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Mumsnetters aren't necessarily qualified to help if your child is unwell. If you have any serious medical concerns, we would urge you to consult your GP.

lifes not fair - hand holding required

(33 Posts)
chocolatecakeystuff Wed 06-Feb-13 22:52:08

Am mummy to dd aged 8. Was born healthy, reached normal mile stones untill age 5/6. She started to wobble a little more than the other children, which got gradually worse.

Last may we were given the news that she has a degenerative neuro condition.

n she's no long able to walk, talk, eat properly at at times breath properly. Also affects all coordination & has a tremmor.
She has fits & can't see or hear very well. Also effected her memory & general understanding.

Having one of those days where id really like to burry my head in the sand. She's such a happy little thing & I know that should make it ok. And most of the time it does. Just having a wobble today. Wish it would all go away :-(

chocolatecakeystuff Sat 02-Mar-13 13:27:13

Thanks guys :-)
I have great support in rl from friends/ family, but minmooch I know exactly what you mean.

When everyone else comes away from parents evening grinning & proud of they're children I normally leave depressed & dread school report time knowing I'm only going to be told dd is behind the other children for eberything & hasn't hit any targets.
However all the teachers/ staff have a real soft spot for dd which is great.

She's a bit tired again today so were having a douvet day with some films & ice cream. :-D when I say we... I mean I, as dd fell asleep 10 minutes into the film haha

chartreuse Sat 02-Mar-13 09:59:20

Sending lots of love and support to you and your lovely dd thanks

dikkertjedap Sat 02-Mar-13 09:54:07

chocolate I just read your thread. What a brilliant little girl your dd is and what a positive attitude she has!

Life is not fair.

I am so so sorry what your dd and you are going through.


HollyMadison Sat 02-Mar-13 09:43:43

Sending you love and hugs from halfway round the world x

minmooch Sat 02-Mar-13 06:52:59

Chocolate thank you for letting us know how your precious DD is. I'm sorry that the scan showed more degeneration - it is terribly distressing watching and knowing your child is deteriorating and there is nothing you can do.

I am so pleased to read that she is happier again - that must bring you some comfort.

Do you have good real life support? I find having an ill child so lonely - friends are amazing but it's hard to see and hear how their children are leading their normal, happy, healthy lives. (I have another son who is happy and healthy so that last sentence is hard for me to justify really).

I am thinking of you.

chocolatecakeystuff Fri 01-Mar-13 20:26:44

She seems a bit more like her usual chirpy self today.

Neuro called earlier to say mri shows as expected further degeneration in her cerebellum, so just the next stage of the illness taking hold. Have been referred to leicester for a gastronamy too before she's completly unable to eat.

But she's happy again today so I'm happy xx

minmooch Fri 01-Mar-13 06:52:03

How are you chocolate and your DD? Any news from the MRI?

Thinking of you xx

Homophone Thu 28-Feb-13 22:03:43

Sorry how shit. Hope you feel stronger soon.

Purplelooby Thu 28-Feb-13 21:44:53

Sending huge hugs your way xx

pinkbear82 Wed 27-Feb-13 18:04:31

Sending lots of hugs to you and DD xx

chocolatecakeystuff Wed 27-Feb-13 17:57:06

Thanks for all the kind messages guys.

Hopefully glasses might help, guessing they'll send an eye dr over to see her while we're on the ward, I know we've definatly got the neuro coming to talk to us. Her left eye is squinty too this afternoon. She's rollinga around the floor atm telling me she's too tired to sit up :-s

Maybe increased csf, tho they haven't said they'd do another lp which they'd normally do (had lp bone marrow biopsy & muscle biopsy last year not keen to repeat any of these haha)

Maybe she's just coming down with a virus or something but she's definatly not her usual cheeky self.

DrinkFeckArseGirls Wed 27-Feb-13 17:41:57

Oh no, just read your last post. We're thinking of you. Do you have any help? Friends, family?

DrinkFeckArseGirls Wed 27-Feb-13 17:39:28

Oh, OP. So sorry to hear about your DD. Good to hear she's happy in herself but you definitely need some handholding. Life is shit at times, esp. when unfair on our kids.

