Parents Of Children With Cerebral Palsy

[chinchi]

My DS was born premature at 29+5 last August. Brain scans in SCBU revealed a small cyst on the right side of his brain, and we were told that this could lead to problems in the future, but would be something only determined by time.

DS had a consultant appointment on Wednesday, and we mentioned to the doctor that DS has difficulty straightening his middle finger on his left hand. We have noticed that he favours his right hand, and struggles to open his left hand properly and grasp as well as his right side.

The consultant told us that this is likely to be a result of the cyst, and that it could in turn lead to muscular problems with his left leg. He would like DS to start physio in order to help prevent any long term problems, and also wants him to have a MRI scan in a few months time.

He mentioned a link to cerebral palsy, and depsite him being surprised at how well DS has progressed, he said that it looks like the problems DS is having could mean a mild case of cerebral palsy.

I would just like to know what kind of help your children received in order to help their development? DS is almost 9 months, so he still has a lot of milestones left to reach, but I just think its good to know a little about what were likely to face.

I hope I havnt offended anybody by this post, and any advice/information would be a big help

ds was born at 27 weeks, he is 9 next week.
He has Spastic diplega,(I am sure you have found out that all CP has different names for different areas) His right leg area is his week spot, but as with all cp, it just means that area is the weekest, but the rest of his body is week too.
We have had,
Physio,
Hydrotherapy (ask your physio for this, they will offer it you)
Conductive Education, which is private.
Portage, ds loved this, it is respite with toys and physio thrown in, prob about two hours a week.
Cranial Osteopathy - made a huge diff to ds - private If I was you, I would do it right now.
Horseriding - at the local riding for the disabled association stables. - ask your physio, when he is old enough.
He goes to a pan ability football club, Physio put us on to that.
Occupational therapy, push for an appointment now, as he will need to be known by them asap, you have to think about the future, the sooner they no him the better. and if his hand is stiff he will need help at school.
Speach therapy.
He went to a special needs nursery too.
My best advice is to pick the brain of mums with kids who are a yr or two older than your ds, they will give you so many tips.
Never throw any of your correspondance from the hospital away - keep your evidence.
In the future you might need a statement of educational needs - hook up with your county coumcils partnership with parents they will tell you how to go about getting it ... but they can't do it for you.
Never rely on the school to do a statement, it will take to long and you wont get enough hours.
If his needs become more physical you can claim carers allowance and mobility allowance. if you get this it will increase your child tax credit and you could get a discount on your council tax.
Go on the special needs board, it is not just for parents of kids with Autism (although you would think so, as there are rarely threads on other disabilities) or Educational disabilities, its also for parents of kids with physical disabilities.
You can only make any descions with the information you have today, so never look back and think if only I knew. Finally he is still your son and he loves you, you might grieve for what could of been, but try not to, it will just eat you up inside. I hope this helps and is not to irrelevant.
(I seem to have lost my spell check on the pc, so I apologise for the spelling mistakes)

Hi Chinchi

My dd has developmental delay,no diagnosis but is neurologically atypical.Since being seen by a developmental paed she has had access to physio,speech therapy and Portage (an early years education scheme that does lots of play based stuff as dd is intellectually impaired)They have been fab.

Every child with CP differs,but now you are in the system as it were,your child will be given access to appropriate therapies as deemed neccessary,often coordinated by the paediatrician in conjunction with the multidisciplinary team.

DD is seen at the childrens centre which is fab.DD has received aids like splints and a walker too.

I would suggest you went on the special needs topic on mumsnet and posted.There are mums on there with children with CP of varying degrees of severity and they are all very supportive.

Best wishes,wRINKLY XX