Hysterical daughter - Help

[oliverlexie]

Hi,
My 7 year old Lexie is newly diagnosed Type 1- 7th jan and we are finally home after 12 days in hospital.
In all that time she has been so brave and courageous - not one tear - does her own blood sugar test and assists in injections.
However we have been home for 2 days and she has had 3 hysterical crying attacks - which is so rare for her.
The one I was worried about was when her sugars went down to 0,31 and she almost had a panic attack - I was remarkably calm and managed to calm her but she screamed and I mean screamed for 20 mins. I obviously gave her some sugar as she was so low and we tested her evry 10 mins so she could be reassured that her levels were going up.
We had another one last night when i tried to test her at midnight - she was asleep and we have this new pen ( has a revolver of needles in) that is rubbish (maybe I haven't got the hold of it) but struggled to get any blood for a read, woke her up and again completely in-consolable.

Is this a result of the illness - low sugars perhaps - I would like to know if you find your child has mood swings at certain times.

Also - I know I am learning about this all the time but :- If you did a read at 10pm (she is asleep)
and they were below the recommended level for night (under 1,20 in her case) - I give her 1.5 biscottes ( which are a kind of dried bread) as recommended. I then cannot sleep as worried they won't work so I do another one at 12pm and then another one at 2am just to check.

I guess as I am still learning and very unconfident - If she went into hypo whilst asleep - would she feel ill enough to wake up and alert me?

Please be gentle!!!!! Day 12 was horrendous , Day 13 today has been much better!!!!

Julie

 

[suzi]

Hi Julie,
I really do sympathise, i can remember taking about 1/2 just to coax Andrew to pull his trousers down for me to do an injection whilst his Dad held him, we then progressed to holding a sugar free ice pop to numb his leg for a few minutes with the provision that if he did it without a fuss he got the ice pop. In those early days there were many tears, screaming matches and hugs, for both Andrew and i, so you are not alone.
I cant get my head round your bs readings as there not what we use here, please forgive me, i'm having one of those senior moments, and can't remember the conversion bit.
Your not alone checking Lexie during the night and its only natural to want to do so, in the months to come you will find the confidence and reassurance that a full nights sleep for you both is possible.
Andrews body always wakes him and night hypos these days are rare, but when they did happen, his body always woke him as if he were having a nightmare. I usually met him on the landing and took his bs to find he was low, he would say he woke in a sweat with his heart pounding (like a nightmare) must be the bodies defence kicking in by waking him. Hope that puts your mind at ease slightly, its only natural to worry.
Low sugars can result in too much insulin, not enough food/snacks, too much exercise or not enough carbs to cover the exercise. In the early days they can result in the pancreas releasing insulin as the body is still in the honeymoon period.
Hope i've been of some help, keep asking the questions, i'm only too happy to help.
Take care,
Suzi x

 

[oliverlexie]

Hi Suzi,
Many Thanks for your reassurance -
I reread my post and thought it sounded quite callous - it wasn't meant to be - before this all happened she was so happy - never having 'Brat Attacks'!!!!
I think we will just plod through it - I am lucky not to be working at the moment - I would have no idea how I would cope juggling work.
Friends I know tell me ' Oh I used to work with someone who had diabetes and they were fine - lived a normal life' as if its not a big thing - I had absolutley no comprehension how having a child taken ill suddenly with a illness or condition can hit you. And as I try to explain to them knowing that something else - some other external thing is needed to keep her body working is something I am finding hard to cope with.
When we had our down day yesterday - I nearly called an ambulance as she was so hysterical - her reading was 0,31 mg/dl which I think is equiv to 1.7 in Uk terms I just felt this huge huge responsibilty - If I don't call an ambulance or loose my cool she could go into a coma and thats something that very few people have to deal with - especially your own children.
I think I am overwhelmed by the constant monitering and if I miss just 1 - could have a significant impact on her, and if I misread one sign or miss it ......
At least one good thing - even though I could probably down a bottle of Gin now - I have stopped drinking my nightly 2 glasses of wine - so hopefully the pounds will fall off!!!!!!!