Lucyellensmum95 Wed 27-Feb-13 16:18:44

Oh, i couldn't not post - so so sad and angry for you - lots of support on this board i am sure because there will be other parents who have faced such heartbreak - It makes you feel like raging doesn't it, but who do you rage at? God?

<<hugs and hope>>

cestlavielife Wed 27-Feb-13 16:04:22

ah hope they can maybe find something treatable - could be sign of increased csf pressure which could be easily treated with shunt or ventriculosotomy? i think that may be why they want to rush for scan?, as can be treated. or as you say maybe just next stage... glasses might help... sad

chocolatecakeystuff Wed 27-Feb-13 14:54:16

Soooo after a few really bad days, dd really not with it, and not herself dd woke up yesterday morning with a squint.... she definatly didn't have it the day before. Hotfooted it to the gp - who phoned the neuros at oxford jr... who phoned within half hour dd is now going in for her 4th mri scan tomorrow.

Car filled with diesel bags packed etc etc. Bit worried normally have to wait 3 months to get a slot there and this time its only a 2 day wait... hmmm

Neuro said sounds like the next stage of the illness taking hold. Gp was lovely, wasn't our usual doctor (who is also very good) gave us loads of information about squints & treatments, but was clearly concerned. (Not to mention very interested)

Dd will have to be put to sleep for the scan... she's not very impressed.

hellhasnofurylikeahungrywoman Thu 07-Feb-13 23:08:14

Second your local hospice, I work in a children's hospice and we take self referrals from families. We offer respite either at home or overnight/longer stays in the hospice, family support and sibling support. Not sure where you are but there are some lovely hospices out there and they are nothing like the adult model, ours is very much a place of fun and happiness as well as of support at end of life.

chocolatecakeystuff Thu 07-Feb-13 23:04:16

Thank you, its something I will have a think about.

BeaWheesht Thu 07-Feb-13 22:59:59

Google your local kids hospice and ask if you can self refer.

Obviously I've only been to our local one but its an amazing place - not sad or scary at all. Lots of fun for the kids and special activities for any siblings and time for you to get a break and know that trained and caring people are looking after your dd. they also offer over the phone support and help with everything, seriously you should consider it.

chocolatecakeystuff Thu 07-Feb-13 21:49:21

Minmooch you've got it down to a t there.

Had never though of a hospice tbh.

Had just had a referral to make a wish from cbit, who bless them helped us out even though really were a bit out their remit.

Today is a better day. Looking forward to half term, where I plan to burry my head in the sand, ignore all the logistic paperwork & medical letter that are piling up on my desk & enjoy dd for the week.

minmooch Thu 07-Feb-13 19:17:49

Oh Chocolate I am so sorry to read about your little girl she sounds like a real trooper. My DS was healthy until just before his 16th birthday when he was diagnosed with a brain tumour. I too have watched my son deteriorate. You are so right that it is not fair for our children to suffer. As parents we have to grieve for our children, grieve the hopes and dreams we had for them and grieve the hopes and dreams they had for themselves.

There is no respite when your child is ill. It is all encompassing. It is cruel and not fair in the least.

Sending you hugs xxxx

BeaWheesht Thu 07-Feb-13 18:00:48

What about the local children's hospice? I know our local one will welcome a call for a chat anytime of the day or night. might help?

But yes life's so bloody unfair sad

MammyKaz Thu 07-Feb-13 17:02:55

Chocolate your situation is truly unfair. You've every right to want to escape from reality - I hope you do get to manage that somehow, once in a while. Hand to hold & hope today is a brighter day.

cestlavielife Thu 07-Feb-13 16:44:35

ife can be cruel...
do you get support from a hospice?
as you say you can get confort from the fact she is not upset, but yes you do know the bigger picture.

i hope you can get support from a hospice and that you can reach out to charities like makeawish etc who can give you both treasured memories.

chipmonkey Thu 07-Feb-13 00:36:21

<<HUGS>>> choc.
How awful a thing to happen to your little girl. It must be heartbreaking for you. I've had my heart broken too, my little girl died suddenly, but in our case, we went from having a beautiful little girl to no little girl at all in minutes. I have no idea what it must be like to watch her deteriorate slowly. There's no point in me saying anything trite but I wish you all the strength in the world xxx

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