Facing the unknown and how to cope

Nicola1980

Hi all,

I'm new to this and never thought this would be something I'd be writing!

My baby is 6 months old. He has HIE grade 3. He is currently meeting his milestones but has left side preference. His grip on his right side is 'within normal limits' but appears to me massively different from left. He only uses 2 fingers and thumb to grasp. His right side is normally fisted but it does open when we engage him. His right leg moves less but again is 'within normal limits'. It seems clear to me he has CP on his right side but consultant said it's too early to diagnose as these things change.

Our future feels so uncertain and I'm so upset and stressed with the not knowing.

I'd be really interested to hear others experience of the first couple of years with their children. Whether CP was obvious and when a diagnosis was given etc.

I worry that my sons symptoms seem quite mild so far but whether in a few months it could all get worse.

I'm really alone with all this as neither my partner or I have any experience of disability and the never ending appointments etc are just over whelming!

Thanks
Nicola

Rocky

Hi Nicola, it is a very worrying and distressing time trying to come to terms with the fact that your baby may have some difficulties and also waiting for a diagnosis and reconciling yourself with what that means.

Often children are not diagnosed with cerebral palsy until they are older - maybe 2-3 years as the doctors are observing the child through their development stages and ruling out other conditions which may have similar effects to cerebral palsy.  CP is a very complex condition and no two children are affected in the same way so the effects are very individual and treatments or therapies need to be tailored to that individual need.

It may be that your son has a form of hemiplegia which basically means that one side of the body is affected but he is probably too young to say to what extent he will be affected.  Does he have physiotherapy? If not, I would suggest asking your Doctor to refer him to a Physio and this will definitely help his muscle tone and grasp.

If you give the Scope Helpline a ring they can send you a copy of their Parent Guide which is aimed at parents of young disabled children and gives lots of tips including some on the different appointments you will attend.  Scope can also tell you if there is any local support in your area such as a Scope Response Worker or a Parent Befriending Group.  The Helpline number is 0808 800 3333 and the service is free and confidential.

It is still early days but you are doing well. Just take it one day at a time.