Type 1 Is there a way to evaluate how severe is the brain damage caused by a triggered hypoglycemia

[enzo233]

My 1 year old daughter was diagnosed with type1 diabetes last month.
As many of young type1 diabetes patients, she wasn't being able to be diagnosed at the first place and suffered very severe DKA.
After luckily bring my little angel back from PICU, I tried to plan her some healthy daily diet by myself.
I did some research, from internet articels and books, I weight every single food she has, input them into excel, calculate carefully, just to make sure she gets 900kcals of energy each day while the proteins are under 20%.
Frustratingly, in the past month I did a terrible job, her blood sugar is still very uncontrolled now. After a 2-3 days of continuous high blood sugar（above 15 mmol/l），I thought that maybe I should add some insulins. So I started to give her 4 units instead of 3-3.5 units before every meal.
One day after I adjust the amount, about 2:30 pm in the afternoon, on our way to see doctor for a hospital examination， I saw my daughter suddenly sweated profusely, like she is melting. I realised that she might was having a hypo cause I heard that from doctors several times , who told me to AVOID hypo in any cases.
So I cancelled the appointment immediately and head back home, hoping that she was merely feeling too warm in the vehicle.
It took us about 1 hour to get back home, unfortunately, her blood sugar was 2.2 mmol/l. I let her drink some sugar melted in water, after 20mins her blood sugar was 3.7mmol/l.
I hate myself so much for the decision I made to adjust the insulin amount, a far more conservative insulin plan was implied on her now.
So, how much chance is the permanent brain damage take place after a 2.2 hypo? Is brain damage a certain result of hypoglycemia?
s

 

[xfieldok]

I would say the chances of brain damage are pretty much zero. I suggest you ask your health care professionals for advice on diet and insulin.

 

[The Pirate Twins]

Many long term T1 can and have dropped to levels round 2.2 or lower and so far no brain damage has been found.
While Dr Google can be interesting it can also be misleading and it many cases wrong.

But as the other poster has suggested talking with your health care professionals could be helpful.

 

[Antje77]

Brain damage from a 2.2 hypo seems very unlikely to me, it's just something that happens on insulin.

If you ever suspect a hypo again, please test and treat immediately! Make sure to always carry meter and hypo treatment.
Next time, you can just treat then and there, no need to go back home!

Are you looking at the carbohydrates as well? They are more important than exact calories or percentage of proteïn. The amount of carbs is what the insulin dose will be based on in the future, instead of having fixed doses regardless of the meal.
She may be more or less hungry on different days (I know I am) so eating the exact same amount of calories every day doesn't really make sense and isn't necessary for good diabetes control.

Take your time, there's a lot of new things to learn for you, and it can't be all learned in a couple of weeks. That's perfectly fine.
Good luck!

 

[ickihun]

You are doing a fantastic job. I really admire your diligence.
Your baby is sooo lucky to hv a brilliant mum.
Make sure to build up a good circle of compassionate friends, maybe one one day will feel confident enough to also give such good care and allow you a break from it all. Even once a year gives you that breather to regain your strength to manage the diabetes, at such a great level. Keep it in mind. Train someone you trust to be as good. They will pan out invaluable.

 

[Circuspony]

Have your diabetes team taught you to match the insulin dosage to the carbohydrates you are feeding?

It is worth keeping a diary. Take her BG level just before eating. Note down exactly what's she's having and take BG 2 hours later. Even the same food at different times of the day can give different results - & that's important info for the diabetes team.

Don't beat yourself up over the hypo. Little cartons of fruit juice are good to keep in the car if it happens again - which it will. Hypos are an annoying part of diabetic life but you will learn to recognise the signs. The quicker you treat the better.

 

[porl69]

@enzo233 I toff my hat to you. Dealing with type 1 is pretty difficult as an adult, to be doing it for a 1 year old is, in my books, amazing.
As a type 1 we get hypos! They are part and parcel of being type 1! Do NOT beat yourself up over these hypos at all. What you need to be doing is asking yourself why it happened, and learn from your mistakes. You will never be perfect controlling it.
Have hypo treatments with you at all times. Have a word with your diabetes team about them as well.
Pretty sure no ill effects will come to your daughter with a 2.2 hyo

 

[Robinredbreast]

Hi @enzo233 and welcome to the forum, I am so sorry that you and your baby are here, but it will get better in time and the children are tough little cookies.
I would imagine you are anxious regarding your small baby with type 1 diagnosis and it's understandable ( my granddaughter was diagnosed with type 1 at 2 1/2 years and I remember how worried and anxious I felt)
Hypo's happen, but as long as you are prepared, having hypo treatments handy at home or away, glucose testing machine etc and to keep calm, counting to 10 and breathing slowly will help.
You are doing a fantastic job already and it will get easier in time.
Take care and wishing you and your baby, a happy and a healthy Christmas x

 

[enzo233]

I would say the chances of brain damage are pretty much zero. I suggest you ask your health care professionals for advice on diet and insulin.

