New and Scared of what's to come

[Kirsty Ainley]

Hello

We probably shouldn't be here as we still have not been diagnosed but Doctors have asked me to monitor blood sugars and ketones.

So here is a little back ground. My poor baby (she's 2) stated having "floppy episodes" 8 months ago. She gets so exhausted she can move her arms and legs and goes floppy! I have been fighting since February this year to find someone who will listen and take me seriously. My daughter has other problems such as weight loss and she gets poorly very easy.

After 8 months of desperately fighting for her we finally have a doctor who is listening. It only took her being rushed to hospital with a blood sugar of 2.2 and me refusing to leave until the paediatric doctors seen her!

Since discharge we were back at A&E with her blood sugars of 3.5 and ketones were 3.1. This was put down to her not eating well because she had chicken pox and they were in her mouth.

The smell on her breath when her ketones are raised is awful. It smells like acetone and it's so strong!

I am sorry for the long post I am a little scared about what's going to happen. I seem to be on edge all the time watching her and smelling her breath. She is also a diva when it comes to food. Some times she's eats very well others she treats food like it's poisen. I hate labling her as fussy as she does eat a wide variety of food with plenty of fruit and veg! I will leave it there, thank you for listening/reading.

 

[Bill Stewardson]

Hello to you Kirsty and a very warm welcome to the forum.

You sound like a super mum to me !! You have finally found a Dr who is on your side which means the ball is rolling in the right directions.

You say your scared of what's going to happen which I can well understand, what's actually going to happen is the process that you started at A&E will continue, and the clinicians will unearth the causes which will trigger the improvements you and your family are looking for.

It may not be instant, your determination is already starting to pay off, time will fetch with it an upward curve.

Everyone in here is on your side, please stay in touch and keep us up to date, you will receive lots of good advice.

Thanks for posting.

 

[khskel]

Good luck.

 

[Kirsty Ainley]

Thank you so much for your reply. We are waiting on our appointment with the new consultant in the next 6 to 8 weeks. We also have to have some investigation to determine why her soft spot hasn't closed. Apparently it should have by now. Her head xray shows it is still very much open.

 

[Copepod]

Welcome to the forum, Kirsty Ainley, but sorry you have to be here.
You're right that your daughter has unusual blood glucose and ketone levels. It is unlikely to be type 1 diabetes, as low blood glucose levels (below 4mmol/l) usually happen only when too much insulin / not enough food / too much exercise is taken.
How is her mouth now? Have all the chicken pox sores healed yet? That may make food choice easier, but if they haven't healed, then avoiding acidic and salty foods may avoid some discomfort.
I hope you and your medical team can find some answers and solutions for your daughter.

 

[Kirsty Ainley]

Her mouth is much better now but we are having a diva day! Her favourite breakfast of cheese on toast is poisonous today! She is so underweight it scares me to look at her! Her younger sister, who is 1 weighs more than she does. She weighs under 10kg (21lb ish I think) at age 2.
I am not sure anyone knows what's going on with her. We have seen the endocrinologist briefly and he has thrown some ideas about diabetes or something called ketotic hypoglycemaemia.
I joined after the reading the 4 Ts as she can put a tick in each of the boxes however her sugars are not consistenton t1 diabetes. I am not sure what to think. The poor thing is lay on the sofa exhausted at the moment despite a 12 hour sleep last night! I might have to do her blood sugar soon if she doesn't pick up!

 

[Radders]

I am so sorry to hear that you and your daughter are going through this. I think, but stand ready to be corrected, that Ketotic hypoglycaemia might just be the description of the symptoms your daughter is experiencing, i.e. Ketones and hypoglycaemia, rather than a specific condition.

 

[Kirsty Ainley]

Radders I am not 100% sure myself, we saw the endocrinologist while we were in the hospital and he said it could be this which was a form of accelerated fasting???? They could be the same thing or they could be completely different or as you said, a way of describing symptoms. She was monitored for 24 hours and he blood sugars stayed around 4.6 so they were happy and the endocrinologist never came back!
Sometimes I think am I imagining it! Then she has a dodgy blood sugar and I wonder what the heck is going on.
If it was t1 diabetes who her blood sugars be consistently high?

 

[Radders]

Radders I am not 100% sure myself, we saw the endocrinologist while we were in the hospital and he said it could be this which was a form of accelerated fasting???? They could be the same thing or they could be completely different or as you said, a way of describing symptoms. She was monitored for 24 hours and he blood sugars stayed around 4.6 so they were happy and the endocrinologist never came back!
Sometimes I think am I imagining it! Then she has a dodgy blood sugar and I wonder what the heck is going on.
If it was t1 diabetes who her blood sugars be consistently high?

It's so frustrating when that happens: symptoms that hide from medical people. You're right that low blood sugar is not a symptom of type 1 diabetes. I hope you get some answers soon.

 

[angelajames]

Hello

We probably shouldn't be here as we still have not been diagnosed but Doctors have asked me to monitor blood sugars and ketones.

So here is a little back ground. My poor baby (she's 2) stated having "floppy episodes" 8 months ago. She gets so exhausted she can move her arms and legs and goes floppy! I have been fighting since February this year to find someone who will listen and take me seriously. My daughter has other problems such as weight loss and she gets poorly very easy.

After 8 months of desperately fighting for her we finally have a doctor who is listening. It only took her being rushed to hospital with a blood sugar of 2.2 and me refusing to leave until the paediatric doctors seen her!

Since discharge we were back at A&E with her blood sugars of 3.5 and ketones were 3.1. This was put down to her not eating well because she had chicken pox and they were in her mouth.

The smell on her breath when her ketones are raised is awful. It smells like acetone and it's so strong!

I am sorry for the long post I am a little scared about what's going to happen. I seem to be on edge all the time watching her and smelling her breath. She is also a diva when it comes to food. Some times she's eats very well others she treats food like it's poisen. I hate labling her as fussy as she does eat a wide variety of food with plenty of fruit and veg! I will leave it there, thank you for listening/reading.

ley, post: 749411, member: 19600"]Hello

We probably shouldn't be here as we still have not been diagnosed but Doctors have asked me to monitor blood sugars and ketones.

So here is a little back ground. My poor baby (she's 2) stated having "floppy episodes" 8 months ago. She gets so exhausted she can move her arms and legs and goes floppy! I have been fighting since February this year to find someone who will listen and take me seriously. My daughter has other problems such as weight loss and she gets poorly very easy.

After 8 months of desperately fighting for her we finally have a doctor who is listening. It only took her being rushed to hospital with a blood sugar of 2.2 and me refusing to leave until the paediatric doctors seen her!

Since discharge we were back at A&E with her blood sugars of 3.5 and ketones were 3.1. This was put down to her not eating well because she had chicken pox and they were in her mouth.

The smell on her breath when her ketones are raised is awful. It smells like acetone and it's so strong!

I am sorry for the long post I am a little scared about what's going to happen. I seem to be on edge all the time watching her and smelling her breath. She is also a diva when it comes to food. Some times she's eats very well others she treats food like it's poisen. I hate labling her as fussy as she does eat a wide variety of food with plenty of fruit and veg! I will leave it there, thank you for listening/reading.[/QUOTE]
Omg my heart goes out to you and your family, I only found out on Friday that my son has diabetes and he is in his 20s. My whole family wish you all the best, and strength in knowing that no one knows your children better than you, all they know is how to treat. Keep shouting x

 

[Ditto]

Hello and welcome to the forum Kirsty. Sorry you have to join us though (((hugs)))