Update got awarded middle rate care for 2yrs so worth all the hassle lol backdated to 25/4/2012 to as is tax credits fantastic. Cheers for the support guys Any ideas how long it takes DWP to pay it?

What was his age and what if you dont mind me asking his main problems? I just got a report from GP and HV and will be very surprised if he doesnt get it - they have backed me 100% I think DLA think your lying to them but ive been honest but will see what happens not long till 11th

Thanks for the support I hope you son is well now... Rhys had his 1st Christmas in 3yrs where he was well enough to enjoy it. We have gone through years of illness with him and like your son he was very ill from birth he almost lost his life 2x and was only weeks old he spent a long time in icu. Now he just battles on he was ment to be ok after his surgery professionals said the 1st yr he'd be catching up and then he'd have no other problem but 3yrs on he needs a lot of support and medical intervention. I'm just happy that this was his first Christmas he fully understood Santa etc and was well enough to enjoy it. Thanks again for supporting words I hope you had a fabby time with your son x

Wee update, have a date for tribunral - 11/1/13 so fingers crossed that we will get it Rhys has been much worse these past few months since September he has been on a steroid and antibiotc every 4weeks - he was rushed to hospital 2x once by ambulance form home and needed Oxygen. He had a fabby Christmas tho lol Fingers crossed that he is awarded this as it would make a huge difference - I wouldnt need to stress each time Im off work as I only get 5 days paid per 12mths Im on 8 days I think but not sure when I took my 1st in the 12mths. Thanks for the advice and support folks x

He needs watching over and given his inhaler at night especially when its colder or he has a cough - I compared him to my own 3yr old I still have all Cayden's info in his red book and when comparing him to Rhys its clear to see that there are huge comparisons. I have there WSR and it says that all night care is age appropriate so sleeping in a cot in my room with a sensor monitor incase he stops breathing is age appropriate - I have bunk beds and Rhys has a bed to sleep in but I cant put him in it because he needs so much help at night he wakes his brother (this is when hes in my room so what will he be like in his own bed in his own room with his brother)?? I remember when Cayden and I moved to our house we are in now - we are a top flat and he was 2yrs old (2 in Nov and we moved here in Dec) within a few months he was walking up the stairs (with supervision obviously) without a problem - Rhys is unable to walk up them he can do about 8stairs with help then needs carried as he is so breathless. When Cayden went to bed from 3wks old he needed checked (and at that age was in the crib next to me) but that was him never a problem even now at 6yrs he goes to bed and thats him I check him when I go to bed and thats it. Rhys often needs to be watched over. Same in the day time he needs watched over to make sure he is not over doing things he cant walk far outside and inside he mainly does activities that involve little movement (his cognative development is amazing ) but we need to do these things with him - there isnt much he can do alone as he needs to be monitored, like my friend and I had our kids 8mths apart and when Cayden and K played they done so in her bedroom at 3 and 3 and 1/2 they were we checked them every 20-30mins but Rhys needs someone in the room all the time - the same with his eating he needs a higher calorie diet and needs to be fed to ensure he gets the calories (as his chest muscles work 2x as hard he has 1 fully functoning lung and 1/2 lung which is damaged due to being squashed in preganancy) hence his problems and the need for a higher calorie diet he is only 13kg (28lbs) most 3yr olds are 40lbs give or take an he is really skinny. Thanks for the support guys it helps xx

Thanks Zonker im sure things will work out I have appointment today with my rep and from our discussion over the phone she said she thinks they have been pretty harsh in making their decision, she also says the info I have given is ace but I dont think its about the condition in the DLA SofR they say all monitoring is age appropriate so will see what she thinks about what angle to approach. I did think watching over a 3yr old at night was good grounds but apparently this is age appropriate which is rubbish im a Social Worker and have trained in child developmental stages but im also a parent of 2 children and know from my 1st child that this is not appropriate. Im also pretty clued up with his meds (which most parents of sick children are) I know what he gets and what the effects are if he doesnt have it. Im also very supported by family when he is unwell and we need to sit up with him all night my mum and I take turn around, she also works full time and is on DLA herself (mobiity she has reumathoid arthritis and her discs in her back have been fused anyway she is in lots of pain daily her next pain relief is another major opp or morphine) but she gets on with it she is in admin so still able to work and help us with our son (yeah she is a super star) if it wanst for her help i would have had a breakdown by now with work etc... I have a great partner who now works p/t because of his illness, my 6yr old son is a wee star he has had to cope with this to - however his behaviour at school last yr P1 was awful and I think the 3yrs of being shoved from pillar to post when his brother has been in and out of hospital - his brother is unwell at home we cant go out he suffered a great deal (prob looking into it more due to profession but it happens). I will be making a point in saying this as I think its important and ill make sure my health visitor put it in her report (my HV is a staff nurse and worked in ITU she knows my sons surgeon very well). My boss also told me to do a chart with all his clinics and the apps in it so visually it can be seen which i have done and looks amazing when you see it visually it hits home how many out patient apps then his 26 GP apps in 10mths to go with it... Im ever the optamist Anyway thanks for all the advice will see what happens today and on Monday, then we await a date

