How long before my 13 month old becomes more stable?

[sarburg]

We're a week and a half in after being told our dear little girl of 13 months has type 1. Obviously we're heartbroken and this forum has already given me strength knowing I'm not alone and not silly shedding tear after tear each day.
The last two days we've had a mixture of bm's but two hypos.Its the hypos that scare me as I expected to be able to see a change in her but ive missed the signs both times and its knocked my confidence. We're testing up to 4 times in the night and half the time I feel like we dont really know if we're doing right from wrong, is this normal at the beginning?!
I know that work should be the last thing on my mind but I wondered if any of you had any advice or opinions...I'd only been back for 3 weeks from maternity leave and they've been great giving me a month off to start with, but right now I cant ever imagine leaving her when she's so tiny and we cant imagine how long it will take before her bm's become more controlled as they're everywhere? We both feel it would be best for me to take some time out to be with her and look after her, I cant think of anything worse than leaving her at the moment, but I dont know if I'm being over protective and making diabetes out to be harder work than it actually is...to us right now it is the forefront of every day and its a very difficult disease to manage.
Leaving on a plus note...all the hard work is worth it when we see her happier than she has been in months!

 

[semarroy]

The early days are so hard. My son was diagnosed in Oct 2010 and I felt devastated. It was such a hard time. BUT life does get back to normal, just a different type of 'normal'. It took a few months of adjustment and then there was no stopping us as we were determined not to let type 1 spoil our sons life. We took him on a 2 week road trip round California and Nevada - through 55 degree deserts, universal studios, horse riding, long walks in Yosemite etc and he loved it and his HBA is always under 7.5. So these feelings you have now will lessen. The worry is always there but instead of it taking over 100% of your mind, it will just become part of life and your routine. Keep strong. It's going to be alright. xxxxx

 

[jayne15]

Hi Sarburg sorry to hear about your baby girls diagnosis. It must have been a complete shock to you, I hope you take some comfort from other parents on the forum as we all know what you are going through and with time you will start to accept and feel more positive. On a practical note you are still very early into diagnosis and things will be up and down initially. I returned to work after 3 weeks however my little girl was in school, I was personally better when I returned as I was becoming too obsessed with diabetes and smothering my daughter the space did us both good and promoted her independence with managing her condition. In the early weeks she had a hypo every day at school however the specialist nurse did education sessions and developed a care plan for Megan while at school so the teachers managed her condition very well. I suppose the question is who would have your baby anyway whilst at work? if she goes to nursery there is no reason why the staff cant receive training, Your child is classed has having a disability so your employers may have policies to support you whilst you are a carer for example flexible working, annualized hours, make sure you look into applying for DLA as this may give you some scope financially to reduce your hours temporarily until things are more settled. if you have family members caring for your baby request the diabetes team to train them ( my mum received this and does my daughters injections ect).
If you have supportive employees dont rush back until you have everything sorted and you are comfortable with the arrangements otherwise you will just end up going off again. good luck and take care and take each day at a time.

 

[juliebarrett]

Hi my daughter is 4and she was diagnosed just over a year now she use to take hypos without any signs and I was the same as you up to a thousand now she tells me she feels dizzy but at 13 months it wee one can't do that talk to your diabetic team they might suggest dropping her insulin or sending u on a course for carb counting I'm doing the course now because my wee lady has swings and roundabouts with levels she's either too high or too low and they're putting her onto insulin pump but it is very good to learn exactly what's going into it child mouth also it could be that it daughter's ratios at meal Times could b wrong which can have an effect on levels

 

[CambridgeLass]

Hi. How are things settling? The early days are so hard. It takes time for BG to settle, even when a dose is changed the effect is not immediate. It took about a month for us to get the basal just right. I hope you are getting lots of support from your diabetes team. Each day is a new day. x

 

[sarburg]

Well she remains up and down like a yoya really.just when we think we're getting somewhere she spikes a real high and then its hard to bring her back down. Tonight she went to bed on a low so shes had some milk in her sleep but I feel too scared to close my eyes.
We're really lucky to have a supportive consultant and we're working on getting her onto a pump asap which will hopefully help.do any of you have any experience of continuous glucose monitors? I cant get my head around the fact that we don't know whats going on inside her little body through the night, im absolutely petrified.

 

[CambridgeLass]

Is she still waking up for feeds in the night or sleeping right through? Does she sleep next to you/ with you? I'd be more comfortable having her near, it reassures you so you can rest also. I've heard, not yet experienced, that a child will cry out or wake suddenly if they were to have a hypo, and feel hot/clammy. At the beginning from diagnosis the honeymoon period should kick soon so I expect you may see more stable numbers. It all takes time! It is hard I know, as we cant know their BG level. I hope you get your pump soon. I don't know what the criteria is to have CGM funded on the NHS but I would talk to your team about it. Thinking of you x


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