Yikes! So much to learn, would love some advice :)

[Kayleigh1008]

Hi there,

Well when I signed up to this forum to ask for help for my type 2 Husband I never knew a year later our little 7 year old boy would be diagnosed with type 1. I have to say that this has been such a hard and tough 2 weeks for us all, the person seeming to cope the best is little Finley himself. He has learnt all the terminology, setting up his injections with ease, testing his own blood sugar and just being a rock star with it all. He has Aspergers too but I think this is to his advantage as it has become part of his new routine and he is wanting to learn all he can about his new condition.

Unfortunately our consultant is not the most helpful of people and the appointments we have attended we leave with more questions than we had going in!

Finley's numbers are still a little all over the place, we are carb counting and his ratio is currently 1:15. He is taking tresiba as his long acting insulin at night. My worry is that at night he will sometimes be going to bed at 12 but waking up at 5? My worry is that once we can get his numbers 'normal' and he goes to bed on a 7/8 will he start to fall almost to a 2/3 overnight? He is wearing a dexcom and his numbers from about 3am seem to start to fall.

I also am trying to find an answer to a question I can't seem to get an answer too online? The hormone that say I produce to ensure my blood sugar doesnt fall and I don't go into Hypoglycemia does Finley still produce this and its simply too much Insulin that can send him Hypo or has his pancreas stopped producing this altogether? He doesn't seem to recognise Hypos as yet, he knows what he should feel but its such early days and we usually catch them before he can potentially experience it fully.

Thank you so much for reading, I probably have so many more questions, I really appreciate your time x

 

[urbanracer]

When T1'S are first diagnosed they often enter what's called the "honeymoon phase". Injecting Insulin relieves the pancreas and it starts to sporadically produce a little insulin. It's not possible to say when this will happen and so management of glucose levels becomes tricky.

There is no telling how long the honeymoon will last but could be anything from a few weeks to a few months. Once the honeymoon ends, you will hopefully find that his glucose levels settle down and become easier to manage.

There is (to the best of my knowledge) no hormone that prevents your glucose levels from falling. In a normally healthy person the body performs a remarkable balancing act, producing exactly the amount of insulin you need at any given time to keep your blood sugars on an even keel.

 

[Marie 2]

Yes, it's very tricky at first. In the honeymoon phase you are still producing insulin until you're not. So you have to go easy at first because insulin forces your blood sugar down and too much, you will drop too low and it can be dangerous. So you have to learn what works and it will keep changing over some period of time.

You can get an emergency glycogen shot to keep on hand in case of a really bad low.

In a child generally it develops over weeks to months, in an adult it takes months to years. Generally it's a gene we inherit that makes us susceptible to type 1. As an adult when we get it, it is usually called LADA and is a much slower developing type 1. We are often misdiagnosed as type 2's because it isn't so obvious. I am saying this because I would be watchful of your husbands diagnosis as a type 2. Type 1 and type 2 are different conditions, type 2 is insulin resistant and type 1 is autoimmune.

 

[Severe_Needle_phobia]

Hi there,

Well when I signed up to this forum to ask for help for my type 2 Husband I never knew a year later our little 7 year old boy would be diagnosed with type 1. I have to say that this has been such a hard and tough 2 weeks for us all, the person seeming to cope the best is little Finley himself. He has learnt all the terminology, setting up his injections with ease, testing his own blood sugar and just being a rock star with it all. He has Aspergers too but I think this is to his advantage as it has become part of his new routine and he is wanting to learn all he can about his new condition.

Unfortunately our consultant is not the most helpful of people and the appointments we have attended we leave with more questions than we had going in!

Finley's numbers are still a little all over the place, we are carb counting and his ratio is currently 1:15. He is taking tresiba as his long acting insulin at night. My worry is that at night he will sometimes be going to bed at 12 but waking up at 5? My worry is that once we can get his numbers 'normal' and he goes to bed on a 7/8 will he start to fall almost to a 2/3 overnight? He is wearing a dexcom and his numbers from about 3am seem to start to fall.

