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What Now?!

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
J

justlikethehotels

Member
Relationship to Diabetes
Parent of person with diabetes
OK, so G was diagnosed on 12th December. Before the New Year, virtually all her levels were between 8 and 12. Since the New Year virtually all below 10... you'd think that was good right?

But for the last week, every single day, she's been low at least once, sometimes more than once. Help! I thought they were happening at similar times of day but she's woken up low this morning and thinks she may have been low during the night (but "didn't want to worry me" so now of course I'm worried sick).

Under advice from the nurses we changed the carb ratio at the beginning of the week so now we're 1:15 at breakfast, 1:17 at lunch and dinner and 1:20 before bed if she wants a big snack. It does seemed to have stopped her going low in the evening, but she's low virtually every afternoon still.

She's getting in a bit of a state about it now - she's scared that they're "happening all the time" and doesn't want to go to school, and of course I'm now struggling because she's in a state ...

The only changes I can see are that she's back at school and is now back to eating normal amounts of food (she was eating for the entire UK and most of Europe too) ...
 
It sounds like it may be the basal insulin that is too high now, which causes lows when she has been more active but consuming fewer carbs than when not at school. Although my case is very different, I experienced quite a few lows in my first few weeks because it took quite a bit of time and experience to work out where the problem may lie. A child has extra variables, like growing and hormones that I didn't have to deal with.

So I would ask the DSN about the basal and see if that needs changing 🙂
 
Just spoken to the nurse who said to cut the levemir back by 1 unit and to increase the lunchtime and tea time carb ratios to 1:20 for school days.

And as I'm sitting here I'm thinking "now why didn't I think of that" ... and then I remember ... I'm getting in a state because Gs getting in a state because I'm her mum and I wish she was "better" and didn't have to deal with this horrible thing every day ...

Hey ho, self pity over ... onwards and upwards to a hypo free day (she says hopefully) ...
 
I think that the thing to remember here is that it's still very early days for you. As with anything, a certain amount of trial and error will take place, for instance extra excercise on P.E. days, exam stress, even the weather, they can all have an effect. With time and experience things will get better, and both of you will feel more confident....honest.🙂
 
It's still very early days for G, Justlikethehotels, but as well as fine tuning insulin doses, which is difficult in honeymoon phases when pancreas is still kicking out some insulin at unpredictable times, and even mor difficult to children experiencing growth spurts, hormones etc, there is one more practical suggestion I'd make for you / G - ensure that sugary food is always within reach eg in pockets, beside bed etc, so that G can eat without getting up. At night, in particular, walking across a landing in the dark is a situation best avoided, which it can be by having eg sweets on bedside locker, or, in my case, with my side of bed against the wall, I have a bumbag of diabetes kit, glasses & contact lenses and sweets, hanging from bedstead. When away from home, I place bumbag beside my head when sleeping in a tent or attach it to bunk in shared hostel rooms etc.
 
Can't remember if you've said - do you test during the night?

Could you sneak in and test about 3am?
 
With my son diagnosed at the same time a year ealier, his basal was Lantus and he started on 30u at night. After a few weeks he started having hypos (his first ones were during the evening mainly, then got to random times) and from one every few days, it got to happening every single day, sometimes more than once a day.

I phoned his DSN as we hadn't ever been told to adjust doses without their say so, so she told us to drop to 28u. It settled for a couple of weeks, then they started again (so be prepared for that) so again they dropped his Lantus another unit or two, and so the pattern went on, until he seemed to remain pretty steady at 25u, just the odd random hypo then.

I totally get where you are coming from with G being reluctant to go to school, we had big problems this time last year, and it was GCSE year for my son so far from ideal, and in the end he had a big meltdown at school one day. Luckily the school nurse got in contact with his DSN (and of course kept us in the loop) and she arranged for the team's psychologist to visit him at school as he was having massive anxiety problems with leaving the house at that stage.

It must be totally shocking for them at that stage, and is bound to cause anxiety not knowing where and when the next one is going to strike. I remember being quite shocked myself the first couple of times too as my son looked so deathly white and had violent shakes. All I would advise is to try and keep your own anxiety in check if at all possible (and I know that's damn hard) as this will only fuel her own feelings.

I do wonder with my son if that is partly why he keeps himself too high a lot of the time, because he hates hypos and I think they still scare him a bit, but he's too big to admit that.

I guess the only other advice I can offer is to tell her to test/take glucose the minute she feels even slightly iffy, though of course not being T1 myself I don't know if you sense things coming on before it gets to the really shaky/wobbly stage.
 
You often can tell and woe betide you if you do ignore it 'because you just need to finish this'. It's often you that ends up being finished, instead of 'this' LOL
 
Helpful comments - thanks.

WE had quite a good weekend - the drop in Levemir seemed to work but then we had a random hypo in a craft shop that we'd gone to especially as a treat to cheer her up! Typical.

Although we've had a lot less hypos in the last few days G is getting more and more down. Bless her she's such a worrier - she's worrying because she's missing school, she's worrying because she's having to catch up, she's worrying because she's so tired, she's worrying because she's not sure what she's doing wrong, she's worrying because she's got so much homework to do, she's worrying that she might have missed some homework, she's worrying because she doesn't want her friends to get cross with her worrying so much ... the list goes on ...

This is the hardest thing for me - she's bursting into tears all the time (not G at all - she's always kept her emotions hidden in the past so this is really hard) and I can't make it right.