Thanks for all your support - I already am gaining confidence!
Julie

 

[Shazza]

Hi Julie

Sending you hugs it is very hard in the first few weeks but I promise it does get better, I,m still learning and asking Suzi for advice this forum is really good and you will find lots of advice. Night time hypos scare me as well, havent had any yet but was close last week, I always make sure Ewan has a supper and try and get him to bed with a bs of 7 but doesnt always work out like that :?

Hope today has went well x

 

[SophiaW]

Hi Julie I'm sorry that your daughter has got diabetes. You're not alone in all the emotions you are feeling, I think most of us have been there and we can understand.

I used to worry constantly about Jess and wake numerous times through the night keeping an eye on her for fear of her dropping too low. Since we've switched to a basal/bolus regime that has improved so much and I get a full nights sleep most nights now.

When Jess has low blood sugars she can get quite stroppy and emotional, it's often the first sign that I know something is wrong. I expect your daughter is also worried (perhaps picking up on your anxiety a bit too?) and you may notice a change in her moods whilst she learns to adjust to this new way of life and routine of injections and testing. I know Jess sometimes worries if she's gone low and she'll want me to test her a few times after treating the hypo so that she's satisfied that everything is okay.

If your daughter is going low too often you need to discuss adjusting her insulin with your consultant. It's better to bring her readings down gradually and keep the readings consistent rather than having swings between low and high.

It does get better with time, you'll both learn to cope better and settle into some sort of routine. With knowledge you'll also become more confident. In the meantime don't be afraid to ask (here, your consultant or nurse, doctor etc.) as many questions as you need to and learn as much as you can. I've found knowledge to be the most useful tool in managing Jess' diabetes.

 

[oliverlexie]

Thank -you for all your replies - We are now just going into day 6 and things seem to be getting better day by day.The hysterics seem to be calming down massively - I think we were spared completely today!!!
I have been reducing her rapid insuline a unit a day and the hypos are getting better - I knew there would be a change in the dose once home but not sure how much!
She also is so much more confident now and a bit blase about being low - ' Need some juice Mummy' and that seems to do the job.
I am still reducing the dose as they are continuing - but its a fine line isn't it!
Struggling a bit with the evenings - she has her jab at 7pm , eats dinner , goes to bed at 8.15 ( which has moved back from 7.30pm). I then do a read at 10pm and she is always under the level they have recommended so I have to wake her and give her 2 biscottes and milk which she eats half asleep.
Has anyone found a method by which they don't have to wake them for a supper - even though my 11 yr old is very envious - Its his idea of heaven to be woken to be fed!
And Thank-you for all your support - I think the one thing I am missing here in France is a support network of english speakers - and you are right Sophia - knowledge is the best tool so believe me - I will be reading here with a fine tooth comb!!!

 

[SophiaW]

From what I understand you have said it appears that your daughter's novorapid injection with her meal before bedtime is too much and that needs to be reduced. What insulins is she using and do you carb count? In the early days when they're still producing a little insulin themselves it is always tricky but things will settle down into some sort of order.

 

[suzi]

Hi Julie,
I'm glad to hear things are settling down a bit, it's a life changing experience for both of you, and it takes time. Like SohieW's mam says if you give us an idea of which insulins Lexie is on and if your carb counting, we may be able to make your life a little easier. Though initially when 1st diagnosed Lexie is in what is called in the Honeymoon period (where her pancreas is still producing a little insulin) so it can be a bit of a rollercoaster ride juggling insulin and hypos. It does settle down eventually, when her pancreas no longer produces insulin and then its easier to adjust the amount of insulin she needs, so it does get easier to control.
Hope you have a good weekend, take care,
Suzi x

 

[phoenix]

Hi I'm glad that things are settling down.
I really understand your need for an English language support group. It was difficult enough being diagnosed type 1 as an adult in France and not really being able to talk things through or ask the more difficult questions. It's much easier now and when I went on courses I got to know an Australian and another person from the UK. I suppose it's less likely with a child but your team may know of other English speaking parents.

I only just noticed the confusion over units in your post. In France they are really akward since they write it down as mg/l which I haven't found anywhere else in the world!