Thank you so much for your reply, really give me a relief.
Analyzing the fact by my self is one thing, but hearing it from a nice people like you in person is a whole diffrent thing. MERRY CHRISTMAS to you and yours!

 

[enzo233]

Many long term T1 can and have dropped to levels round 2.2 or lower and so far no brain damage has been found.
While Dr Google can be interesting it can also be misleading and it many cases wrong.

But as the other poster has suggested talking with your health care professionals could be helpful.

I told my daughter's doc about that, he said it was very dangrous and might have potential damage. I understand that a doctor has always keep his words rigorous and accurate，it's not his job just to comfort me, and indeed, I have to keep myself in vigilance to hypo.

 

[NicoleC1971]

My 1 year old daughter was diagnosed with type1 diabetes last month.
As many of young type1 diabetes patients, she wasn't being able to be diagnosed at the first place and suffered very severe DKA.
After luckily bring my little angel back from PICU, I tried to plan her some healthy daily diet by myself.
I did some research, from internet articels and books, I weight every single food she has, input them into excel, calculate carefully, just to make sure she gets 900kcals of energy each day while the proteins are under 20%.
Frustratingly, in the past month I did a terrible job, her blood sugar is still very uncontrolled now. After a 2-3 days of continuous high blood sugar（above 15 mmol/l），I thought that maybe I should add some insulins. So I started to give her 4 units instead of 3-3.5 units before every meal.
One day after I adjust the amount, about 2:30 pm in the afternoon, on our way to see doctor for a hospital examination， I saw my daughter suddenly sweated profusely, like she is melting. I realised that she might was having a hypo cause I heard that from doctors several times , who told me to AVOID hypo in any cases.
So I cancelled the appointment immediately and head back home, hoping that she was merely feeling too warm in the vehicle.
It took us about 1 hour to get back home, unfortunately, her blood sugar was 2.2 mmol/l. I let her drink some sugar melted in water, after 20mins her blood sugar was 3.7mmol/l.
I hate myself so much for the decision I made to adjust the insulin amount, a far more conservative insulin plan was implied on her now.
So, how much chance is the permanent brain damage take place after a 2.2 hypo? Is brain damage a certain result of hypoglycemia?
s

Wow. I read your story and thought that you are doing something incredible here.
As others have pointed out hypos don't cause brain damage at this level and nor do high blood sugars unless over the long term. Diabetes is an art and not a science when it comes to do something as tricky as what our own pancreases do automatically. I felt guilty enough about this when I was pregnant but I imagine your feeling of responsibility is immense and I hope you are getting support from Diabetes UK (I think they still organise support events where you can meet parents of small kids with type 1) and your diabetologist.
Your daughter (and you ) might benefit from using a continuous glucose monitor or flash monitor so that you can easily check the impact of foods etc. on her blood glucose without finger pricks. As she grows up I am certain that pumps that react to these blood sugars will be available to allow for more automatic corrections of insulin dosing in real time (they exist now but aren't on the NHS).
There are also parent support groups such as Type One GRIT which is US based and follows a low carb approach to mitigate the difficulty of correct dosing. These parents seems to achieve good results by NOT following the conventional advice to eat quite a lot of carbs and dose for them! It is on Facebook anyway and may be of interest further down the line when you feel a little more confident.
For now please accept that you will make mistakes and learn from them. Your daughter will never have known anything different and will likely cope with it all in a way that will make you proud; those who get it young seem much better adjusted than those who get it as teens or adults IMO.

 

[The Pirate Twins]

I told my daughter's doc about that, he said it was very dangrous and might have potential damage. I understand that a doctor has always keep his words rigorous and accurate，it's not his job just to comfort me, and indeed, I have to keep myself in vigilance to hypo.

Indeed hypos or hypers can be dangerous if not caught or dealt with in time.
But it is a learning process and all T1 go though these things during their life.

Have a fab Christmas with your daughter and family.

