Newly Diagnosed 4 year old daughter

[Penfold_Dad]

Hi all

I am the parent to a newly diagnosed Type 1 diabetic 4 year old daughter. We are a week and a half since diagnosis. We found out by her slipping slowly into DKA and having to spend a couple of days in HDU being rehydrated and recieving insulin. We are coping fairly well and are already carb counting and trying to get things under control. She has taken to the continuous regime of testing and injecting without so much as batting an eyelid. It's been a big thing to get my head around and fortunately my wife is a nurse and I am just about bright enough to get my head around the science and the regime.

The issues we are having is getting her blood bm' down. Getting the ratio right seems to be an art and she is rarely out of the teens and often in the twenties at the minute even when we feel are carb counting is spot on. Our DSN (diabetes specialist nurse) has been a god send and assures us that this is normal at new diagnosis when she was allowed to get in such a bad way before diagnosis.

My concerns are at the minute the high bm's, making sure the injections are right (we do seem to leave tiny bits of leakage from the needle) and getting the ratio of medication to carbs right.

We started today with a bm of 4.5 and we're hopeful we could keep to a target range but have been way out with readings in the 20's two hours after eating and still correcting all the time. I am really looking forward to feeling like we stand some chance of getting a control on this as so far diabetes is a slippery beast!

I imagine I will be leaning on this forum for some advice in the coming weeks/months/years so please bear with me.

Best wishes and hope you are all doing okay
Stuart

 

[catherinecherub]

Hi @Penfold_Dad and welcome to the forum.

Ask anything that concerns you and other parents of children with diabetes or Type1s, many diagnosed as children, will be able to help.

 

[bigboi]

Thats so good to hear how u are coping! Sounds like u are doing very well with it and the amazing girl is just getting on with it makes me smile ! It will get easier with time, especially for the girl too!

 

[Vick123]

Hello
My 3 year old little boy was diagnosed around 3 months ago now. I am also a nurse and luckily we caught it early! Highs were the norm at the beginning and have only now just started to stay most of the time below 10.
Lantus takes a long time to find the right dose. You will also be forever changing your ratios. Also they get poorly and grow etc so it will need to be continuously changed.
It has definitely started to get a bit easier. My head is also now like a carb dictionary.
We are currently awaiting a pump which we think will help a lot.
It's amazing how quickly they take to it, there amazing.
I am still learning lots to but if you both have any questions I may be able to answer just ask.
Take care

 

[Omnipod]

Id recomend you look into CGM - Dexcom. You can get funding for this through your CCG. No finger pricking and you are able to set alarms for hypo's and hypers.
A pump is great - perhaps the pump that works with the dexcom. - Animas Vibe

https://www.animascorp.co.uk/insulin-pumps/vibe-insulin-pump

http://www.dexcom.com/g5-mobile-cgm

 

[Penfold_Dad]

Thanks guys, seems like here has a strong network of support.

It's reassuring to here that the highs are normal, it's been making me a little worried that we can't bring it down. The amount she is eating is actually unbelievable, we have an upper limit of 3.0 with the bolts which when you account for a correction just isn't enough insulin to cover the food. She is in pretty good form though and looking and acting her normal self which is a pleasure to see after all the drama and heartbreak of the weekend before last.

 

[Penfold_Dad]

Another question......does anyone use the Accu check expert? We have one and I realised it has a carb counting tool feature that we don't use. We have been calculating the carbs manually but it appears the machine can do it for you which might be really useful for the future. I guess we need to figure out how to adjust the ratios.

 

[Omnipod]

i dont think it counts the actual carbs. I think its just a wizard that calculates the ratio of insulin required. You may want to try getting the app 'carbs&cals'. Its a very good tool to help with carb counting.
You also need to take the type of carbohydrate into account.... some are high GI which spike the Blood glucose and then you get some low GI which dont spike the blood glucose (the better and safer carbs) ie..veg that grows above the ground. Fruit is somewhat high GI and does cause a spike in glucose so do watch that. Perhaps avoid fruit juices. I tend to go for a robinsons squash with water which has trace of carbs. Full fat ie full fat yoghurt is also good as it tends to stabilise the glucose. I would eat a few almonds before a meal which helps my bloods not to spike too fast or drop too fast. (its all a lot to take in and takes many years of trial and error). I would highly recomend that you and your wife get on a DAFNE course. It teaches you everything about insulin, carbohydrates, sickness etc. A DAFNE course would give you both more confidence and a solid understanding of diabetes.
I am on a freestyle libre. http://www.freestylelibre.co.uk/
I can honestly say that I only learned how to control my diabetes after DAFNE and then after going on the libre as that provided me with information as to how I was reacting to certain foods and the timing of insulin. The insight arrows also gave me a huge 'peace of mind' because I can see where my sugar levels are heading in real time. It also keeps a record of insulin on board.

 

[Penfold_Dad]

You are right it just works out the bolus for you based on your carb grams and ratio. I've answered my own question this morning as in that until the Lantus is set right (it varies every couple of days) we shouldn't use that function according to the instruction manual.

