Symptoms at diagnosis of CP

WorriedAunt

hi Guys,

hoping you you can share your experiences. My 22 month old niece recently had X-rays on hips, knees & ankles. Hips were not good & radiographer had suggested referral for both hip dysplasia & CP consultants, as she wasn’t sure which it is from X-rays.

A little bit of back-ground-she had normal birth at full term, weighed  8ilbs. She never weight neared on her legs, as a small baby, the way the average 4-6 month old might stand a little on your knee. Her legs were always a bit dangled/floppy. Everything that we’ve noticed is normal. She was referred to physio at 9 months when still not rolling or crawling. She could/can sit up. Physio advised nothing wrong & a regime of encouraging her to stand commenced. She would stand, but you could see the strain in her face, she would try to take the weight with her arms instead & would be very uncomfortable & cry within 20 seconds. She since bum shuffles, but rather than leaning to right or left, she keeps her knees together in front & goes straight ahead, her legs bend up & down but she uses her arms to propel herself forward. The doctors since the X-rays last week have also said she has low muscle tone in her legs & less than average in her arms.

My cousin had hip dysplasia at birth on both hips & all our babies were monitored for this at birth & 6 weeks. No abnormality was picked up regarding her hips st that stage. My niece seems otherwise bubbly, interactive, chatty, engaged & has no other apparent problems.

can anyone share their experiences of CP diagnosis. Did it come as such a bolt from the blue or were there other symptoms besides not walking? My sister is beside herself & has gone into full catastrophic thinking mode ?

Due to the delay, what are the outcomes like for hip surgery? 

My own little 7 year old was diagnosed with Crohn’s disease last year & the very worst part was the sickness prior to diagnosis.  When the consultant ultimately diagnosed her, I was very upset but also relieved to have a straight path forward. She’s doing very well now on maintenance meds.

Thanks in advance for your help regarding my gorgeous little niece.

Richard_Scope

Hi @WorriedAunt

Thanks for your post and it's good to talk to you.

Some of the things that you describe could potentially be indicators of a child having a condition such as cerebral palsy (cp) but not necessarily so. I think the important point here is that you have concerns and you sound as if you need those concerns addressing by an appropriate person. It would not be appropriate for me to speculate if your daughter has cp but I would suggest that you express them to your niece’s GP. 

By definition cerebral palsy is a disorder of posture and/or movement that results from the immature brain either being damaged or failing to form correctly. It is a diverse condition that affects each individual in a way that is specific to them. It can display itself in a way that is similar to other developmental conditions. Diagnosis is normally made by a paediatric doctor after a period of observation and tests to rule out the possibility of other conditions. A brain scan can often assist with identifying areas of brain damage but not in every case. There is no stand-alone test for cerebral palsy, diagnosis is more of a process that looks at evidence from different sources (such as medical history, general tests, scans and observation). The average age of diagnosis is 18 months but sometimes much later, especially if the person is only very mildly affected or has other health issues that are complicating matters. 

 Has your niece already had an appointment with a Paediatrician?

We have some further information on Diagnosis that you and your sister might find useful. We are always here to talk and help where we can.

Kate_Scope

@WorriedAunt hello and welcome to the forum, I think that it's wonderful that you are trying to support your sister through this time- it is a time of great emotional turmoil not only for the parents but also for the wider family. 

We are a new service going live on Monday 25th February and we are called Navigate. We are offering parents one to one support online or on the telephone for six sessions, this will be a place where your sister can talk openly about her feelings and ask anything that she feels is important to her and her family. All the navigate advisors have a background in disability and some have disabled children of their own, it is a place where she will not be judged. We can give practical support and advice as well as emotional support. This service is about helping people move forward with the right advice and support at this difficult time for their family. 

I will post links to referral forms on Monday and the telephone numbers for your sister to get in touch if she feels she needs some support. 

Kate 

Kate_Scope

 

For more information about Navigate, and to apply online, please click here”