Looking for some guidance and questions to ask

[redding43]

Hi all, I'm a dad of a 2 1/2 yr old little girl who was diagnosed last week with T1

Long story short. Our daughter stopped eating for a few days, we put it down to a toddler tantrum at the time but took her to the doctors to check her out as she had had tonsillitis before and we wondered if it had come back. Other than not eating and being a little tired there was no other outward signs. A week or so precious to this she had been unwell with an episode of bad stomach and two instances of night sickness.

Anyway, a routine urine test highlighted ketones so we were whisked off to hospital where it was found she had high blood sugar and a diagnosis was made.

They put her on novorapid (1) before every meal and also another insulin (forgot the name - begins with an L) before bed. Over the next few days she had Hypos in the morning with Blood Sugar of about 3.5 and generally low in the day. We were advised to stop the injection completely before she went to bed and drop the dose for Novorapid to 0.5 before each meal.

We are now seeing an occasional hypo in the morning, the latest one being 3.5, and then throughout the day a constant 4.5-6 level

I have a question that I can't seem to get a straight answer on and that is, how are they absolutely sure she has diabetes and not some other cause, temporary or not, causing the issue that drove us to hospital?

I know the reality is that they are probably correct but the combination of the minuscule amount of insulin she is on now combined with the fact that this decision influences her future life I feel it is wrong for me to simply forget about my concerns.

I would welcome any thoughts

 

[azure]

As a parent you should always make your concerns known to doctors, if only for your own peace of mind.

But there are diagnostic criteria for diabetes:

http://www.diabetes.org.uk/About_us...itoring/New_diagnostic_criteria_for_diabetes/

Your daughter is only young so she would only be on a tiny dose of insulin anyway. Also, there is something called the Honeymoon Period, where going on insulin allows the body's own islet cells to rest a little and they can still then make some insulin of their own, which means your daughter wouldnt need so much in injections. I found this when I was first diagnosed. Now, years later, my insulin needs have increased a lot.

Also, it does take a while to get the correct dose of insulin, so the adjustments that are being made are in response to your daughter's results, not necessarily because of a fault in diagnosis or treatment.

Keep in close contact with her team and raise any concerns you have about her. Also, test her blood sugar frequently to give the best information.

Good luck

 

[Daibell]

Hi. It is unlikely that the diagnosis is wrong but possible. There are things such as illness that can cause raised blood sugar but it sounds like her sugar was a lot higher than illness might cause. At the end of that day if the insulin needed to keep her blood sugar in the right range becomes near zero then perhaps it wasn't diabetes but the insulin won't have done any harm. Keep checking with the meter and discuss any changes of insulin with the nurse. If you find her blood sugar stays fine without any insulin then you know it was a temporary problem but keep in touch with the nurse.

 

[redding43]

Thanks both

 

[redding43]

So.....we found out today that the hospital did not carry out the full set of tests and a core one is missing and needs to be done. They still feel she is diabetic but having seen her blood sugar levels since being diagnosed there was obvious surprise that they have remained so low and controlled with the minuscule insulin she is being injected with.

Clearly this is all a lot of wishful thinking but until we have the final findings we will not rest....

 

[SueB743]

Just wanted to say welcome to the forum and send my best wishes for your little girl. Hope she is doing ok

 

[redding43]

So....we went to the hospital today for the first checkup.

They carried out the HbA1c blood test and checked the results of her blood sugars over the last month and are now questioning whether she has Type 1 diabetes at all!

They took further tests and we have to wait another 2 weeks for the results but in the doctors words 'strongly suspect the test will come back normal'.

If this is the case the next is a genetic test for a couple of more rare illnesses that have the same symptoms as Type1 (eg MODY). If these are negative then I suspect they will put it down to a 'blip'

In the meantime we stop the insulin injections and monitor her blood sugars only. Only taking action if their is a sustained period of them being high.

Watch this space....

 

[satindoll]

Keeping all crossed for your little lady, wouldn't be the first time a mistake has been made but at least its in her favour we hope.

 

[kateincornwall]

Just wishing you and yours well , hoping that she will get a diagnosis that is definite, and then you can all move forward, knowing whatever you have ahead .

 

[SueB743]

Hope they get to the bottom of this soon. Best wishes

 

[redding43]

Just thought I would check in. Our daughter is still off of insulin and only having prick tests once a day now, all is normal. Still no idea what caused the problems that created the initial type 1 diagnosis but for now all appears fine

 

[Daffodils1]

That's wonderful, what good news.

All the very best.