I think your best support obviously comes from other parents and as a child many things that apply to adults aren't relevent but I've got used to 'translating' blood test results etc from French to English so if I can be of any help please pm me.
If you do start carb counting as mentioned in Suzi's post this is a link to a French carb counting book inteded for pumpers but equally useful with bolus injections (there is a paper version which you should be able to get from your nurse or doc.)
http://www.medtronic-diabete.fr/tl_files/FR/PDF/brochure glucides.pdf

 

[Debloubed]

Hi Julie,

Hope things are a bit better today! I just came across your post by accident really but thought I'd let you know that hysterics etc can defo be a hypo symptom, even for us older types! My other half tells me he thinks that I get very panicked and screamy because I am losing control of myself and that really does make sense! Fortunately I don't have many debilitating hypo's where I need outside help but when I do, I am partially aware that I can't help myself (if that makes sense?!) and that makes me panic and then cry like mad!! and that is even after 20+ years of experience, your little girl is brand new to this so it must be pretty over whelming at times.............for you too!

Keep at it, there are loads of 'tools' in place to help you get to grips with this, it WILL get easier, I promise!

 

[oliverlexie]

Thank-you to everyone who has responded - We are now a week out of hospital and everything seems to be really settling down - she hasn't had to have a snack for the last 2 nights at 10pm as levels were good and last night I didn't set the alarm to get up at 2am.
I have the most stinky cold at the moment and feel lousy - I think it has all caught up with me - but will come back with more info later in the week - I just wanted to Thank all of you that took the time to respond and make our first week so much more easier.
Kind Regards
Julie

 

[suzi]

Hi Julie,
Hope you get better soon, its just that time of year for colds, but with all the emotion and running about you've done lately, i'm not surprised your immune system has given in and your feeling lousy. Glad things are on a more even keel, and Lexie is managing so much better.
Take care and get well soon,
Suzi x

 

[SophiaW]

Hi, I'm pleased to hear that things are settling down a little. Hope you get over your cold soon too

 

[bigdhughes]

Personnaly i've never had a hypo at night as ive always woken up, I have symptoms such as a tingling sensation through my legs and I start shaking. My mother told me about a week ago that everynight at about 1:00 she'd come into my room just to check on me...i'm now 18 and she only stopped altogether on my birthday in October. Once you get used to knowing how high her blood levels should be to get her through the night it should be alot less stressful for you and you shouldnt have to check her throughout the night.

Rewards are always good for 'bravery' as my parents called it or good BS levels or for not putting up a fuss. As a child this turned the idea of Diabetes being a bad thing into just a part of my life with its ups and downs. It certainly worked with me anyways

 

[vic griff]

hi i have a lot of lows at night aswel.if my bloods are low in the middle of th night i wanna sleep right threw it aswel.my mum usaly thinks if i dont wake i might of had a fit or gon in a coma. thnx . so ye alot of parents do find it hard at the bgining like u , u just have to wait a little time to start realasing that u might be a little calmer after u get use to it.hop u find it a little easier after a few months or years.and bhope she gets better.xxxxx

 

[oliverlexie]

Hi every one,

A massive Thank-you for all your responses, help and advice.
We seem to be getting along so much better now and she is alot more balanced now - and therefore the mood swings less. It is clear when she is low she is more likely to be irritable or likely to have a bout of hysteria but I think I am alot calmer now too so it all helps.
Thank you again.
Julie

 

[Theunicornlady]

I finally let my daughter out of my sight 18 months after diagnosis last year. I sent her to her Father's parents to stay for a few days and I sent her with helpful leaflets picked up from a Diabetes Uk display a few days earlier. The first question I got asked by her Gran was how on earth did I sleep at night. The answer was, the first few months I didn't. I was up every night checking on my daughter. As we got the hang of what we had to do, I started to sleep better and now I only wake up when I hear her going to the loo during the night. It does get easier and as Lexie gets used to her condition, hopefully the hysterics will be reduced. My heart goes out to you all - massive hugs honey.

The Unicorn Lady
Mother to 11 year old T1 girl
and 4 year old son possibly ADHD