dla hemiplegia?

[em83]

my son has hemiplegia, i have been refused dla for the 3rd time... im not going to bother applying or appealing .
just out of interest does anyone whos child has hemi get dla?

wow ! you are very on the ball
i am taking in everything what you are saying...about the bedwetting, all i can di is write down as much as possible and hope for the best i hope...
i will look into groups in our area, however i am on strange shifts at work and they have no pattern to them, so what 3 days i work next week, i may not be working same 3 week after, also with 2 younger dcs it would be hard for us to get my son there and stay with him

Em, I would really recommend that you download the Cerebra guide. You could write for England, but if you don't say things in a way that the assessor can tick a box, you won't get it. There are 'key words' they look for. Simple words such as 'requires' 'necessary' 'supervision' 'guidance', etc.

thanks lougle, have downloaded the cerebra guide, i think i have the jist of what needs to be wrote.
however do i really need to write four seperate sections for each answers

such as

ds has a problem with abc

ds would benefit from def

ds should not be able to manage without this help if....

and other children his age can do this without any extra support?

also will they write out to doctors/physio/school etc?
what if thet dont back me up ?

I did, em. Not 'sectioned', but I just made sure that each answer detailed the problem, what intervention she needs, what would happen if I didn't give it, and how other children are/aren't/could/would.

for instance section 17
therapy

tell us about the childs therapy during the day-

i have wrote " x has a 15 minute excercise program which must be done before his splint goes on everyday, it stretches his muscles and tendons. he also has arm and hand stretches that need carried out every day, if these excercises and stretches arent carried out then it woukd cause his tendons to tighten which may have a serious impact on his walking and arm functioning skills!

does this sound okay ? if yes what can i add to it re normal children ?

hi em83 just joined on here i have a 5 yr old boy who was born with right sided hemiplegia so will try and help. dla your child is more than intitled too so keep fighting for it maybe you have worded everything wrong in the form which is easy to do as they keep asking same question in a different way. did you write all therapists names and contact details on the form ? even if you have no reports to send they will contact them for the reports. do you see a consultant yearly ? they need to referer for ot this is important for ur child as are all the other therapists. if you feel your son needs a wheel chair then u should get one dont take no for a answer any equipment thats helps your son you are intiltled too making his life easier. your son is likely to have behavviour problems which i see as natural as like my son daily life and activites are so much harder some even impossible. i watch my son stood back in the park watch other children climbin etc and i can see in his face how gutted he is that he cant get involved all these things will build up some emotions to which as mothers we end up coping for it all its always the one they feel closest to that they take there frustration out on my point being therapists wont see there behaviour so you come to the decision whether your son has behaviour problems i could write a book on this condition now lol if you need to know anything else just ask

em83 just read your last post you would be best sayin your son has 15 min sessions throughtout the day which is not a lie because the more exercise you do the less chance of the muscle having a spasm etc. would leave the "if these exercises arent carried etc out cause your making it sound like after the morning stretches his walking is fine and i know thats not true but it just sounds like that

em - you also need to discuss how ds reacts - eg if it takes 20 minutes to persuade him to do the exercises because he doesn't like them - if he needs adult support to ensure he is doing them correctly and not rushing because he doesn't like it, etc.

i would take out 'may'. the physio has prescribed this exercise routine to ensure that his tendons do not shorten. etc. without these exercises his tendons will shorten, which will impact his mobility further. etc.

Em, you need to be much more explicit than that. Pretend the person reading the form has no knowledge at all.

"DS has hemiplegia which affects the use of his x side. This results in the muscles being under-used and in turn they can tighten, causing pain and malformation. In order to minimize this, DS wears splints on his lower limb for x hours each day. Before he can apply the splint, he has to do an excercise programme prescribed by the physio. This is hard work and painful, so DS needs adult encouragement for around x minutes prior to starting. He also needs an adult to supervise and assist him with the programme, which takes 15 minutes. The programme consists of (insert detailed description of stretches, etc) and must be done thoroughly to be effective. After the excercises are complete, an adult has to check DS's skin for signs of damage, then apply the splint, checking carefully that it is positioned correctly and that the straps are tightened correctly. This takes a further 10 minutes. At the end of the day, an adult again needs to check DS's skin when the splints are removed and massage the skin for 5-10 minutes to ensure good bloodflow.