 

[endocrinegremlin]

a 3 unit limit on your bolus seems utterly bizarre. And is probably the problem. I'd question your team over that stat. That would not get me through 2 pieces of plain toast. She may be a diabetic that has a higher insulin to carb ratio and if you are limiting the amount of insulin she is allowed per meal then that is old school 'feeding your insulin' rather than living with d. It will take months to get her stable. Everything right now is a first. First longer walk, first time swimming, playing football, at soft play, when she's upset, first time she has pizza or pasta or potatoes. It is worrying but for a few months she will get through them unscathed at the end in long term means as you all find your feet. Some people need what the 'book' says and others don't and you only find that out through trial and error. Pumps and CGMs are difficult to get a hold of in the UK. Strict guidelines have to be met and I doubt your team will consider them until she has been diabetic for a year at least. You are what we call 'honeymooning' ie, her body is getting used to the change. So, it sounds like you are doing all the right things for her. Take notes on everything. What foods send her high, what activities send her low ect. You're doing great. But we're always here

 

[Penfold_Dad]

a 3 unit limit on your bolus seems utterly bizarre. And is probably the problem. I'd question your team over that stat. That would not get me through 2 pieces of plain toast. She may be a diabetic that has a higher insulin to carb ratio and if you are limiting the amount of insulin she is allowed per meal then that is old school 'feeding your insulin' rather than living with d. It will take months to get her stable. Everything right now is a first. First longer walk, first time swimming, playing football, at soft play, when she's upset, first time she has pizza or pasta or potatoes. It is worrying but for a few months she will get through them unscathed at the end in long term means as you all find your feet. Some people need what the 'book' says and others don't and you only find that out through trial and error. Pumps and CGMs are difficult to get a hold of in the UK. Strict guidelines have to be met and I doubt your team will consider them until she has been diabetic for a year at least. You are what we call 'honeymooning' ie, her body is getting used to the change. So, it sounds like you are doing all the right things for her. Take notes on everything. What foods send her high, what activities send her low ect. You're doing great. But we're always here

It seems like they are very keen for her to have a pump ASAP. We were looking at getting through the initial honeymoon period and then making that decision. Interesting what you say about the upper limit. We basically couldn't give her enough insulin last night for the amount of food she consumed!

 

[endocrinegremlin]

It seems like they are very keen for her to have a pump ASAP. We were looking at getting through the initial honeymoon period and then making that decision. Interesting what you say about the upper limit. We basically couldn't give her enough insulin last night for the amount of food she consumed!

I was never given a limit in all my 18 D years! If I needed the insulin then I needed it! When I was younger you had set doses at meals but no longer. If she is going to hate her Diabetes it will begin with the 'sorry you can't eat that because you already ate that'. I hope it all works out for you

 

[ElizabethPurkiss]

My son is now 25 and has had a pump since January. He was diagnosed when he was 7 and we first found out about pumps when he was about 10 and have been fighting for one ever since. His control these last 6 months has been so much better - he is feeling better in himself, he looks better. He can more or less eat what he likes - making insulin adjustments easily with the pump. My advice to anyone with newly diagnosed children would be to push for the pump as soon as possible - a young child will quickly get used to having it there, it will require less injections (although plenty bm's) although there is a newer thing out now apparently for doing a more continuous monitoring in line with the pump. If offered take it. If it really doesn't work out for you you can always go back to injections; but I recommend a pump!

 

[SunnyB]

Hello! Our little boy was diagnosed in Aug .. He turned 2 end of October.. We started pumping in Sep and haven't looked back it's really helped with his eating as like your daughter his appetite is insatiable! We can simply use the pump to bolus for what he eats without having to keep injecting.. Hope things are going ok for you guys.

 

[bpppf]

Hi,
I'm a father of a little boy (1 year old) with DM1. Have you ever wondered about that diabetics do not do well with carbs? why is that diets are prescribed with lots of carbs ? It is a vicious circle. Insulin/carbs/insulin forever. We started a month ago a LCHF diet. The results are excellent. Glycemia is good (100 ~200 mg/L) and he taking only a basal shot per day.No bolus need ! My advice: inform yourself about.

 

[Penfold_Dad]

I'm well aware of the debate now from the reading I have done and the messages I have received. The nutritionist advice is to eat carbs with every meal as part of a balanced diet vs the gritters (Bernstein) advice of low carb low insulin regime with a more balanced blood sugar level and using ketosis for energy rather than carbs and glucose.

I can see the benefits of low carb and I think it is something we might start to shift slowly towards in the future if we can get my daughter to happily do it and I understand exactly what it means and what it does to the body.

Firstly I think I'm going to go lo carb myself for a stint and see how it feels and make judgement before not following our dieticians advice. I will still eat carbs but was thinking of only ten or so per meal or those present naturally in vegetables.

 

[Mrs Vimes]

Sounds like a plan. Be aware though that you can go through something called carb flu. Withdrawal symptoms from carbs so it may feel odd at first.
Also dropping carbs will mean that you'll produce less insulin. I think that means you drop quite a bit of salt. I did feel a bit dizzy at first. A cup of broth, bouillon or a cube of oxo replaced the salts I list and felt fine after.

 

[azure]

Lots of pump recommendations here, which I would recommend that you look into too. Fortunately, none of my children have Type 1 but if they did, a pump would be top of my list to help them. The NHS recommendations for blood sugar levels for children have been tightened up and emphasised as a lot of children were not in target. In my opinion, the fine-tuning a pump provides can help get sugars in range. It can also help with hypos - particularly at night.

Regarding diet, the important thing is to have a regime that you and your daughter are happy with. You'll see a lot of suggestions here but you'll gradually work out what suits your daughter

Low carb can be good, but so can moderate carb. I eat moderate carbs like many people here and my last HbA1C was 33.

How are your daughter's levels now? Have you been able to adjust her insulin with the help of her team? I hope all's going well. It does take time.

 

[bpppf]

Dear Penfold_Dad,

There is no right answer or universal prescription.

We are all in the same boat. We want the best for our kids.

I wish you and us all luck.