 

[JMK1954]

Doctors generally give advice to all of us that is not based on personal experience. Very few of them have diabetes and have little idea of what it is like to deal with any type of diabetes outside a hospital on a daily basis. What they say is based almost entirely on theory. Yes, hypos can be dangerous for all of us, but in the real world they do happen sometimes, in spite of all our efforts as others have already said. . When I was pregnant 26 years ago, I ended up on an insulin drip in hospital on at least three occasions and I had frequent hypos but my son is fine, with no medical problems, a 2.1 degree in Maths and his biggest worry is his student debt. What should happen in theory and what does happen in real life can be very different.

You must carry hypo treatments with you at all times - something else others have already said . Acting promptly to treat a hypo is important and it must always take priority over everything else. Having to melt sugar in water is just another job for you and a delay you could do without. This situation must be very stressful for you, but over time you will get better at managing the situation. The doctors should have been telling you more about dealing with a hypo instead of just telling you to avoid them. In the real world, they will always happen. Best wishes for the future. I am sure I am speaking for everyone in saying that.

 

[enzo233]

Brain damage from a 2.2 hypo seems very unlikely to me, it's just something that happens on insulin.

If you ever suspect a hypo again, please test and treat immediately! Make sure to always carry meter and hypo treatment.
Next time, you can just treat then and there, no need to go back home!

Are you looking at the carbohydrates as well? They are more important than exact calories or percentage of proteïn. The amount of carbs is what the insulin dose will be based on in the future, instead of having fixed doses regardless of the meal.
She may be more or less hungry on different days (I know I am) so eating the exact same amount of calories every day doesn't really make sense and isn't necessary for good diabetes control.

Take your time, there's a lot of new things to learn for you, and it can't be all learned in a couple of weeks. That's perfectly fine.
Good luck!

Really helpful advice. Sure we're always carring meter and sugar with my daughter now, nomatter where we go.
I am calculating carbonhydrates too（I attached a meal plan below）. I tried to make the carbons at nearly 55%. So, based on my stastics, she has very simalar amout of carbons every meal.
Any way, I still have to consult professional nutritionist regarding to the plan. My doctor help us make an appointment with a nutritionist whom is very good at diabetes dietetics.
It's a still a longway ahead, I got so much to learn.

 

[enzo233]

You are doing a fantastic job. I really admire your diligence.
Your baby is sooo lucky to hv a brilliant mum.
Make sure to build up a good circle of compassionate friends, maybe one one day will feel confident enough to also give such good care and allow you a break from it all. Even once a year gives you that breather to regain your strength to manage the diabetes, at such a great level. Keep it in mind. Train someone you trust to be as good. They will pan out invaluable.

Actually I'm the father not mum. I'm pround to say that me and my little daughter, we are not fighting this alone. My wife, my 60 years old dad and mom have all been making great efforts, even my 4years old son, are always clamoring to help us give his little sister the injection. Two months ago his biggest wish is to become a fireman, now he has decided to be a doctor when he grow up，so he can give his little sister a perfect cure without needles.

 

[enzo233]

Have your diabetes team taught you to match the insulin dosage to the carbohydrates you are feeding?

It is worth keeping a diary. Take her BG level just before eating. Note down exactly what's she's having and take BG 2 hours later. Even the same food at different times of the day can give different results - & that's important info for the diabetes team.

Don't beat yourself up over the hypo. Little cartons of fruit juice are good to keep in the car if it happens again - which it will. Hypos are an annoying part of diabetic life but you will learn to recognise the signs. The quicker you treat the better.

I've been doing the diary part as detailed as I can. You really got the point, "Even the same food at different times of the day can give different results", that's pretty tricky, I have to adapt to that better. Thanks for reminding me.

 

[enzo233]

Hi @enzo233 and welcome to the forum, I am so sorry that you and your baby are here, but it will get better in time and the children are tough little cookies.
I would imagine you are anxious regarding your small baby with type 1 diagnosis and it's understandable ( my granddaughter was diagnosed with type 1 at 2 1/2 years and I remember how worried and anxious I felt)
Hypo's happen, but as long as you are prepared, having hypo treatments handy at home or away, glucose testing machine etc and to keep calm, counting to 10 and breathing slowly will help.
You are doing a fantastic job already and it will get easier in time.
Take care and wishing you and your baby, a happy and a healthy Christmas x

I can't remermber by what I'm led to this forum, some google searching results maybe. This is really a warm place for me, everyone here is so considerate and kind here.
Merry christmas to all of you! Have a good night!