If DS did not do the excercises, his muscles would tighten and his function in his x limb would deteriorate. He would then require more extensive aids to assist him with walking.

The vast majority of 7 year olds do not need support to carry out specific excercise plans to maintain limb function, and are independently mobile."

Just an example & most of the detail is made up because I have no knowledge of splint use, but you get the drift - S P E L L I T OUT veeerrryyy sllllooowwwlllyyy - if it isn't written, it doesn't happen.

just a quick thanks guys, you really know your stuff
i will be back on later around 8pm, as a bit busy at the mo

Hello Em,

My son is mildly affected. He has very little use of his left hand and finds walking OK but running difficult - same with balancing things and climbing etc - and of course it spreads into more than just that. He does not get mobility.

When we applied, which was 3 years ago, he was more affected. But we've done lots of different therapies since which have helped him a lot. So I reckon next time we'll get lowest rate.

It is worth pursuing. We've used the money they have given us to pay for ds's therapies.

I just kept going with it. I was determined to not get stressed, but just to keep going. Because I knew they were waiting for me to give up.

DS is mild. But what the NHS offers in terms of therapies is pitiful. I feel the DLA pays for what he needs and has change his future already so much that in the long run it is saving everyone money.

im back [grin[
hello katie and welcome to mumsnet
please tell me more about your son? is it arm and leg thats affected or either ?
thanks for the info abput what not to include in the forms , any more tips on filling this hideous form in is appreciated

nickoftime i hadnt even give it a though to write how long it takes to persuade him he is at that age where he doesnt want to cooperate with anything , so takes a while for him to come round to the idea of wearing his splint.. so thanks , your comments !

lougle you are a star !!! your like a walking encyclopedia
anymore advice/tips for form filling you have is very greatly appreciated

i am making notes on everything everyone says!
I AM REALLY GREATFUL TO EVERYONE WHO HAS CONTRIBUTED !!!

anyone got any advice on sections 7 and 8

walking outdoors and does the child need someone with them when they are outdoors?

i have wrote that he is prone to falling over quite frequently therefore supervision is needed especially on uneven surfaces and stairs, although he can manage stairs he is very unsteady on them and needs guidance when using them, which often means holding his hand which normal 7 year olds wouldnt have to do ... looking at this i dont think this is enough and its too brief !

so any tips are welcome

Stop now with the thanks I told you I was just being grumpy.

Questions 7 & 8.

When talking about walking outdoors, the form is very clear that it is about walking on fairly even surfaces, not hills or slopes. Having said that, commissioner rulings have held that kerbs are relevant to mobility so should be considered.

Qu 7 is more to do with the physical aspects of mobility, and aids, etc.

Qu8 is more to do with supervision needs.

thanx
so do i beed to add ion these parts that other 7 year old children dont fall etc?

skewiff sorry hadnt realised you had replied
its great to hear the therapies are having such an effect on him
which therapies does he get ?
does he wear a leg splint?
how old is he?

[nosy emotion]

Yes, you will need to be detailed and explicit. So think of all the situations in which he needs assistance when walking outdoors. Does he need to be steadied at the kerbside? Can he judge the amount of time he would need to cross the road, or does he need someone to assist him? Does he ever stiffen as he walks, and could that happen half-way across a road? Does his balance deteriorate to the point that he needs lots of supervision?

What you have to really remember is that this isn't about his feelings, it is about his care and mobility needs. So, if he is prone to falling, but, say, would only scrape his knee or his hands by doing so, they could say "Well all 7 year olds fall sometimes, and you wouldn't stop a 7 year old from playing football in case they scrape their knee. It makes no difference that he is doing it because he is walking down the road." However, if his falls would result in significant injury, or would endanger him, then you can make a much stronger case for his need for supervision. So you will need to make it clear that he needs supervision to ensure that he doesn't sustain significant injury, and so on.

