How can I make my child's life as normal as I can

[Mahab]

Hello everyone,
Hope u and ur loved ones are fine.. My 4 year old is 3 months diagnosed with type1.. No to go through the hypers and the hypos and the ketons appreraning every now and then and all of that .. I just want to organize his life he could miss a week of school becuase we wakes up in the middle on the night for his after dinner snack or cuz he has low blood auger and needs to drink juice or cuz he has ketons and i need to wake him up to check it and so he drink water and then he just can't go back to sleep...we can't take him to school even if he go he only goes for 2 or 3 hours he is home most of the time.. Going out is not as easy as before with uncontrolled blood sugar.. Any advice how to get him back to his normal life

 

[donnellysdogs]

You need to get routine back in.

Its still fairly early days but you are mentioning both lows and high's, so I'm guessing that your son isn't balanced on a daily basis?

How often are you seeing consultant or speaking to a DSN?

Are your sons insulin doses fixed or are you changing them yourself?

Are you able to fix times of regular eating and routines? A low blood reading in night should not really impact on the following day to keeping your child out of school.

You've said uncontrolled blood sugars make going out difficult.. I think you really should be speaking to your hospital as readings should be stabilising...

Don't get me wrong there will be instances of high or low readings especially with a 4 year old but something is making me think thst these are quite frequent at the moment and you are also feeling stressed at trying to manage.

Can you tell me whether he's on multiple injections or a pump?

My friend gives her child a set amount of carbs at each meal, have you been advised to do this? How are you coping with carb counting?

 

[Mahab]

I am trying but every day something comes up...
I speak to his dr every week.. But usually I end uo figuring things on my own because not nursery she believes what I tell her and then when I follow her instructions we wend up having hypos cuz her only solution is always more insulin. My sons bg readings changes very day though he is on a set amount of carbs and we do carb counting for every meal and snack.. He is on a scale that used to change every other day but just 4 days ago we got a fixed dose. Our dr and hospital doesn't seem to care or maybe word care I'd not the right word but that's how I feel .. 3 months his bg is high above
14 and they don't seem concerned and keep telling me that's the way it is in the begining !!!! But could that be the case?? He is having pains in his head more often and I'm just worried. I mean how could high blood auger be ok. And them keep saying having it high better than low but isn't this too high.. I'm so considering the pump just so his bg would be managed better..feeling bad for the little one and just feel I reached closed doors and went just for the records we met 3 drs so far and progress what so ever

 

[Mahab]

Sorry for my spelling mistakes, my kid is jumping wanting his iPad back and didn't have time to go though it .. I hope I made sense

 

[donnellysdogs]

We do understand the feelings of parents. Totally. It isn't easy.

Its good initially to keep to the same qty of carbs.

Have you been taught how much correction dose to give when your sons levels are high? Ie (just an example) if one unit correction of insulin would bring him down 5 with his bloods?

It is hard in the beginning. Especially with young children.

Is your son now above 10 all the time?

The basics are that if your son gets a rise of more than 3.0 2-3 hours after a meal then the insulin for that meal wasn't enough... Or if he dropped more than 3.0 bg 2-3 hours after a meal then the bolus insulin for that was too much.

If his levels are a steady high then it would indicate that there usn't enough basal insulin. However, this would not necessarily mean he needs more in one go, it could mean that the timing if the basal injection needs to change. So that is not exceptionally easy decision to make. Initially I think consultants would if a steady high increase the basal insulin.

It is exceptionally frustrating for a parent. It is good that you are soeaking to the consultant on a weekly basis.

Not all anger in a 4 year old is down to bad levels though. It isn't nice to have parents stabbing you etc so these thoughts may well be affecting him.... As well as a normal 4 yr old tantrum!! Its not an easy time for you.

Have you had any discussions with Consultants about a pump? I know some young patients have got pumps...

 

[iHs]

Hi

the simplest insulin regime for little ones to use is not bolus basal......thats way too difficult. Its much easier to use twice daily regime and then adjust the carb to the action of the insulin and try to avoid the sweets, cakes and other high carb dtuff like the pizzas etc. For special occasions like psrties etc, more carb can be eaten with 1 to 2u of a bolus insulin so no big deal really and in general bg levels are easier to stabilise without going overboard trying to achieve tight control. The key to control is bg testing though as all regimes are variable without it.

 

[Mahab]

Thank u for ur feelings and support .. We as parents really need that and in my case I didn't get any support from close friends and not understanding why.. Sometimes u need close ppl to ask how r u doing and show some kind of sympathy or care.. Oh well
We were not taught how much correction does to give but thank you for this info I will bring it up to our dr..
My son is above 10 one to two times a day.. The problem is when he is above 10 And we increase the dose according to what the dr suggests it drops to 3, 3.9.. The problem the the pen is, it doesn't give less than half unit and sometimes half unit is more than what he need I suppose.

When is the best time to check ketons.. It seems to me they always apear at the end of the day!!! Not nursery he would have high blood auger on that day!!

We are meeting the pump consultant next week even my son is so excited about.. Taking more than 4 injections a day is just making him angry and he started hitting us and throwing things when he never used to do before.. And not going to school is even making him more frustrated.. I'm not sure how he will accept it and the idea of my tinny kid having a machine attached to it and it may be uncomfortable for him and he needs to walk and run and play with it just makes me sad..

 

[himtoo]

Hi Mahab
welcome to the forum

i am tagging @daisy1 as she puts a great package of information in her post for newly diagnosed that I would say you should read to understand as much as you can.

