Hello

I am the mother of a five month old daughter who 'possibly' has cerebral palsy. She is a late developer and we are going through the motions of consultant appointments, physio appointments, JOG classes, etc, but I can't go back to work because of my commitments, and - selfish as it sounds, I just want to know what if anything is wrong with my child. She appears to be doing all the 'normal' things, but apparently is not fitting in with the standard - I am fed up of this emotional rollercoaster, any tips?? Thanks for your generous and kind support. xx :(

Hi Sage,

The 'wait and see' game is the cruelest game of all. Not knowing what is going to happen with your lives and feeling everything is out of your control is unbearable. I guess, you also need to tell your employers what's happening and you can't even do that until your child is diagnosed. I hope they are understanding of your situation and are not putting pressure on you to come up with an answer. Someone at the Scope Helpline might be able to advice you on how to deal with that. As far as the emotional side of your situation all I can say is take one day at the time. Try and get some sleep. It sounds very simplistic, but sleep is very very important. I remember having a 5 month old and being totally sleep deprived. The world looks much brighter after good sleep. Counselling is also very good and it helped me through a very bad time. I really hope the doctors find that there is nothing wrong with your baby and you can carry on with your life. However, if your child is diagnosed as having CP getting as much information about it and talking to other parents really helps. Don't forget also that CP is a condition with a wide spectrum and it's non-progressive. Some children are very mildly affected and others very severely. The important thing is to try and stay positive and not lose hope.

HI SAGE,
I CAN TOTALLY UNDERSTAND WHAT YOU ARE GOING THROUGH RIGHT NOW AS WE HAVE BEEN IN THE SAME BOAT SINCE JAN 30TH THIS YEAR. OUR LITTLE BOY, PATRICK, IS NOW ALMOST 21 MONTHS OLD AND HE WAS DIAGNOSED ON THIS DATE WITH ATHETOID CP. HE'S BEEN THROUGH HELL FOR HIS FIRST YEAR OF LIFE, AN MRI SCAN WHICH COULD'VE BEEN POTENTIALLY LIFE THREATENING AS THEY NEARLY OVERDOSED HIM WITH A SLEEPING DRUG, BLOOD TESTS AFTER BLOOD TESTS AND ENDLESS PHYSIO AND HOME VISITS AND SPEECH THERAPY.
I THINK THAT IT IS APPALLING THAT THEY HAVE TOLD YOU THAT YOUR CHILD IS NOT UP TO "THEIR STANDARD" EACH CHILD DEVELOPS AT THEIR OWN STAGE AND ABILITY AND IT IS MORE DIFFICULT TO PROGRESS WHEN YOU HAVE CP BECAUSE IT IS ALMOST LIKE THERE IS A MISSING CONNECTION.
WE'VE BEEN TOLD THAT OUR CHILD IS A MYSTERY AS THERE WAS NOTHING ON THE MRI SCAN, BUT HE HAS VERY LOW MUSCLE TONE AND IS ONLY JUST SITTING UP WITHIN THE LAST 5 MONTHS. HE CAN SAY A FEW WORDS, BUT IT IS WHAT THEY TERM AS BABY BABBLE AND CONSIDER HIM TO BE LIKENED TO A 10 MONTH OLD BABY. TO LOOK AT HIM, YOU WOULD SAY THAT THERE IS NOTHING WRONG AS HE IS NOT DISFIGURED OR ANYTHING AS YOU WOULD EXPECT, BUT WE ARE LIKE YOU - WHY HAS THIS HAPPENED? THERE IS NO GENETIC HISTORY ON EITHER SIDE OF OUR FAMILY AND NO EXPLANATIONS.

KEEP YOUR CHIN UP AND KEEP COMING ON TO THIS SITE. I HAVE FOUND IT VERY INFORMATIVE, ESPECIALLY NOW THAT I AM DUE TO HAVE OUR SECOND BABY ON THE 24TH SEPT BY C SECTION - I HAVE ALL THE WORRIES THAT YOU DO AND ALSO EVEN THOUGH WE'VE BEEN TOLD THAT THE PROBABILITY IS NOT VERY HIGH, ARE BOTH WONDERING WHETHER OUR NEW BABY WILL HAVE THIS TOO.
I WISH YOU ALL THE LUCK IN THE WORLD - DON'T LET ANYONE FOB YOU OFF AND MAKE SURE THAT EVERYTHING IS FULLY EXPLAINED TO YOU. THE MAJORITY OF OUR INFORMATION WAS FROM THIS SITE AND NOT FROM THE CONSULTANTS.
TAKE CARE AND IF YOU EVER NEED ANYONE, WE ARE ALL HERE FOR YOU
ANGIE X