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Each day
WILL BE SPECIAL IN ITS OWN WAY

the-cp-journey

David F.
David will discuss the emotional journey during and after diagnosis:
" Small victories make it all worthwhile...”

Each family who has a child with CP has a different story and a different journey.


We know that the time just before, during and after diagnosis can be a tough experience. It may take time to understand their condition and adapt your daily routine.


With each day, you will gain experience in taking care of your child, which help will reassure you that you are providing him/her with the best care. Professionals from various disciplines are there to support and help you. Reaching out to other caregivers can also be a big source of help and support.


This is a family journey and, having the help of other family members can build support and better understanding. When adjusting to cerebral palsy, it's important to try to maintain your regular routine.

 

“ He can see, he can hear, he can articulate, he is actually quite bright and that is a journey in itself”

Miriam, Yehoshua’s mum




CP is usually diagnosed before the age of three

We understand that hearing the diagnosis for the first time is a life-altering moment.

 

“I didn’t really believe it was happening, while it was happening"

Miriam, Yehoshua’s mum

 

Your mind may be flooded with questions about the future of your child and how to best provide proper care and support for them.

You and your family will go through an emotional period and will need help and encouragement all along the way. You are not alone, your healthcare team will be there to provide information, treatment, and support.

A CP diagnosis can lead you
on an emotional journey

Schematic representation based upon Nestlé Health Science’s patient and caregiver research for 2016 and 2017. This chart is provided for information and indicative purposed only.

 

It is important to be patient with yourself, as accepting the diagnosis requires time and you may already be feeling overwhelmed with the amount of information given to you by your doctor.

The more you know and understand, the more reassured you may feel that you are doing everything you can to take the best care of your child.


 

What can you do?

There are a few helpful recommendations that you can incorporate into your routine and throughout this journey.

What are the things that can help?

Keep a journal

Keep a journal that includes everything that you have learned about your child’s cerebral palsy and any questions you may have. This journal can be a valuable source of information during medical visits.

Work with your doctor

Work with your doctor to develop a personalized, complete care plan for your child.

Seek support

Check for local support groups and reach out for help and guidance.

Plan activities

Plan fun activities with your child and family. Your child may enjoy being outside, surrounded by family and friends.

Take your time

Take baby steps. You don’t need to plan everything now. If you are feeling overwhelmed, don’t hesitate to ask for help.

Assist & Support

Never let CP define your child and try to continually encourage your child.

Honour Accomplishments

Celebrate the little things. No matter how small they are, every achievement counts.

 

Who can help?

Following diagnosis, and all throughout your child’s unique cerebral palsy (CP) journey, a number of healthcare professionals can take part in helping your child.

If you do not have access to a specialized clinic for children with CP, ask your doctor for a referral.

"You know the ins and outs.
You can help the team provide the best support for your child"

Coleen, Tierney’s mum

 

Your healthcare team could include:1

Your child’s pediatrician, or general practitioner (GP)

Your child’s pediatrician, or GP, will be a core member of the team and will guide and support you throughout the journey.

A physiotherapist

A physiotherapist will evaluate muscle tone and can help your child gain strength for more independence.

An occupational therapist

An occupational therapist will work closely with you to help your child perform daily tasks, such as getting dressed or going from one place to another inside the house.

A pediatric nurse practitioner, or a registered nurse

A pediatric nurse practitioner, or a registered nurse, can be your main point of contact and will be a valuable resource for you in the day to day questions.

Feeding your child may require the help of several healthcare professionals:1

A pediatric gastroenterologist

A pediatric gastroenterologist will help you manage your child’s nutritional challenges and needs.

A dietitian

A dietitian will be the expert you refer to for all of your child’s nutritional information and will help you plan the best nutritional plan for your child.

A speech and language pathologist

A speech and language pathologist will address your child’s ability to speak and communicate and can also assist with swallowing issues.

Communicate openly with your healthcare professionals so that they can help you find the best solutions.

 

References:

  1. NHS, Understanding enteral feeding. Available at: https://www.nestlehealthscience.us/mytubefeedingkid/understanding-enteral-feeding