Parents of children with cerebral palsy?

Question

when did you notice something was different with your child? How did you handle the reality of your child having it? Where doctors seeming to avoid your questions when you asked? I am worried one of my twin daughters has it. She preferred her head to the left side. She would look that way lay that way. She would cry if I tried to move her head to the right side. When I hold her she gets really stiff. May sound weird but it looks like she has a baby four pack belly. When she tenses you can see the muscle definition. She layed on the left side of her head so much her skull is malformed. I hope she doesnt but I want to be prepared if she does so I can try to get a handle on things. How did you find out the severity because some people have it & live seemingly normal lives while others don't. Please help me understand.

Answer 1

My daughter is going on two in august she was diagnosed at 3 months when she started getting siezures. She also would get really tight in her legs and arms, she is on some medicine for her hypertonia called valium. She would get upset when i touched her head so the doctor ended up doing some mri's.Shes mostly wants to have her head facing left. Im not sure of the severity of my daughter all i know is that she is very delayed. She is receiving therapy from first steps.It was very hard for me to accept the truth especially for me being o young im only 20, but i ended up living with it day by day. I love my baby no matter what. Just keep your head up it can be very stressful.I wish you luck. Try to get the medical health she needs the faster the better. God bless you and your daughter!

Answer 2

Sounds like your Mother Instinct is correct that something is amiss.  The tighness on one side of the neck can be torticollis or it can be from a strong ATNR (asymmetrical tonic neck reflex) that is keeping her pulled to the one side.  It is important to get treatment for torticollis and deal with the skull shaping early on.  Children may have a range of difficulties from cerebral palsy.  Some children may grow up to walk with a slight limp or have speech difficulties.  Other children that have more challenges may use a walker or wheelchair.  You will learn about the severity of her challenges through her development and response to treatment.  Early diagnosis is your friend as services through Early Intervention are inexpensive or free and covers your child from birth to three years old.  The earlier your child begins to have professional help and your home support the more progress she can make.  You can also be on guard for potential complications.  A dedicated parent is important for the home therapy plan and to make the most of the serivces that she would be eligible for.  I urge you to bring these concerns to your peditrician immediately and if he/she does not listen; then request a formal evaluation through early intervention in your county.

Answer 3

The Specialists at Children's Hospital need to see her to evaluate anything ASAP. They can and will assist you and guide you.

Stay strong