I also am trying to find an answer to a question I can't seem to get an answer too online? The hormone that say I produce to ensure my blood sugar doesnt fall and I don't go into Hypoglycemia does Finley still produce this and its simply too much Insulin that can send him Hypo or has his pancreas stopped producing this altogether? He doesn't seem to recognise Hypos as yet, he knows what he should feel but its such early days and we usually catch them before he can potentially experience it fully.

Thank you so much for reading, I probably have so many more questions, I really appreciate your time x

Hi there,

Well when I signed up to this forum to ask for help for my type 2 Husband I never knew a year later our little 7 year old boy would be diagnosed with type 1. I have to say that this has been such a hard and tough 2 weeks for us all, the person seeming to cope the best is little Finley himself. He has learnt all the terminology, setting up his injections with ease, testing his own blood sugar and just being a rock star with it all. He has Aspergers too but I think this is to his advantage as it has become part of his new routine and he is wanting to learn all he can about his new condition.

Unfortunately our consultant is not the most helpful of people and the appointments we have attended we leave with more questions than we had going in!

Finley's numbers are still a little all over the place, we are carb counting and his ratio is currently 1:15. He is taking tresiba as his long acting insulin at night. My worry is that at night he will sometimes be going to bed at 12 but waking up at 5? My worry is that once we can get his numbers 'normal' and he goes to bed on a 7/8 will he start to fall almost to a 2/3 overnight? He is wearing a dexcom and his numbers from about 3am seem to start to fall.

I also am trying to find an answer to a question I can't seem to get an answer too online? The hormone that say I produce to ensure my blood sugar doesnt fall and I don't go into Hypoglycemia does Finley still produce this and its simply too much Insulin that can send him Hypo or has his pancreas stopped producing this altogether? He doesn't seem to recognise Hypos as yet, he knows what he should feel but its such early days and we usually catch them before he can potentially experience it fully.

Thank you so much for reading, I probably have so many more questions, I really appreciate your time x

Hi @Kayleigh1008
Warm welcome to the forum.
I wish Finley well on his journey..

 

[kitedoc]

Hi @Kayleigh1008, Welcome to the club as a patent, carer and dynamic force in the universe and your family.
As a TID, not as health professional advice or opinion:
Please look at the Home page under Living With Diabetes in the middle of the horizontal menu bar, to see things about acceptable blood sugar levels (BSLs) for Type 1 and Type 2 diabetes. Plus pls see a section on hypoglycaemia hypo- low, -glyc- = glucose, -aemia = in the blood, or 'hypo' for short.
Also under Type 1 and under Type 2 on the horizontal menu again you can see the range of diets used with each type of diabetes.
The NICE guidelines which are a UK standard of medical care based on evidence have recently denoted the low carb diet as the 'best in class', so to speak, of diets for Type 2 diabetes.
Still nothing definite on the NICE guidelines for Type I diabetes diet-wise but each diet can involve carb couting and in interests of considering all the options please include a journey on the internet to type 1 true grit website.
For your hubbie, if interested, reading Dr Bernstein's Diabetes Solution will get him full bottle on low carb diet.
As a type 1 on insulin now for 52 years please let Finley know that he has a bright future, especially with all the improvements in diabetes in the past 50 years!
As i think you are inferring the risk of hypos in young children is worrying.. If your son's doctor was perhaps more switched on things like the pros and cons of insulin pumps, the use of continuous glucose monitoring could be raised in this regard as potential hedges against occurrence of hypos and there is no reason not to read up about them and try to get an answer, and standing firm until you have one. Consultants have a duty of care as does every doctor, nurse and other healthcare worker to give you unbiased, truthful and full information so that as parents and patients you receive the best information with which to make decisions.
You may wish to also use the question box, upper screen of either the Home or Forum page to look up 'DCCT', not the dcct which is about units of a laboratory test but about the Diabetes Control and Complications Trial and, to a lesser degree for now, the follow up EDIC study. This information will help inform you about the vital importance for Finley to able to achieve the best possible control if BSLs in thr next 6 1/2 years, if you wish as patents to interpret the trials findings that way.
A clue to this is looking at drludwig.blog, about a survey of diabetic children and adults through Boston Children's Hospital and the results for HBAIC ( blood test of bsl type average over previous 3 months) and showing very low frequency of hypos)
Please PM if you wish to know more.
Best Wishes
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