CP?

twinkjk

When did you first notice that your child had CP symptoms?  What were the first signs?  What types of assistance have you gotten and has there been an improvement?

JoJoGee

When did you first notice that your child had CP symptoms?

 I began suspecting CP when my DD was 9 months old (6 months old adjusted).

What were the first signs?

 Well, we knew DD was prone to CP because she was born so early.  We set up therapy through EI the moment we got home.  But, even with that, she still wasn't meeting her milestones.  At 9 months old (6 months adjusted), she still could not rollover or bear weight on her arms.  So, I began researching CP. After doing some research I noticed that DD's hands were often clenched when she felt unstable, or when she was not using them.  In addition, I noticed that DD preferred her left hand to her right.

What types of assistance have you gotten and has there been an improvement?

Lily was receiving therapy through EI the month that she came home from the hospital.  As she continued missing milestones we added private PT, OT and Speech.  When she got her CP diagnosis, we dropped private PT and OT and reduced EI and Speech to once a month.  Now, DD attends an integrated therapy program specifically designed for children with CP and similar disorders - think preschool plus therapy.  There are 5 children in DD's class and they meet 2 times a week, 2.5 hours each time.  While there, they play, have circle time, do art, sing songs, etc.  Since DD has been in that class, she has made huge improvements.  She can roll, she can sit, she can sign a few words (she has trach so she can't talk), and she is finally bearing weight on her arms... all of these improvements have occured in the past 6 months. And, when you take into account that she did not make any improvements for 9 months, that is huge. 

I feel it necessary to note that therapy cannot "cure" CP.  It is true that some children will be able to live a "normal" life - walking, talking, eating, etc..  But, it is also true that some will not.  My gut tells me my DD will never walk.  And, if that is the case, there is no amount of therapy that can help her.  However, therapy can help her make the best out of what she has. 

DixieNormous330

I ignored a lot for a long time. I noticed she wasn't doing things that any other babies were doing pretty early on. Like 4 months. She wasn't reaching for her feet or toys, she wasn't mouthing anything, she was (and is) still tightly fisted when relaxed. And she has full body hypotonia.

We started EI at 11 months and we get PT 4x a week, OT 3x a week, Speech/feeding 4x a week she's in a specialized hospital program so if she's not getting therapy she's in a special instruction program where they do art, snack, play time, circle time, songs etc. 

Like JoJoGee said, there is no cure. With DD she has made TONS of progress though still not mobile. There is only so much re-wiring that can be done around the extensive brain damage that DD has suffered. But we see progress every day, even in tiny things like adding in a hand motion during a song.

realisticdreams

twinkjk:

When did you first notice that your child had CP symptoms?  What were the first signs?  What types of assistance have you gotten and has there been an improvement?

When did you first notice that your child had CP symptoms?
I was kind of oblivious to it, we started PT at 2 months old for some other things and then closer to 6 months old the PT told us we should do an ortho consult for her inverted ankle & her scoliosis, when we saw ortho he asked why in the world we hadn't seen neuro yet to rule out CP.  When I then spoke with our PT, she told me she had suspected it all along but that she isn't technically allowed to straight out say it.  

What were the first signs?
P has right sided hemiparesis, which means it is basically only her right side that is affected.  Her right ankle was inverted, she never kicked her right leg really, or used her right arm at all, and even her right eye tracked less than her left.

What types of assistance have you gotten and has there been an improvement?
We started PT at 2 months of age and were very aggressive with it throughout the first year of her life.  She is able to walk, as her CP is on the mild side, but she did used to fall upwards of 50+ times per day.  Since having her spinal cord untethered her falling has made a huge improvement.  

She still has left side preference but the difference is so slight that only I can really notice it.

ETA: P also had very high tone, even in her mouth (eating was difficult, to say the least) and she also was delayed in almost all gross & fine motor milestones the first year of life.  She never was able to roll most ways & when she started crawling she just drug her right leg pretty much.

MaxandRuby

twinkjk:

When did you first notice that your child had CP symptoms? DS2 was diagnosed with CP at 9mos, 3wk, 3d old. Until that point I didn't really know that he had an issue, I just noticed a few things that weren't adding up (and I had an older son to compare to).  Looking back, I'd say I started noticing around 6mos which is when I noticed he seemed to ignore his left hand. However, he was treated through EI at 4mos for undiagnosed torticollis (the original pedi wouldn't diagnose him with it).  I will state that the PT with EI did tell me to ask the pedi at the 9mos appt about neurologic problems.  She had already suspected CP but wasn't able to tell me since she can't diagnose.

What were the first signs? The things I brought up during DS2's 9mos well baby visit were (and not all are CP signs) eye crossing, ankle clonus, hand dominance, he was still fisting his hands, his legs were stiff (I'd have to bend them to break up the tone during diaper changes), he wasn't sitting yet and it seemed that the thought of sitting hadn't occurred to him, he also wasn't crawling, he was a late roller, wasn't babbling much, and wasn't banging objects together.

What types of assistance have you gotten and has there been an improvement? DS2 was in EI from 4mos until 3yr when he aged out. He received PT, OT, speech, and feeding therapy in EI.  He also received those same therapies privately and continues to do so. He does aquatic therapy for speech and OT and also does hippotherapy. He will be getting PT and OT through the school system as soon as he begins the developmental preschool which should be soon.  He has received 2 Botox treatments and I saw improvement with the 2nd round of shots.  He also takes Tizanidine.

And yes there has been improvement. He will be 3.5yr old in April. I do not know if he will ever walk completely on his own but he can use a walker (not the best at it and you have to be in arm's length of him when he is using it) and he has a wheelchair that we use for long distance stuff (ex: zoo).  DS2 finds ways to be successful. He is a laid back little guy who loves to joke around.