hf1

Im loosing the will to live!!

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charlibunny
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Re: Im loosing the will to live!!

Postby charlibunny » Tue May 04, 2010 11:56 am

Velvetsteph wrote:Part of the problem here is we're all comparing healthy children (mostly) to quite a poorly child with special needs...
If the nap think doesn't work speak to her consultant as children in pain don't sleep well and she may need help with sleep (can't remember what it's called but there is a medicine that mimics the natural sleep hormones)
Is one bottle enough for her at that time? Perhaps she's still hungry and needs more!
Does she get multivitamins/minerals at all?

I do agree thought that I'd let her nap in the day - can you nap with her in the day so you don't feel so awful due to lack of sleep too? :hug:

Your body's natural steroid levels are at their lowest at around 4am so it could be she is her most uncomfortable then, this is why asthmatic children tend to wake at that time too...

Massive hugs :hug:


Im going to give her consultant a ring anyway, her lack of food is worrying me, she just refuses to even look at food. At the moment she is getting constipated, finding it SO hard to poo her bum splits, bleeds and the piles come out :( She has special anasthetic cream but it does not help much. I tried her on half the reccomended dose of movicol but she had explosive poo for 4 days and was in just as much pain :x I am not allowed to give her multi vitamins, because of her Bowel inflammation and her low iron levels im not allowed to "mess" with her vitamin intake, they need to find out how she is doing with blood tests.
Im worried about the colour of her skin, i had 2 people stop me in town and say "ooh what a lovely tan your baby has" It's not a tan, he whole body is like it. This time 2 weeks ago she was pale :(

She is in bed now, sleeping?? no!! lol!!!

Very very interesting about the natural steroid levels, do you know how i can find out more about this??

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charlibunny
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Re: Im loosing the will to live!!

Postby charlibunny » Tue May 04, 2010 11:57 am

I have read all your replies, thankyou for your detailed responses :) I wish i could nap but Molly is here an DH is off to work :(

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Annette
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Re: Im loosing the will to live!!

Postby Annette » Tue May 04, 2010 12:02 pm

FC you have a better night's sleep tonight and I really hope the consultants can work out the best treatment to make Sophie feel better :hug:

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zoeyboo
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Re: Im loosing the will to live!!

Postby zoeyboo » Tue May 04, 2010 12:07 pm

Oh Charli :hug: I wish I lived closer to you, I'd come round & look after Molly so you could catch a nap :hug:

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Velvetsteph
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Re: Im loosing the will to live!!

Postby Velvetsteph » Tue May 04, 2010 12:16 pm

charlibunny wrote:Very very interesting about the natural steroid levels, do you know how i can find out more about this??

I don't I'm afraid - I was told it by one of the paediatric registrars when Grace was poorly in March and needed inhalers...

Google isn't enormously helpful but this http://endocrine-disorders.suite101.com ... d_hormones mentions immune disorders but that's a shot in the dark...
It could be her body's natural hormone/steroid levels are low hence the problems she has but again I'm out of my depth here...

Eeek to the skin colour that sounds like Jaundice in which case she might need to be seen today...

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megansmummy
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Re: Im loosing the will to live!!

Postby megansmummy » Tue May 04, 2010 12:17 pm

awww bless her heart :( :hug:

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charlibunny
Cloth Nappy Disciple
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Re: Im loosing the will to live!!

Postby charlibunny » Tue May 04, 2010 12:21 pm

Velvetsteph wrote:
charlibunny wrote:Very very interesting about the natural steroid levels, do you know how i can find out more about this??

I don't I'm afraid - I was told it by one of the paediatric registrars when Grace was poorly in March and needed inhalers...

Google isn't enormously helpful but this http://endocrine-disorders.suite101.com ... d_hormones mentions immune disorders but that's a shot in the dark...
It could be her body's natural hormone/steroid levels are low hence the problems she has but again I'm out of my depth here...

Eeek to the skin colour that sounds like Jaundice in which case she might need to be seen today...


They have mentioned Mass/mast cell disorders? Not sure what that is. She has gone yellow twice in the past, been rushed in for blood tests but her liver function has been fine :roll: They can't explain why she goes this colour. Her eyes are perfectly white, which is good i suppose. I will take a picture of her when she gets up, i can't compare her to my skin as i fake tan :giggle: but i shall sit her next to Molly.

Going to google some more....I can't get through to the frigging allergy nurse or consultant, nor her Community pead :x

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charlibunny
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Re: Im loosing the will to live!!

Postby charlibunny » Tue May 04, 2010 12:26 pm

Annette wrote:FC you have a better night's sleep tonight and I really hope the consultants can work out the best treatment to make Sophie feel better :hug:

Me too, she is sleeping now :wine:
zoeyboo wrote:Oh Charli :hug: I wish I lived closer to you, I'd come round & look after Molly so you could catch a nap :hug:

Aww thats nice thankyou :hug:
megansmummy wrote:awww bless her heart :( :hug:

She can get quite poorly but she is very happy/cheeky and naughty :)

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pinksalmon2001
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Re: Im loosing the will to live!!

Postby pinksalmon2001 » Tue May 04, 2010 12:33 pm

No advice hun but I really hope you find a solution so that you can all get some sleep very very soon :hug: :hug:

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