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Cerebral Palsy

My twin boys born pre at 31+3 weeks now nearly 11 months or 9 corrected have today been diagnosed ith Cerebral Palsy (Dystonic cerebral palsy affects body tension or tone and diplegic affecting mainly the legs) hopefully they will walk if they are sitting before the age of 2 just a shock really as never expected this thought it may be reflux?!?!? Any info from anyone would be appreciated we have been given loads of leaflets and forms to fill in for Disability Allowance.

Max and Milo nearly 11 months and Luke nearly 2


  • Hiya, tried to reply the other day but BE ate my reply! GRRRRRRR!! Can't help on the CP, but just wanted to give you some tips about completing the form for Disability Living Allowance - we've only just got it for George (now 15 months) for Down's syndrome, and have only been awarded the lowest rate, but its better than nothing!
    The form is a right pain, but the rule of thumb is to set out your case making things look as bad as you possibly can. With the reflux, put down every extra minute it takes you to change/wash because of it. You have to keep reiterating that the boys have CP and how this affects them day to day - even if its not that bad at the mo, put down anything that is even slightly more than a non-affected child would need - for example, we do lots of physio exercises with George (disguised as songs and games!), and so we whacked those down as what 'extra' he needed... although I would have probably done the same sorts of games etc had our baby not had these needs!

    Don't be surprised if you are turned down (people often are, they're really strict even if you have an official diagnosis), and make sure you photocopy your form before you send it off - as even if you are awarded it, it has to be reviewed when the boys are 3, to see if you are entitled to the mobility allowance. This is like an extra payment, but they can't be assessed for it until they're 3. When you have that, you are also able to apply for a blue disabled badge for the car too.

    Hope that helps!

    S x
  • I agree with Mrs S. I had to fill in the DLA form for Elizabeth as she has a colostomy & stoma bag (plus a few other things). Advice for us from a support group was to fill in using the worst case scenario. e.g. sometimes I may have to change her bag during the night or sometimes it can cause her pain if she gets a skin reaction - this doesn't always happen but I put it down as worst case. I was lucky enough to find someone else with a similar situation who had filled in the form before, so I copied a lot of what they had put. There is a lot of repetition I'm afraid, just keep repeating yourself to get the point across! I also got our paediatrician to check it for me - he was quite familiar with the forms so a great help. Is there a medic who could help you out?

    Sorry to hear about your boys. I love their photo btw (in the twins forum).

  • Hi Soda,

    My son is 11 now and was diagnosed with C.P at 18 months old, although I was repeatedly telling the 'professionals' that something wasn't quite right. He tried to come at 28 weeks but was stopped, but the neurologist is unsure as to whether he had the bleed then, or when I took an allergic reaction to the meds to stop labour, whether that was the cause. My son had a brain scan and showed quite extensive damage, BUT he is fantastic. The only prob he has is with his left hand side of body, but mainly leg (tendon tight so foot comes up) and some diff with writing (takes a long time). He is very determined and will not let anyone help him unless really frustrated. We have been for nearly every treatment poss over the years and although it is quite diff when ch with cp are younger, as some need more support , as my son got older he is now aware of what he needs to do to improve his posture, fine motor skills etc. Any further advice you are welcome to contact.
  • Ta girls i getting help boys going into daycare an extra 2 1/2 days so staff can do things with them, physio getting things in to help me with feeding, Cit Adv coming to help with filling in forms. Milo sort of trying to crawl and both feed themselves finger foods great also Milo can hold his own bottle now too.
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