My baby is 7 months old and has high tone CP. I went to the doctor last week and they said things are not looking good for him, his head is not growing, he has put on heaps of weight, but doesnt move only to feed. I am desperate to talk to other familys to see if any one else can give me ideas on what the furture holds for us or ideas on helping our beautiful baby.
NELLY

My daughter was diagnosed with CP at around 9 months of age. We were told by a couple of doctors that her head wasn't growing. We made them do measurements every time we went to the dr just to see if there was any change. Her head is growing just very slowly. She is very small for her age anyway so the head size isn't that big of a deal. She is 6 years old now and does very well, she gets physical and occupation therapy at her school once a week which really helps her. Does you baby get any kind of therapy?

Doctors know a lot about CP. They have made great progress in the past 20 years. What they don't know is you child. You are the person who is always there, taking care of them, seeing thier progress or lack of. You need to be the advocate for your child and stand up for what you believe. Fight for anwsers and do your research. My daughter was 9 weeks premature, she was diagnosed 7 months ago. I knew something wasn't right with her. I went from doctor to doctor until I found someone who would listen, someone who would do the test and examin her. I was right all along. I may not have know what was wrong, but I knew there was something wrong. She now gets therpy 3x a week, water therpy 2x a week and her high tone has improved greatly. Water therpy is a great method to start with. Once they are in the water and feel the freedom of movement they want more. She has gone from lying like a 2x4 to a lusy goosy!Try it.!
Good luck!:angel:
corina

HI CP BABY HIGH TONE

my little girl has High tone CP and it's diffcult as a first time mom to see your child like that , i have been taking my baby to fisio, and speech therapy, we have done 5 sessions of hypobaric treatements and i try everything that i can, i play music for her all the time classical really helps, i found that for 2 weeks i lacked playing music and their was little growth on the head as soon as i started playing music again their was growth. some doctors have no feelings i was tolled that she will never walk or talk she was only 1 month old, and they said their is nothing else i can do for her and to top it off the doctor said to me i must not cry it's not going to help. it's so diffucult not knowing what the future hold for us, my baby is also 7 months what does your baby do ? we can mabey exchange ideas and happings in our childrens lives
please keep in touch:angel:

what is water therapy

thanks for the reply ,yes i take her to Phsio and speech therapy and we have started Hypobaric oxygen which has really made a difference i just do not want to wast anymore time , if their is more i can do for her. did you find it diffcult coping with the whole cp dignoses, i am having a hard time i do not want to see family 'cause everything they say ticks me off./

Hi

My name is Carmen and I am 35 with spastic athetoid quadriplegia CP. My parents brought me up to be as independent as possible. They treated me as they would if I did not have CP. If you teach her know how to do the things she can do. That is a great start. If she does something wrong, do not be afraid to correct as you would any child. If people offer to help when she gets older, take them up on it. My parents did all my care almost by themselves. They did not want outside help; like someone coming in your home and taking care of your daughter. But my advice to you is to try it first. It took my parents a very long time to accept the help. If you have any more questions. Please let me know.

I am all grown up know. I worked two jobs and volunteered I was very busy. Plus I have had lot of operations in-between everything else. I finally got the break I was looking for in 2003 I moved out on my own. They did not want me to leave because they were afraid, I had help from Personal Care Attendants and my boyfriend at the time. It was the best thing for me because my father was sick.

To make a long story short, I was married July 3rd 2004. My husband is (AB). We met about ten years ago. We were friends first and the best part of our friendship was that he did not see the CP. He new all of my limitations but he did not care. When we decided to tell our parents well you know how parents are. His side of the family asked a bunch of questions, like why would you want all that responsibility. My parents were glad. They still want me home.

Great news On June 13th 2006 I had a baby girl. Her name is Danielle and she was a month early. All in all we are so blessed with her. It is not easy because now my husband Chris has to do everything for us. I stay home with our daughter with help from the PA’s. It was not easy to let other people take care of her but it has gotten easier.

It is not going to be easy. But God has a plan for you her. He did for me. I am so glad that there are people out there that realize CP is not a disease. Your daughter is going to have a great further and she can do anythng she wants to.

Carmen :)

My son is now three but he was about 10 - 11 months before they made the official diagnosis of spastic quadreplegic CP. He is and probably will always be high tone. he has relaxed quite a bit with physio therapy and is now learning how to use his tone functionally. For the first while it wasn't easy. At three and a half years old he is stronger than me when he puts his tone into play as I don't want to hurt him only hang on to him. different stretches help water therapy, basically you take your little one to a pool and have him float around in the water and play in the water with him. Your physio therapist can recommend some activities that you can do in the water. It's great my son loves it. Also massages help with the high tone it helps them to relax. Also look at how he reacts with the tone is it constant, is there a lot of discomfort could there be other things bothering your little one at the same time as the tone. My son didn't calm down and start to relax until we got his acid reflux under control. Look at every single possibility of anything that could be uncomfortable and start the process of elimination. I found it very helpful to work very closely with the doctors and all the other therapists involved to get things worked out. It takes time patience and you feel as though you are loosing your mind half the time but once you get things figured out and things calm down everything goes a lot smoother and is more enjoyable. As well make sure you get out at least one night a week it will help you keep your sanity. It's a good little break and muchly needed for any parent like us.

my daughters head was growing to much she was born at 31wks when she was 5mths we were told she had cerebral palsy and would have to wait and she how she was going to do in time
when she was 7mths she had a shunt put in her head to drain the fluid off
she was diagnosed with epilepsy at 15mths
she couldnt walk speak or sit unaiderd she had a lot of operations thought out her life but always laughted and giggled she was so happy dispite her situation its hard work bringing a child up who has these difficulites but so rewarding uncondisional love she passed away peacefully at age 10yrs in 1999 she was my world my life
id do it all again i only wish icould people dont relise the work you as a mum have to put in its 24/7 she had physio twice wkly and at home too i met all her dailey needs as any mum would