Question regarding 6 month old daughter - Cerebral Palsy Message Board

roxannemur · 08-21-2007, 03:54 PM

Hi there,
I have 6 month old b/g twins. My daughter is showing signs of cerebral palsy and I am not coping very well at all. She just lies under her play gym and once in awhile will reach up with one hand to play with her toys. Oddly, though she does switch which hand she uses but does not bring her hands together. If you hold a toy out to her it is like she doesn't know what to do with it. Her head and neck control is great and she does bear weight on her legs. I have noticed that when she is lying on her back her legs tend to be straight out and a bit stiff. I have an appointment with the neurologist in a few weeks.

Can you please tell me -- if she is showing signs this early am I in for a severe diagnosis? Has anyone had a child show signs at 6 months and turn out to be mild? It seems like everything I read says that the mild cases aren't diagnosed until 2 or 3 so am I right to assume she will have it badly?

Thanks so much for your advice.
Roxanne

nwmom · 08-21-2007, 07:26 PM

Hi Roxanne,
I don't know. Every case is different, they say. Our son's legs seemed to be a little straighter than his brother's early on and his toes seemed to point down more than normal, but he had poor head control. We massaged his legs every day for a year before he was formerly diagnosed. I believe--and this is just my opinion--that massage can help keep their tone from contracting as severely if they do indeed have a moderate diagnosis. I think there is research on this.
Our state has an in-home program where premature babies are visited by a PT, OT and ST for an evaluation and they will come in the home and work with babies who have higher than normal tone and other issues. Does your area have anything like this? They'll do this until they're three years old. Noah was a mild case but I think they knew at his 11-month eval that he may have CP. They had a PT come in once a week to work with him and when we went in for his 18-month follow-up with the NICU Doctors at their follow-up clinic, they diagnosed him with a mild form of CP, due mainly to what the PT told us to tell them ("low to moderate tone in legs and excessive drooling). Hope this helps. Best not to worry about it (or try not to!) until they give you their own opinions. Once you know, you can do your own research on it to help you feel like you have some control in what to do to help your daughter on the physical and emotional levels as time goes on. That seemed to help us to cope with our new reality of having a child with special needs.
Best of luck to you, and keep us posted!
nwmom

Malwm01 · 08-22-2007, 03:09 AM

Hi Roxanne,

I’m not a parent or doctor, just a person with CP myself.

Please don’t work yourself into a panic thinking the worst for your daughter. By all means I’m not saying don’t worry, just don’t let “the worst” consume your thoughts. Take a moment to breathe.

CP is caused my injury to the brain in the first 3 years of life, some before birth or during delivery. During these first years the brain is also able to learn to compensate very well and even if “part a” is damaged sometimes “part b” or “part c” can learn how to do the job of the damaged “part a.” It just takes time (and it wont always work that way.)

I wasn’t diagnosed with CP until I was 18 months old. I had a very tramatic premature birth and weighed in at 3 lbs 8 oz.

Even though I communicated quite well, I was very far behind in my motor development and didn’t even craw until I was 18 mos. I’m sure it was very easy to tell before then that I had a problem, my muscles were extremely tight and I was very stiff. Yet there were probably good reasons I wasn’t diagnosed until I was 18 mos. Since I’m not a doctor, I can only guess it was because they wanted to make sure I had CP (because there a lot of things that can look like CP) and that they wanted to be sure of how the CP affected me.

I have spastic quad CP and ataxia. It’s definately very noticable but people don’t always recognize what is wrong with me right away just with a look (but it doesn’t take long.) I have a funny gait, horrible balance, imperfect speach and fine motor issues. I can still walk well enough (not to say that I enjoy it or that I find it particularly easy--because I don’t) and I can live on my own with modifications and my mental capacity is not affected.

“Mild,” “Moderate” and “Severe” labels are subjective to begin with and noticing odd behavior early on or later doesn’t mean your daughter will be any more or less disabled than someone else.

CP is very unique to each person who has it. There is no strict criterea, that guarantees a child will have mild, moderate or severe CP. (There is something called a GMFCS for Cerebral Palsy but it is still not concrete. I would classify myself as a Level III with those guidelines.) Therapy, surgery, medication, modification, wheelchairs, walkers, crutches and braces can help people with CP live easier lives.

I hope I helped you some, and I wish you luck with the neurologist.

sobannon · 08-22-2007, 11:00 AM

Wow Mal,

You have given me alot of information that I didn't know. I am still pretty new to all of this. My 18 mo old son was diagnosed at 13 mo old. We knew that something was going on, we just were not sure exactly what. He started EI in May and in the last couple of months we have seen much improvement even with minimal visits until the outpatient therapy begins. He is not crawling and not at all enthusiastic at the thought of walking although his frustration is quite evident regarding his immobility. We pick up his DAFO's tomorrow which I am very excited about. Our PT is very confident that this will jump start his ability to walk (probably with a walker).

Again, thank you for the information.

Amy

Malwm01 · 08-22-2007, 09:43 PM

Hi Amy, I am glad I could help you out. Sometimes it's weird sitting here reading. When I type I never expect that my posts are going to mean much and it's an odd feeling knowing something I said meant something to someone else, lol. Everything I know comes from years of first hand experience of myself and others. And also, a lot of varied reading which I started doing in childhood.

It's fantastic that your son is in EI. In my own experience it was a great place. Some of my own most vivid childhood memories are from EI and preschool (I have this freakish ability to recall events from when I was very young. However, most memories are from my last two years at 3 and 4.)

I was 18 months to the day when I started EI and that was also the first time I ever crawled. (Which I don't remember,

) I started walking with a Kaye walker at 3, and progressed to forearm crutches at 6. Somewhere in the middle I ended up with AFOs, as well.

By my preteen years I was walking without the AFOs and crutches but now at 24, I am pretty meticulous at planning out how much I walk. And I'm noticing how smugged my walls are from holding them.

(thanks to Mr Clean for his fab Magic Erasers!) If I lived in a more accessible home (currently I live in a small basement APT.) I have no doubt I'd have either crutches or a walker.

As for your son, one thing I've learned with 15 years of weekly PT (often times with other kids) some kids love it and some hate it. Hopefully, your son's age is just preventing him from understanding the good of PT and that he'll come around