Cerebral palsy? How did you now?

Anyone with a baby with cerebral palsy? I’m concerned one of my twins may have it. Idk her milestones are just so late or barely there. She’s 14 months, only grunts or whines to communicate, when her twin sister is already making out a few words clearly. She isn’t trying to walk, she does stand up against a couch and will side step but when we hold her hands to try to walk her she just gets really stiff and doesn’t want to move. She did have to get PT to learn to sit up on her own and crawl properly because she was behind with that milestone as well but now she’s doing it perfectly. She does eat/use her hands well. I’m not sure why CP is my first thought but I have no idea what it looks like in babies her age. What were your first signs in your babies with it? She has her 15m check up next month but idk something in my mind just has me losing sleep over thinking about it.

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My son has CP and is a twins he wasn’t anywhere near meeting milestones when his sister did. When they got to nearly age 1 and he wasn’t even sitting unassisted I knew and demanded testing- and I was right. FOLLOW YOUR GUT, MAMA!! Advocate hard!

@Hannah what kind of testing did they do?

They did an MRI, people with Cerebral Oalsy has less grey matter in a certain area of their brain.

Sorry for the typos, I’m too fast lol

But step one is getting with a pediatric rehabilitation doctor/clinic. What area are you near? I’m luckily in the same city as Cincy Children’s and they’re the top kids hospital network in the U.S.

@Hannah 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?? 😩

@Hannah 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.

@Kara 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.

I fully agree that things are harder for my son than my daughter, but he adapts and keeps up in his own way. He’s drooly, clumsy, and all the classic signs of CP but he manages. Fact: just about 1 in 4 CP patients are wheelchair users, and even then sometimes it in ambulatory.

@Kara 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!

But yes fatigue is huge (he also has a heart and lung condition though). He has a feeding tube because that’s harder for him as well. But he is the happiest and most loving kid I’ve ever met. Therapies like OT/PT/Sperch will be periodic but lifelong.

Also for reference my son turns two this July. All of this is new to us.

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

Also looked up some info for you, UNC has a cerebral palsy/rehab med clinic. Definitely call them, get a referral. Do what you need to do for your baby. Trust your gut, us mommies are rarely wrong. ❤️❤️

I’d also like to add I have a sorority sister and another friend with CP and they’re both in wheelchairs but live full lives! College degrees, significant others, living independently, and one of them even does adaptive driving. I will also say official diagnosis is important here because it opens up all the resources your baby will need for success as they age. Best of luck ❤️🍀

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