Another for non MRI. DS1 was born at 31 weeks, was hypotonic (floppy) at four days, but was only diagnosed at 19mo when he couldn't walk or talk.
We've had blood tests for Downs, Fragile X and anaemia. DS1 has had orthotics since 9 months, physio since 19mo and is currently 28mo. He's linked to a local children's centre where all of his interventions happen and has a MAPP as well.
I don't know if this will help your friend, but this is what we posted on our blogs when DS1 was diagnosed:
___
As you may know, we took Michael to be assessed on 19th February.
Michael has diplegic cerebral palsy. We are telling you this because Michael is and always will be a beautiful, intelligent and happy boy, and we want everyone to treat him normally and not ask why he isn?t doing this or that by such and such an age.
What cerebral palsy is:
CP is a non-progressive collection of symptoms caused by an injury to a developing brain. It varies in severity and in which limbs it affects and two children with the same diagnosis may have completely different experiences. CP affects the way muscles work because the nerves in the muscles fire incorrectly, causing muscles to get too tight (spastic) or too loose (hypotonic). It isn?t genetic and it won?t get worse. Michael?s is likely to have been caused by his early arrival at 31 weeks.
What it means:
Diplegic cerebral palsy is an official medical tag for Michael having some muscle weakness in his pelvis (which is what makes him wobble) and some tightness in his ankles and hamstrings (which is what makes him unwilling to walk). Diplegic means that his legs are affected more severely than his arms. Michael also has hypotonia, which means that his speech may be a little slow to develop, but that it will happen. He will walk, but it will take some time and he may need some extra support outdoors for the time being. He also has hypermobile joints, which means he is very flexible.
What this does NOT mean:
that Michael will not walk, run or play football (he just may take a year or two longer to get there), that his lifespan will be shortened, that his quality of life will be affected or made less in any way, or that he can?t do what other children can do. He is our Michael and he is no different to how he has ever been.
What this DOES mean is that we have a programme of exercises to do with him, that he will need to start swimming classes and that we will be able to get all of our appointments at Kaleidoscope Children?s Centre in Lewisham. We will have a physiotherapist, a speech and language therapist, and will be put in contact with the Lewisham Education team to make sure when he starts school and nursery that any support he may need will be there. The team will also have a walker like his one at home made for him but at the right height so that he will have support to walk outdoors more.
On the plus side, even though Michael?s version of cerebral palsy is on the mild to moderate part of the scale, we still may qualify for ?portage? which is pre-school education that comes to your home. In the longer term we hope to help Michael to minimise any problems he may have so that by the time he?s 14 or 15 he?ll just need to swim and to do some exercises.
In the short term you?re unlikely to notice anything much different, and we?re very keen that Michael should be treated the same as he?s always been. All that?s changed is now we can get help and support to make sure Michael has support for any challenges that come his way instead of struggling to be listened to. We are a strong family and we will be fine.
We?re posting this to give you a chance to ask us any questions you want to. We don?t want or need any replies saying ?hugs? or ?I?m so sorry?, as there is nothing to be sorry about, but we?re happy to answer anything you want to ask.
A diagnosis is not the end of the world, and often it can be the start of a really positive way to move forward and support your baby.