It sounds stupid, but just saying 'he falls over' won't do it. It is the consequences of that which will do it.

i dont think im going to bother applying for it, the form is too complex and im too crap to fill it in, form filling just isnt for me, thats probably how ive been refused 3 times in the past

Oh em don't let it beat you! Could you see if there are any SN charities locally that would assist you with the form?

If you don't think, on balance, that he needs more help than a typical 7 year old, fair enough. But if you genuinely do think that he does, don't let the form put you off.

Do you see Paediatricians or other professionals at all? Do you have recent reports which would back you up?

im just sick this form is a pain in the behind

me and dh both think ds needs more help than the average 7 year old, but writing that down on paper is very hard..

as it is he has just saw his paediatrician today, he sees her 2 times a year and the physio monthly,hopefully he will get reffered back to the ot in a couple of month....

dont have any kind of reports tbh ...

Hello Em,

DS is 3 1/2. Since he was 6 months old, when we found out, we've done loads of hyperbaric oxygen therapy with him - we live down the road from a tank. Also Scotson technique since he was 18 months old. I do physio stretches too, but he does not really have proper physio much.

Both of these therapies have helped DS loads and he doesn't wear a leg splint. He just has inner soles.

I spend hours a day doing these things with him - it is very very time consuming and then try to fit in a normal life for us as well.

Most of the time it feels like madness and I can only get away with it because he's so young and my only child. He doesn't object to any of it yet ...

If you have any other questions feel free to ask.

hello em dont let the forms get the better of you, you and your son are intitled to the help from dla if your struggling on how to fill the form in ring your local citizens advice they will fill the form in with you and they do this daily so its easy for them it wont take them long and they will put in the words they look for. my son has right sided hemi affecting both his arm and leg he gets physio, ot and wears a glove ( cant think of the name of it ) its fantastic for opening of the hand stops the constant fist grip finer movements still very poor but i have seen inprovement if your soon is affected in the hand you want to have a word with your physiotherapist about trying it out. my son has had 3 different splints but to be honest i find his walking pattern is worse and he complains about it so he dont wear it much and in his case its not made his leg any worse for not wearing it. my son has mood swings which is mainly through frustration if he is trying to do something and cant succeed he will throw it in temper. everything our children do is a challenge and they have to work extra hard to be successful. can i ask was your son born with hemi? i had never heard of the condition till my boy got it but its not rare i have heard of so many children born with the condition.

sorry all, was in a foul mood yesterday and just could not be bothered
katie
my son had a stroke when i was 27 weeks pregnant with him, so he was born with left sided hemi...
he is doing better than everyone said he would...
my physio is not very good tbh, we had an appointment with her and paedtrician yesterday as i want him reffered back to the upper limbs clinic at another hospital as he used to go there for them to look at his hand again but they were reluctant to do this
they said his hand will only get stronger if he uses it more

re the spling my son HATES it with a vengance and refses to wear it at times, he is now showing more tightness in his leg ,he wil be fitted for his 6th splint in a coupe of weeks and he is going to have to wear it !!!
his left leg was a couple of inches shorter than the right a while ago but he had his left shoe raised slightly so his leg caught up at this time he wasnt wearing the splintjust the raised boots, so there was 6month off the splint at one point.
i have also noticed his left arm is slightly thinner than his right arm, i mentioned this yesterday and they said he needs to use his left side more easier said then done...

skewiff i googled scotson echnique as i have never heard of it before it looks interesting, is it expensive? is it only for prem babys?

iv decided i am going to give the form 1 last shot !!! i know that you great people will help me along the way

Scotson technique is for any one with any kind of brain injury.

It is expensive, but only as expensive as any of the other therapies ie brainwave, bobath etc

There are charities that help pay for it and we are lucky to be helped by one of them. So I would look into it. I'd worry more about the time involved. Its recommended that you do 1.5 to 2 hours of therapy a day.

I'm certain its helped our son. But its always so difficult to know what would have happened if you hadn't been doing all the hours of work. So, of course, I'd never be able to say for sure.