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r/CerebralPalsy•
ABCJMC

Cerebral Palsy - Age at Diagnosis

At what age were you diagnosed with cerebral palsy? What were the signs that lead to diagnosis?

Looking for personal stories and signs to watch for in my daughter.

My daughter is almost a year old and I have been seeing a pedestrian who specializes in muscle-skeletal disorders since she was around six months. She was referred to him by our family doctor after we noted a difference in muscle tone between her left and right side.

She has recently started crawling but before this would army crawl by pushing off with her left arm/leg, leaving her right leg limp/unengaged. When we try to get her to stand she currently won’t bear weight on either leg (raises her feet or becomes floppy). She will pull up on furniture to her knees but won’t pull to standing.

Her hand eye coordination is good and language development is as expected for her age. There was no birth trama.

The specialist mentioned cerebral palsy and reading online I see that she has some of the signs, but those signs could be related to many other things.

We are going back to see the specialist in another month and for now I am making videos to show any concerning things I notice. We also have a referral for an longer assessment with a physiotherapist to test her muscle tone.

Posted Apr 5, 2019, 2:34 PM UTC

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kewpieoriole•

Hi! Not me, but my older brother. He was two years older than me, very early premie with trauma (believe due to doctor taking him out too early?). My parents thought he wasn’t developing at a normal rate but were unsure being new parents. After I was born and started crawling/walking/babbling, etc that’s when they really realized something was up. He then started mimicking what I was doing but still at a slower pace than I was, speech was delayed, didn’t have lots of dexterity with his hands (could grab and hold things but really couldn’t hold a pencil and write). I believe his diagnosis was around 3, doctors said he would never walk or talk but he did both of these things. I hope this is helpful to you and hope you get all the answers for your daughter soon! :)

5
ABCJMCOP•

Thank you. She my second, so I am always comparing her to my so who was very mobile and a relatively early walker. Like your parents I am not always sure if she is developing at a normal rate in terms of mobility. It is so difficult to diagnose babies.

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kewpieoriole•

It is, I guess that’s why I guess a lot of diagnosis come around toddler age where it’s much more apparent. It’s probably also hard not to compare them since your first was early on developments. I’m not sure what state you’re in but I’m from MD so my brother spent most of his child-early adulthood going to Kennedy Kreiger to specialists and therapists there. So if you’re close, maybe that’s a place you can check out to take your daughter. Best wishes to you and your daughter that you’re able to find answers soon.

Edit: word

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ABCJMCOP•

We are in Canada. I am hoping she gets a physiotherapist soon. It’s so hard to wait.

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kewpieoriole•

Oh yeah that’s a little far to travel for doctors (though I know people travel from all over to Hopkins/Kennedy). I hope you’re able to soon as well, it’s exhausting waiting for answers. I watched my parents go through it for many many years, so I wish that you’re able to find the answers/care very soon. :)

1
deathtickles•

Not sure where you are in Canada but we didn’t bother to wait to see the sub-par PT from the local programs and got our daughter into private PT and ABM intensive therapy. ABM honestly seemed hokey at first but I can’t argue with the progression we see after each intensive.

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kittenmommy•

I was formally diagnosed at age nine when I suddenly couldn't put my right foot down flat on the ground due to my Achilles tendon being too tight. I had surgery to lengthen it when I was ten.

I always had problems with my legs, though. I was pigeon-toed as a kid and had to wear a brace at night while I slept that kept my legs in a certain position... I think? IDK, I was too young to remember it. I could ask my dad, he might know. The one who'd know most about it is my mother, but she's been dead for over ten years now, so...

I hope the doctors figure out what's going on with your daughter! Let us know what happens!

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ABCJMCOP•

It may be awhile before I have any more information to share. Thank you.

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kittenmommy•

Of course! 💗

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Phrase_Turner•

I was diagnosed with right hemiplegic CP at 16 months. Apparently I never crawled normally but scooted like a snail and was not walking at 16 months but was cruising. I was walking by age 2.

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deadarrow32•

So as far as people with CP go I’m actually incredibly fortunate as mine is only a minor case. In fact you would not know I had it unless I told you. For me we didn’t find out until I was about 17 or 17. I’m a track athlete (not a very good one) and is always find myself in abnormal amounts of pain after running. It just felt like my legs were way tighter than they were supposed to be. So we went to a doctor and got some test done and it all started to make sense. It doesn’t effect me greatly in my day to day life. I sit down more than most at work and I can’t write a lot without my wrist just killing me, but I’ve been fortunate enough to live a fairly normal life with CP.

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squishyPup•

My daughter, now 17, was diagnosed ataxic CP somewhere between 6 and 9 months. She had a traumatic birth. Her mom and I first started to notice milestone delays. We kept saying she was a floppy baby. NICU doctors confirmed it on a follow up visit. Official diagnosis from a pediatric neurologist came some time later.

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