Cerebral palsy? How did you now?

what kind of testing did they do?

I know when I was pregnant and had my anatomy scan they thought twin A (the twin I’m concerned about) had ventriculomegaly but when I went to the MFM office for a more thorough scan they said they didn’t see anything concerning and everything in her brain was measuring correctly. Now I’m wondering is that something related?? 😩

I’m in Raleigh NC so I’m not sure what we have that would be great in the area

So my son has very mild spastic diplegic cp. He wasn’t walking until around 14 months and when he did, his feet and knees were turned in. He also walked (and started running later) on his toes and had very tight heel cord muscles. I brought it up to pedi and specialist from 14m to 2yrs, but they just kept saying he’ll grow out of it. It made me lose sleep so I kept pushing. I finally got him in at CHOP. Eventually we got approved for a brain MRI at 2.5. No concrete signs of cp but it did show a cyst which was helpful to know about. Fast forward after a lot of PT, more MRIs, genetic testing he was finally diagnosed at age 4 by evaluation only. Unfortunately when it’s mild it won’t always show up on the brain scans but we know he has it based on his abnormal gait, intoeing, poor balance/coordination, tight heel cord. He’s 6 years old now and wears SMOs braces during the day, night splints and does PT to help loosen.

has it interfered with him doing anything with other kids? I want her to be able to learn with other kids and play with other kids and all the usual stuff and idk much about CP so I’m worried about if she has it, or whatever it is if not CP, what it means for her😞

Are things different, harder for him compared to his peers? Absolutely. They always will be, but he is so damn determined at everything he does. if he wants to do something, he finds a way! I would say 2-4.5 were the hardest ages for us with his mild case. He was falling/tripping like crazy. And I was a worry wart when he would play with others. All he wanted to do was run and do what other kids were doing. I had to learn to breathe and just let him. Things I thought he wouldn’t be able to do, he’s proven me wrong every time! Stuff doesn’t come as natural but with consistent practice he gets it! He couldn’t jump, stand on one foot etc at the same time as peers but eventually he got it. He’s 6 and can’t skip yet but he just works extra hard. The fatigue plays a huge factor too. He’s in kindergarten full day and it’s super tough. He’s exhausted. Getting into PT at an early age helps tremendously. 

that’s encouraging 🥹 I love to hear that he tries & conquers. I’m definitely going to get her back in PT while we search for some answers. Thank you so much for your insight!

yall for sure helped ease my mind no matter what the outcome is🩵 thank you!