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Here are some suggested organisations that offer expert advice on SN.


(27 Posts)
Flowertots Wed 01-Oct-08 04:57:11

I know it must seem so OTT but I really thought someone was going to die tonight. My dd appears to have a sensory processing disorder which is literally killing us. I really am despairing and don't know what to do. I'm SOOO unimaginably tired it's unbelieveable. I can't think straight!!! I felt like either I would inflict her some serious harm tonight or I would end it for myself just to get some peace.....seriously I've contemplated it just because I'm SOOOOO tired. I need a break
DD doesn't understand fear, pain, tiredness. She can sleep hardly at all and still be wide awake and hyperactive the next day. She wakes up in the night after just a few hours and will be wide awake. There's not even a fear of smacking as she doesn't feel pain or understand the concept of fear. The f*king NHS has a ridiculous waiting list and keeps fobbing us off with the therapy we need so we're having to pay privately which is crippling our finances. Above all else a sensory processing disorder is not a recognised condition in the UK.
To top everything off I found a lump in my breast a few weeks ago and tests have been inconclusive so now need a biopsy. Life is so sh*t

TinySocks Wed 01-Oct-08 06:32:30

My heart goes out to you flower.
My DS has GDD and also has sleep problems, I can relate to being tired, but your case really sounds so much more difficult, I cannot imagine how you are functioning with so little sleep.

I don't live in the UK so I cannot give you advice on who to contact, but I would definitely try to find help from a neurologist on the sleeping front. Sounds like she needs some medication to help her sleep. YOu really cannot go no like this.

I hope someone else comes along with help and advice for you.

big hugs.

amber32002 Wed 01-Oct-08 09:19:57

Flowertots, firstly, ((((((((((((hugs)))))))))))) for you.
Secondly, been there.
Thirdly, don't hesitate to pick up the phone to the Samaritans if you need it, and my thought is that you need to get to the docs and say you are absolutely not coping and are feeling so low that you've considered ending it. That's a big red flag that will mean you get top priority for help. Until they hear you say "I am not able to cope any more - this is it", they often won't act. And they are supposed to give you respite care for any child with a disability, so goodness only knows what they're thinking of in leaving you in this situation.
Good luck. Keep talking with us...

MeganH Wed 01-Oct-08 09:27:44


I've just joined so not sure what your child's diagnosis is, but your message caught my eye as I've been in that situation.

Have you had an EEG? Our son's behaviour and sleeplesness had me at the point where I was afraid I might harm him by throwing him down the stairs when he had got up for the hundredth time that night, like every night ... after several years of it a speech therapist noticed an eye flicker which we'd been told was a nervous tic, and an EEG showed our poor boy was having constant subclinical seizure activity, which was stopping him from learning and sleeping. I felt so bad as I'd been angry with him for years, thinking he was just being naughty.

He has Landau Kleffner syndrome, and never had a 'visible' seizure, and it amazes me how unaware the medical profession are of this kind of epilepsy.

Just a thought! Sorry if you've been down that road already. Hope you manage to get some sleep, it's absolutely vital...have you tried melatonin?

Seuss Wed 01-Oct-08 09:31:56

Flowertots (hugs) I completely understand the no fear/pain stuff and the hyperactivity - that's knackering enough to deal with in itself without lack of sleep thrown in.sad

Ambers right, you need to get yourself to the drs and make sure they know how desperate you are feeling - probably dd too, has she tried medication to help sleep?

Do you have much support in the real world? If there is someone I think you should make sure they know how you are feeling and how tired you are. Please keep in touch - there's loads of people on here who will be able to give you some great advice.(hugs)

siblingrivalry Wed 01-Oct-08 09:59:10

Flowertots, I really feel for you. I have had days when I felt that I couldn't take any more, or that I could walk out of the door and not come back.
I really think that a trip to the GP is essential for you -you don't have to suffer alone.
How are you today? x

FioFio Wed 01-Oct-08 10:50:24

Message withdrawn

Flowertots Wed 01-Oct-08 12:29:07

Thanks for all your kind words. It's so tough because no-one I know understands. Our families don't help as they have the attitude of "you decided to have kids, not us". One of my friends keeps insisting there's nothing wrong with dd and my sister can't understand why I keep asking for help because "mum had 7 of us and never got any help and you've only got 1". If I had the chance I think I'd go on a mass killing spree angry

Got an appointment with the GP for tomorrow morning. Reluctant to speak to paed about it as our local only supplies locums and the last idiot suggested parenting classes just for the sake of it. dd doesn't have any behavioural problems, is polite, well mannered etc but he pulled all this crap out of his backside saying she misbehaved just for the sake of making a referral. I was SOOOOOO angry angry

Sensory processing disorder is usually associated with autism, dyspraxia, cerebal palsy etc. DD doesn't have a firm diagnosis yet. Having checked melatonin I'm a bit reluctatnt to use it as there is no tests of long term side effects. Any other suggestions?

siblingrivalry Wed 01-Oct-08 12:55:44

I was prescribed Phenergan for my dd. My GP is very 'anti' sedatives, but I think he knew I was at the end of my rope. About 3 months ago, dd1 wasn't going to sleep til 11pm. She spent the rest of the night getting up and down, so I can imagine how exhausted you are. The phenergan helped to relax her enough to fall asleep, but it isn't a magic cure or anything.

I know how you feel, when it seems that no-one in RL understands. I have also seen a few crappy uninformed doctors. My dd has a lot of sensory issues too (going through ASD dx). Hang in there, if you knock on enough doors, someone will start to take you seriously.
Good luck with GP tomorrow . x

Marne Wed 01-Oct-08 13:08:26

Sending you lots of hugs,

My family say there's nothing wrong with my dd's, they have ASD and AS, it realy gets to me as they don't have to live with it.