 

[Mahab]

Will consider that for sure, didnt know we can do that.. But wouldn't low carb diet may develop ketons.. Not the diabtic keyons the starvation ketons. My son screams hungry all day long and nothing fill him like carps when he was in honey moon period we stopped giving him the rapid insulin post meals cuz he was insulin sensitive and had to give him low carbs diet but ketons reached ++ and we had to give him correction dose and gave him plenty of water.. Why does it have to be so hard .. Treatment is there yes but why it doesn't work from the first time like other treatments or medication, why does it have to be so complicated I don't understand .. My heart goes to all diabetic ppl and there families cuz every illness u get grated and continue ur life as before but with this u life changes for ever and will never be the same..

 

[Mahab]

Hi Mahab
welcome to the forum

i am tagging @daisy1 as she puts a great package of information in her post for newly diagnosed that I would say you should read to understand as much as you can.

Thank you so much for welcoming me and I'm thrilled to be part of this support group.. I aplod everyone in this group and raise my hat to them what a Nobel and kind thing to do..

 

[iHs]

Forget a pump.....its great because of its ability to deliver minute doses of insulin but becomes a minefield in other ways and not at all easy for adults to use let alone small kids. Pumps are not made tiny enough for kids to use, they are like a pack of playing cards that will need to be kept in a waistband wrap around lycra grip or kept in a fabric type case on a band thats wrapped around the tummy. The lovely thing is that no one needs to do a pen injection but unless bg testing is done frequently, then its impossible to know if the pump is working ok and if the settings are correct. Every now and again, pumpers do unfortunately, develop DKA and usually this is down to the cannula going into the skin bent or correcting high bg levels and not bothering to bg test to make sure the insulin has been delivered and is making bg drop. Like I said...........a minefield

 

[Mahab]

Forget a pump.....its great because of its ability to deliver minute doses of insulin but becomes a minefield in other ways and not at all easy for adults to use let alone small kids. Pumps are not made tiny enough for kids to use, they are like a pack of playing cards that will need to be kept in a waistband wrap around lycra grip or kept in a fabric type case on a band thats wrapped around the tummy. The lovely thing is that no one needs to do a pen injection but unless bg testing is done frequently, then its impossible to know if the pump is working ok and if the settings are correct. Every now and again, pumpers do unfortunately, develop DKA and usually this is down to the cannula going into the skin bent or correcting high bg levels and not bothering to bg test to make sure the insulin has been delivered and is making bg drop. Like I said...........a minefield

Totally makes sense and that what I was telling my husband.. My son is just getting used to the insulin pen and I'm not in a rush to have it but the drs keep recommending it to us and honestly it seems to me it a very new thing in the market and not sure if enough researches were done on it specially on kids not adults..
The dr told us that there is a bg monitor that works with the pump and gives instructions to the pump when the body needs insulin and stops when it's near the hypo.. Do u think that would help not to go into dka??? There is even an alert so we know it it's not attracted properly .. Of course it's a machine and u can't depend on it this i can't disagree about with any1

 

[donnellysdogs]

Know what you mean about friends and family not supporting... Perhaps uts just because they have no reality of the impact this diagnosis has on parents and children.
To be honest the media just highlighting that more adults grtting T2 doesn't help because people don't realise that its **** hard for children and parents. You after all are almost the diabetic yourself because of managing it day in day out, hour by hour! And eith no let up either!
Some people without diabetes just do not realise.... And this can be close family too! They just do not realise the struggle it is for parents.

Going on from that.. Another question..(sorry). Have you applied for DLA.. As you should get some payment.

If your son is not able to have a correction small enough without hypo then it appears that he may well benefit from a pump that can administer small doses. As a pump user myself I would say that one with a remote control is the easiest for a parent. A friend in Ireland has one for her daughter (she went on pump at 8) finds it easier with a remote control handset because it means she can sit down at night and look at readings and do adjustments when her daughter is asleep or doing other things.

To be honest...I don't know the best time to check for ketones as I never do it.... I've never had DKA either. If levels are consistently above 14 (more than 2 blood tests in 5 hours above 14) then for a child I would test.. But... What have your instructions been when you see ketones.... (Besides get worried!!) have they explained what low ketones mean and what higher ketones mean?

Please contact IDDT and ask them for a childs school passport information booklet to be sent to you. Their phone number is 01604 622837. They also do neesletters and their latest March newsletter has details for parents on hypos in children. Ask them to send you March newsletter and future newsletters too.

Yes the anger at having injections is understandable and I would say that there is only really coaxing and understanding that can reduce the anger. Would he be able to be coaxed with something that he enjoys by saying (just an example) "do you think you could get to 5 days without getting upset with injections and if you can.. Then we will go out to xxx activity centre or something similar)... And then get a big piece of paper stuck up with day 1, day 2 etc! Or sitting with him everyday at bedtime and asking how he feels the day was and discuss the day with him? 2 parents I know do this / have done this...and it has helped.
When discussing though it is important (if possible) to reinforce good, happy, positive things).

I really feel for you, as will others. It may be that as iHs has suggested that a mixed 2 a day injection would be easier but the way that most hospitals now are priortising children under 12 to be given a pump seems to me (only my opinion though) to have reasoning for them to do so. I know my friend in Ireland 4 years on has seen better results for her daughter than when she was on injections....however parents and children are all individuals and one size doesn't fit all.