult when I'm so worried.
 
Welcome Eliza.

The important thing is that her pancreas is behaving very well. Any time she has carbs the pancreas is sorting this out and bringing her nicely back in target, just like it should.

As others have said, you know what to watch for and if she developed T1 you would be quick t spot any of the 4ts. She is asymptomatic so give her a hug instead of a blood test and enjoy the bundle that you have made through thick and thin.
 
ElizaRose said:
Hi
Thanks. No she isn't symptomatic. It just seems rare for people who are truly 'normal' to go over 7.8mmol. She definitely did not have sugar on her fingers at the time... she does drop back down quickly, it's just the spikes seem quite high.
I know I just have to wait and see but it's difficult when I'm so worried.
Click to expand...

The saddest sentence in your post ElizaRose is when you say it's casting a shadow over every day. The problem is, when we adopt an anticipatory worry, it's hard to shift it but the important thing is to learn to rationalise it and not let it overshadow the good. I'm not trying to throw patronising platitudes at you but this saying is so relevant;

'Worry never robs tomorrow of its sorrow, it only saps today of its joy!'

Your lovely daughter seems to me to have a perfectly stable, well functioning insulin response to food. Ok she's had a few high blips but it really isn't as unusual as you think. I know of loads of non diabetic people who hit high spikes but the key and vital issue is their bodies compensate very rapidly and bring it down. Just as it did with your daughter.
I can recall a diabetic friend of mine who is type ll testing all his non diabetic family a while after Christmas lunch. They were all off the scale but recovered pretty rapidly. The difference is, his levels took much, much longer to stabilise and he doesn't run at about 5 like your daughter each day. How many type 1 diabetics do you know who maintain your daughter's excellent levels with no symptoms? You are wise to be watchful but hurting yourself by being over anxious.

You can't prevent the inevitable because our kids can get things we would never want for them and your experience of diabetes in the family intensifies that fear. There's absolutely no certainty that your daughter will be affected but you've battled to have her and battled to get her through from her premature birth. You'll deal with whatever is thrown at you but don't sit waiting for things to happen. Ten years from now you'll kick yourself for it. Best wishes.








 
I know there is nothing I can do to change it if it is type 1. I'm struggling to put it out of my mind.

A 9.2 and 8.5 do not seem like normal sugars. Especially since the 8.5 was only after her formula milk. Yes they are currently coming back down but I think the first thing that goes is the phase 1 insulin. Clearly she's not at a level where she could take insulin yet but how quickly it deteriorates I don't know. Weeks? Months? Longer? I don't know.
 
Picture a normal fit person, What do you think would happen to a person who started eating Mars bars.Bg would go up. We are not in the same place as you & not Drs. Really good luck & keep an eye out 🙂
 
Thank you.
I keep praying and praying she won't be diabetic.
But I still don't think it's normal for these sorts of spikes.
 
I don't think anyone is going to be able to reassure you really. I'd keep an eye on things and ask your GP to test her if you are still worried. As you say, it may happen but not for years but it may never happen at all. It's hard to know whether it's instinct you're feeling or over anxiety about the possibility. I can only wish you well because it must be very worrying.
 
((Hugs)) this anxiety isn't good for any of you. I understand about the worry of your daughter getting it but you need to be careful you don't pass your anxiety onto her.
I had prem twins who were very poorly when born and in nicu until their due date and used to worry about their health constantly when they were young. In the end I sought help and had counseling and was on sertraline to help with my anxiety. When you have had a problematic pregnancy, traumatic birth and baby in nicu with medical problems you can suffer with Post traumatic stress disorder. I believe I had this and felt a lot less anxious after getting help. Of course on top of this you are worried about the diabetes. Have you spoken to anyone about how you feel?
 
I think if I hadn't had those high sugars I wouldn't be as concerned.
I know non diabetic people can go out of range but it seems rare and only after eating very sweet things. I wasn't as concerned after the fruit as that was sweet. The 8.5 after the milk worries me more.
 
ElizaRose said:
I think if I hadn't had those high sugars I wouldn't be as concerned.
I know non diabetic people can go out of range but it seems rare and only after eating very sweet things. I wasn't as concerned after the fruit as that was sweet. The 8.5 after the milk worries me more.
Click to expand...

Do you have a Health Visitor you could have a chat with?
 
Yes I could contact them but they won't help re the diabetes side will they? They won't be specialist enough.
The GP could refer for a GAD test to check for antibodies but I don't know if they would. They don't seem too worried until you are into dka.
 
It all sounds very scary and don't know that we can give you reassurance you need. I agree with @Lucy Honeychurch and think it is hard for you now to see you could do with someone to talk to.
I also see that the GAD test is what you are looking for but no idea if you can get one.
sending hugs to you.
 
ElizaRose said:
Yes I could contact them but they won't help re the diabetes side will they? They won't be specialist enough.
The GP could refer for a GAD test to check for antibodies but I don't know if they would. They don't seem too worried until you are into dka.
Click to expand...

I don't think your GP would agree at the moment because there's little compelling evidence to do so. A couple of errant levels amongst general stable levels wouldn't convince him. I honestly don't think anything needs doing presently but I'm pretty sure you are going to continue testing her.

I have an autistic son and usually end up paying privately for him to see specialists. A private paediatrician is an option but in honesty I'd be reluctant to encourage what could simply be over anxiety at the moment Eliza. I'm honestly not dismissing your concerns for a moment but you know that she's not displaying any symptoms whatsoever presently.

You will no doubt continue to monitor because concern will compel you to. What does your partner or family think? Do you feel people are merely dismissing your concerns?
 
New-journey said:
It all sounds very scary and don't know that we can give you reassurance you need. I agree with @Lucy Honeychurch and think it is hard for you now to see you could do with someone to talk to.
I also see that the GAD test is what you are looking for but no idea if you can get one.
sending hugs to you.
Click to expand...
Health visitors are well placed to help mothers of premature babies, mothers anxious about health problems in babies etc, so do share your feelings with your health visitor. They also have access to other sources of advice, so can take your details and find answers on your behalf.
 
Yes I do feel my concerns are being dismissed a bit. I recognise that right now no one could do anything for her as her levels aren't at a high enough level. But I do feel they also aren't completely normal so I don't know where to go from here.
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top