Dd1 was a poor sleeper, we used Phenergan which sometimes helped but seemed to make her grumpy the next day.

Good luck with the GP and make sure you tell them how bad you are feeling.xxxx

PheasantPlucker Wed 01-Oct-08 13:43:59

I don't have anything to add, but wanted to say hi, and hope you can get some of the referrals suggested above. xx

Tclanger Wed 01-Oct-08 13:53:13

Message withdrawn at poster's request.

rivchdesigns67 Wed 01-Oct-08 13:55:33

Know that people out there have been and are going through the same as you - you are not alone although it may feel that way. I went through what you are with my eldest and did not get help. I really really wish I had done. I cannot believe how close I felt I was to harming him/me. So as others have said tell your doctor straight and if he doesn't take you seriously go to another. Do you have an understanding health visitor? Some can be brilliant. Keep pushing, it's the only way. Sending you luck, courage and hugs.

TotalChaos Wed 01-Oct-08 14:02:02

sorry you are having such a hard time, and hope you can get help via HV/GP system.

Re:sleeping - it probably is too much of a weedy suggestion to be effective, but a few drops of lavender oil in the bath and/or on something in her bedroom may (or may not...) help.

Shylily Wed 01-Oct-08 15:03:39

Hang in there Flowertots.I hope you haven't already had all the following advice and come up against a brick wall, but for what it's worth, here're my thoughts.
I'm not sure what type of therapy you're paying for at the moment but wonder if Sensory Integration is what you need.
Have you had a referral to the paediatric occupational therapists? If not, ask your GP for one. I would also phone the OT department directly and ask if there's anyone qualified in Sensory Integration techniques. (If not, wait to see them anyway as they might have some other ideas, but you may as well continue with some private therapy.) If so, tell them what your daughter's symptoms are and how you're feeling and ask if there is anything they can suggest while you're waiting to be seen.(Worst they can say is 'no'.)
Have you got a 'Special Needs' Health Visitor? Again, might be worth asking for a referral to one as they usually have much better links to respite services and therapies than the GP-linked health visitors.
Don't be afraid to phone social services either. I know SS has a scary reputation but it may be worth you referring yourself and asking for a social worker to come and discuss how to get respite/night sitters etc. There are also voluntary organisations who provide those services. The SNHV or SW should know how to access those in your area.
Hopefully you'll be able to get the right help despite not have a 'recognised' diagnosis.
As well as being a mum to 2 under 2 I'm an Australian-trained OT and I used to work with kids with similar disorders but it's so long since I did that I don't have any real therapeutic suggestions. Sorry! sad I really hope you get some help and more importantly, some sleep!
Best of luck.

Tclanger Wed 01-Oct-08 15:47:49

Message withdrawn at poster's request.

Flowertots Wed 01-Oct-08 15:50:25

Thanks again to everyone....sounds so sad to say that I actually feel like I have a group of friends who understand finally....albeit virtual friends lol
Shylily the therapist specialises in sensory disorders and is an OT....AND Australian!!! lol, how weird is that!!!
HOORAY, 1st smile of the day, things can only get better grin

Tclanger Wed 01-Oct-08 15:56:02

Message withdrawn at poster's request.

tink123 Wed 01-Oct-08 15:57:49

My dd has sensory processing problem as a standalone condition. ASD and PDD-NOS has been ruled out, We have had a tough year since dx but a year after therapy with OT we are seeing light at the end of the tunnel.

We had a fab therapist who has just discharged dd. Thank god, cos like you it cripples your finances.

I think you need to speak to your GP as you have a lot on your plate. Good luck with your biopsy!!!

amber32002 Wed 01-Oct-08 17:53:40

Ideas for rest...

Two things - in this week's science magazine it said that the smell of roses is scientifically proven to help restful sleep.

And get the best quality bed linen and pyjamas/nightie for her that you possibly can. No rough seams, no labels, really high thread-count. If her sensory processing's not working properly, it might help her to settle better at night.

And is there a nightlight in her room? I can't sleep in the dark, and am a very light sleeper which gets much much worse if it's very dark in my room (ASD). Might work for her.

Apols if you've tried all this already...

Shylily Wed 01-Oct-08 19:18:25

Glad to (virtually) see a smile! smile
At least you know you're doing all you can. Just remember that when it all seems way too hard (or when some helpful family member puts in their 2 penneth!) grin

Seuss Wed 01-Oct-08 19:52:25

smileglad you're feeling a bit better. My ds goes through stages of waking up stupidly early and DH and I pre-plan who will be getting up with him while the other gets some sleep (or tries at least!). Ignore me if I've just stated the obvious and you already do that but sometimes when you are in the middle of stuff simple things get overlooked. Take caresmile

cyberseraphim Wed 01-Oct-08 19:55:19

Melatonin is quite gentle and you can get milk with melatonin - the theory is that cows milked at night produce melatonin. Could you try that ? Most supermarkets have it.

Shylily Thu 02-Oct-08 13:56:09

Any luck with the GP, Flowertots?

Flowertots Tue 07-Oct-08 09:34:52

Hi everyone,
Thanks for all the encouragement....tried alot of the suggestions and funnily enough the aromatherapy lavender oil really helped. Also dd has abit of a cold so been using some medised which has helped and because of the cold I don't feel guilty about it either.
Sleep still a problem as I've been really stressed about the biopsy which is today. Bruises still haven't gone from all the other procedures and just started a new job so lately it's just been tough....not surprised I've not been sleeping lol!!!
Thanks again. Feel a lot better as have been getting some sleep at least. grin

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