what to.expect from a 5 year old with grade 1 CP

Hi. I am curious as to what to expect from a 5 year old child going into kindergarten this year. She was recently diagnosed a, month ago. She was born at 7 months gestation with complications that were treated for in the icu. She did not receive any extensive follow up by PT or OT during her infancy. She was noted to have an inward gait with tip toes, but did not.receive intervention but was advised to keep an eye on it. With her new diagnosis the MD gave her orthotic leg braces to straighten them out and a referral for PT. I feel that this was overlooked and PT/OT should have been following her the day she left the hospital since she was a high risk patient..Please help

Report post

4 replies. Join the discussion

If your daughter was born at 28 weeks, how long was she in the NICU? What was her treatment while in the NICU? Usually if a child is born premature they are followed by a NICU follow up cinic, so I am interested to hear more about your experience. Also, if your child is going into kindergarten, you should contact the school right away to let them know about your child's diagnosis.

Report post

I'm not surprised your daughter wasn't followed after discharge. My daughter was discharged to a general pediatrician and her NICU didn't offer a follow-up clinic either. I had to press our pediatrician to refer us to a children's hospital High Risk Newborn clinic. She was offended bit finally gave in. Thank goodness- she completely missed all the signs for CP and severe feeding issues associated with PVL (although I didn't!). My little girl with CP issuing great strides at age 4. She wasn't receptive to treatment until turning 4 and has made her biggest leaps in ability in the past six months. Therapy and orthotics will help. Mild CP is often missed so try not to beat yourself up. Many children with minor involvement live a typical & normal life. Youwouls never guess my little one has CP now. Good luck and keep us posted.

Report post

Hi, my son (now 15) was also often misdiagnosed until almost 3 years old. He walked with an inward gaite, but otherwise seemed to progress adequately. He has mild CP, affecting the left foot and hand/arm. My strongest suggestion for you would be to continue OT/PT, and most importantly for school, begin the process of having your daughter placed on an IEP (Individualized Education Plan). I was very reluctant intially to put my son on an IEP, but I am so very glad we did! He will be entering 10th grade this year, and I cannot stress the difference an IEP has made in his education. Unfortunately, there have been many teachers/aides who have tried to push him through the school year. But those teachers and aides who are truly there for the kids are priceless.

Outside of education and therapy, we have tried to keep our son involved socially. Unfortunately, he is at the age where alot of his peers very often shun him. This is a huge struggle for him (and us), but he is a great kid and handles most situations with a great attitude.

Best of luck with the school year! Kindergarten is such a great year of self-discovery!

Report post

My twins have "level 1" CP their specialist has explained to us that most of their teachers will not believe us when we tell them that our children have CP.
Do not beat your self over the head. The good thing is you move forward. You don't really know if PT/OT would have made any difference. Your child is strong and obviously a fighter & this will fare her well in life :)
I encourage you to take advantage of services through school. My twins are 2 1/2 and I have them in the early intervention. They are thriving and have come a long way.
I hope this helps.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Discussion topics

Community leaders