I am currently waiting on a date to go to a tribunal so hope it won't be long. I have also received documents from dwp and seen the statement from my son specialist she put that he is moderately to severely effected by his condition and his prognosis is unlikely to ever recover. I spoken with my health visitor today and told her all about it (we don't see her often as he has so many other professionals) she was so angry and is coming up to see us on Monday - she is going to give us a supporting letter and she is getting his .gp to do one also... this will be done quite quickly my surgery are pretty good and supportive of his condition. In reply to above statements I have read all this he fit middle rate care hands down I'm a social worker so I find it fairly easy to understand I just don't understand how DWP can refuse him with the evidence we have already submitted.

Well thats my point, my son needs this help and support where other 3yr olds dont... He was born with a condition and now has a chronic illness to go with it, i would prefer it if he had none of these things wrong with him and he was able to go about like any other 3yr old... He is on his 2nd lot of steroids and antibiotics in 4wks and his inhalers are increased. He also has a tablet at night for his asthma which he needs supervised to do... At times like this when he is unwell he needs monitored at night, on Monday night I was up from 2am with him as he was sick (not because he has a bug he is sporadiclly sick due to his repair) then I was watching his breathing which was laboured so he needed his inhalers. He is such a happy wee thing and never lets it bother him (he has no option really as hes been like this for 3yrs). I find it hard that they decline him DLA when he clearly requires extra support... He is on the Special Needs System/Database for Scotland with Chronic Illness and also requires a higher calorie diet as his chest muscles use up the energy/fat he gets from a normal diet he puts on no weight and grows slowly he is currently in some 12-18mths clothes and others 18-24mths he was 3 in July... We also live in a top flat we need to carry him up and down stairs, he cant do soft play and time at parks are limited as its colder now this hits his chest and he is unwell all this is when he doesnt need hospital treatment... He is an O/P in 6 different clinics and his surgeon advises that he may need more surgery in the future. I am so angry at the way people are treated by DLA this money is not for me or my needs its to offer my son better quality of life and provide things he needs like anti allergy bedding, money for heating (its not cheap) and money for all the extra food we buy him to eat or make meals etc these things are expensive. Thank you for your comment will hopefully get a date soon...

Hey 5yrs later im in the same position as you mich, my son is only 3yrs and he is on the special needs database for Scotland with Chronic Illness he had a diaphragmatic hernia when he was born (this stopped his lung from growning he has 1/2 a left lung) this caused the chronic illness... I was so angry as my letter was 3pages long detailing everything... My partner (who is not his biological father) has gone part time to look after him... He had steroids and antibiotics and amber plan (4 puffs every 4hrs) on 18/09 and on 17/10/2012 yip he is back on steroids antibiotics and amber plan but you know what DLA say this is age appropriate... He never sleeps all night usually up for inhalers and has gastric episodes due to the repair but this is all age appropriate so im very hopeful that at the tribunral he gets middle rate care im up and down all bloomin night with him and in and out of hospital... Thank you I searched for this to see how you got on and was so happy he got it as it makes all the difference.... Without mobility I could afford a newer car which I need as he cant walk far at all... I await my date....

Ha I have been doing this very thing... My son is 3yrs old (and its 2012 lol) its a bug bear he is on a special needs system for chronic illness and after appeal they still said no... I am waiting to go to a tribunral oh hope they know what they are in for my letter was 3 pages long detailing each thing like inhalers etc but no they say all these things are age appropriate.... My ****