I've phoned the nurse to ask for help and am waiting for the paediatric psychologist to call back to make an appointment, most likely for Wednesday, which will typically means she misses more school, but the psychologist has told the DSN that she think it's important to see her sooner rather than later .. I tend to agree.

I cannot fault the support we're getting, but God it's hard. And if I feel this bad, how does G feel?! Next stop is a call to the school to ask what they recommend and to find out how they can support her.

Wish me luck!
 
I really feel for you. It is so tough being a parent. My son said to me a while back (rightly so) that I can't possibly imagine what it's like being in his position, and I replied that he too can't possibly imagine what it's like for me, his mum. All I want to do is make things better. It's heartbreaking seeing your very tough child/teenager suddenly becoming this blubbing wreck. My son went through it too, the weepy stage after just a few weeks. His anxiety manifested itself in diarrhoea, every morning regular as clockwork, in the last half hour before school. He would get to the front door to go, turn, run to the loo, get to the door again, then just break down and sob. It was so very hard.

You are doing all the right things asking for help, it did my lad the world of good. Before you know it G will be back to doing things just how she did before (with little adjustements here and there). Letting them go is so hard for us. You imagine the worst possible scenarios. I was so glad his first hypos were at home so we knew first hand what exactly happened. I had this overwhelming fear he would fall to the floor unconscious at the first drop in BG levels. What a a relief when he didn't, not that it stopped me clucking round him all the time!

A year on and we haven't faced a crisis yet, apart from his spell of refusing to test/inject, but we haven't had any emergency hospital admissions or anything like that - that could be something else she is fearing. Maybe she will open up a bit more to a stranger/professional who knows how to get her darkest fears out of her. I am sure a child in this position must be terrified of all sorts of possible problems.

Keep your chin up. Don't be afraid to have a little cry too yourself if you need to. It comes in waves, but it does get better, truly it does. Good luck. Thinking of you.

Tina
 
I do wish you luck 🙂 Just wanted to add that fluctuating levels can make you more tearful than normal, on top of the obvious fears and concerns. Sometimes I can be perfectly well and happy, but because my levels are up and down a bit I keep wanting to burst into tears (I don't, of course, being a tough Northerner! 😉) There may be an element of this at play making her more emotional than otherwise.
 
Just to say I know exactly what you mean as my daughter is a big worrier too - I really hope you daughter can see the psychologist soon and that it helps.

My daughter has been seeing a psychologist for over a year at clinic, now also seeing school councellor and waiting for referral to CAMHS but there is a waiting list :(

Try and keep the school 'in the loop' and arrange for catch up work as soon as possible so that they realise that it is a genuine problem and not just truancy.

Keep your chin up and please PM me if you want a chat (if I don't reply straight away it will be problems with Internet again😡)
 
I just want to say good luck to your daughter for Wednesday.
 
A quick update then ... G saw the psychologist who did some questionnaires with her and she came out as just in normal ranges on the depression questionnaire and mildly anxious ... think that's what she said.

Personally I think that she's more like "quite" anxious rather than "mildly", and I'd also say she was if not actually depressed then certainly heading there (I had terribly post natal depression after her younger brother was born so am aware of symptoms of depression, hence my concern) but hey, what do I know! The psychologist is the one with the degree!

Have decided to keep a diary showing when she's tearful etc, especially following Northerners comments - that way at least we'll be able to see if the fluctuations in levels are related to the tears.

She's got two more appointments booked, for some cognitive behaviour therapy, to help with the anxiety. Let's hope it works 🙂

I've also spoke to her school, who are very supportive and keen to do everything they can to help.

Sadly, we had tears again on Thursday and on Friday she was once again begging me to let her stay at home :(

Two steps forward, one step back ...
 
Sorry to hear things have been so tough for your daughter and you. The early weeks are horrible. I just wondered if your daughter's school has a school nurse on site? My son obviously needed her a little in the early days, and actually built up a close bond with her, so if he had a particularly tough day he could go and sit and let it all pour out to her. She has been excellent, and it was actually her who phoned our DSN and got the psychologist involved with our son.

I think it just helped him to have someone, not family, and not a doctor or nurse (in uniform) and away from the hospital to whom he could bare his soul. No doubt she saw tears from him, but it was of great comfort to him I am convinced, having a bolt hole at school. Yes, for a while, I think he found any excuse to go and sit with her for a chat, but in the long run it was very beneficial. Now, I believe he has only visited her once since Christmas and that was only to discuss arrangements during AS level exams this month.

Your daughter will catch up in due course, but whilst her levels are settling down she won't be feeling 100% anyway, and I appreciate she is a worrier, but things will settle down in a few months. This is a massive deal to them and it does take time for them to fully accept things and get their heads round it. Hang on in there, this is the toughest time, things really will get better soon.

Don't bottle things up yourself either, just keep popping on here. People are so supportive, it's a real source of comfort to many.
 
Thanks for the update 🙂 I hope that the appointments prove fruitful and that she begins to feel stronger and more able to deal with her diabetes. 🙂
 
I hope the CBT helps.

I had a bad period a while back not related to D but was crying most days, however it was only when I was crying I knew there was a problem, it was like I had a safety valve that then blocked the tears temporarily from my mind, at those in between times I would likely have told you I was ok. (I can't remember how old your Dr is - so the lat suggestion may not be of any use)

Do you think it would help your daughter to meet other children with diabetes, or a young aldut who has been diabetic since childhood that she could talk to. The other suggestion is maybe to get your daughter to read some of the posts here and see how often people post feeling that they are not coping.
 
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