DD has Cerebral Palsy - Mothering Forums

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#1 of 11 Old 01-14-2009, 01:20 AM - Thread Starter
 
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My DD was born at 38 weeks 3 days at only 4 pounds 14 ounces, in severe distress as I had low fluid, my placenta was dying, and she had IUGR, hypoxia, and aspirated meconium at birth. Her Apgars were 3,5, and 7. She had a seizure the day after she was born and had a bleed on the left side of her brain. We were told that she would be moderately brain damaged. The next day they told us that the bleed was mainly in the fluid sacs.

She is now almost 21 months old and on Friday she was formally diagnosed with Diplegic Cerebral Palsy. My aunt brought it up in October, but I didn't really think much of it. The week before Christmas I asked her PT what she thought, and she said that she did think she had CP. So off to the neurologist we went and he agreed.

It doesn't really change anything because the treatment is the therapy she has already been getting for more than a year through Birth-to-Three. It's also just good to know what we are dealing with.

If anyone has resources to share about support forums or other info, that would be great.
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#2 of 11 Old 01-14-2009, 05:15 PM
 
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We're not dealing with CP but for me hearing things "officially" is always a little bit hard.

I was a high school teacher. I had some really great (in all ways) kids with CP. My fastest keyboarder had CP affecting a hand (and leg). He was a well liked kid and quite successful academically. Another girl had more physical challenges but was happy (is happy...I recently ran into her and she's pregnant with her first). My point is that her diagnosis doesn't determine her future or her happiness.

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#3 of 11 Old 01-14-2009, 05:31 PM
 
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OMG - Brendon was born at 37 weeks 2 days at 4 lbs 14 oz with IUGR! There was a 5% placental abruption that no one knew about until I was in labor.
Now they say he has ASD (he's 28 months old) but I'm still kind of wondering about CP.
HUGS, mama! Now you know. It might help.
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#4 of 11 Old 01-14-2009, 07:36 PM - Thread Starter
 
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Thank you, sbgrace, for the hope.

ShadowLark, I am sorry that you went through a similar experience. I'm sorry, can you tell me what ASD is? (I'm assuming autism?)
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#5 of 11 Old 01-15-2009, 01:16 AM
 
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Yeah, it's Autism Spectrum Disorder. He's not talking yet, he loves rocking, rather hang out alone than with others, etc., etc.
But he's a sweetie!
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#6 of 11 Old 01-16-2009, 12:21 AM - Thread Starter
 
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I bet he is! :
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#7 of 11 Old 01-18-2009, 01:42 PM
 
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My son has cerebral palsy too. It's hard to hear the formal diagnosis. I remember when I first heard my son's therapist referring to him as someone with cerebral palsy I felt completely floored. Time has passed since then and now I like to think of it as just a silly blanket term for brain injury. When people ask about my son I usually say he has brain injuries. People understand that much better than cerebral palsy.
I don't have any support forums that I know about. It's hard for me to find like-minded folks as we are not very mainstream. I can tell you we did Hyperbaric Oxygen Therapy (40 "dives") when my son was 2 and it made a really good difference for him. We also get him regular cranial sacral therapy, chiropractic care and massages in addition to the OT/PT/ST!

Opinionated Mama to dd 2/23/03, ds 3/20/05 hbac, dd 1/23/08 2hbac, and baby #4 due in June 2010!
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#8 of 11 Old 01-18-2009, 03:31 PM
 
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I have spastic hemiplegic CP (left side). I can't speak about the kids' cases posted about in this thread but I just wanted to tell you DON'T GIVE UP HOPE. My mom was pitted, I went into distress, and my brain was damaged all so the OBGYN could rush to her kid's kindergarten play. I was diagnosed at age 2 and my parents were told I would never run, never ride a bike, and I would be in special classes. I had surgery and tons of physical therapy as a kid. I ended up declining surgery in 6th grade that would have put me in a wheelchair for awhile. Today I'm 25, I can run (but I hate it ), I can ride a bike, and I graduated from high school with honors and am currently earning my second college degree. My CP does hold me back sometimes and it can get annoying but in the grand scheme of things I am so lucky. Now I'm planning my summer of 2010 wedding.

Fight for your kids and encourage them to do the same. Only time will tell the extent of their injuries. They may not ever be 100% able-bodied but I really feel that you will see some type of improvement from doing whatever various therapies are available to you.
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#9 of 11 Old 01-18-2009, 11:52 PM - Thread Starter
 
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LynnE73 and fishface, Thank you so much for your posts. I cried at both of them with optimism. Fishface, I loved reading about your accomplishments and that you are planning your wedding!

LynnE73, I'm going to PM you.
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#10 of 11 Old 01-19-2009, 12:06 PM
 
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My son has CP. I was glad when the doctors started referring to it as CP rather than ‘brain damage’ as they had for three years. I refer to it as 'mild CP' because at this point in time it is not obvious. He went through several years of therapies (PT, OT, DT and ST) but is doing great. I've learned the effects of CP can vary greatly. We were told he may never walk, but he walks fine and can even ride his bike three miles! He is very intelligent. I know we are lucky and things could have turned out much differently. In his case, he was a preemie with a very violent delivery resulting in a grade II brain bleed. I believe the early therapies, especially PT made a huge difference in my son's development. Although he is no longer in therapy, we still work with him and stretch him since he has spasticity issues.

CP sounds so frightening. But over the years other medical issues scare me much more. Since CP is a static condition, I am not concerned about degeneration or progression of issues. We treat effects as they are noticed. For a long time I was angry - I felt I would always be watching him looking for effects of CP. I felt I was cheated because he was not who he could have been…now I cannot imagine him any other way. (I also feel his CP could have been avoided so I was bitter.) The children and adults I've met with CP, with varying degrees of severity, are bright, able people. It is amazing how the brain works and re-works as needed. Good luck with your daughter’s therapy.
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#11 of 11 Old 01-19-2009, 12:53 PM
 
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My oldest was a 30w preemie after I had an emergency cs due to severe preeclampsia. He received a dx of CP when he ws 10m old, it had been suspected for a few months prior but we waited on the MRI to confirm. It is such a shock to hear that label applied to your child. I still remember, and it was almost 10 years ago. We had a blur of therapies for several years mainly speech as he was/is atypically affected. He had a lot more problems with oral motor issues than fine or gross motor skills. With his motor skills he was able to compensate on his own much of the time.

All that to say at almost 11yo, he is a smart, funny well-liked kid who does anything he wants to. He makes all A's in school and is probably "gifted" although I haven't had him formally tested, he is in dance/theater and just finished his first show weekend for a musical that he auditioned for and got a speaking part! He was invited to and attends a boys skills class that he is not actually old enough to be in. He played little league baseball for 2 years, and is active in Scouts. Unless you knew specifically what to look for and were looking hard, you would not notice a thing different than any other kid at this point.

The best resource I can point you to is kid-power. After all these years, it is still where I go to if I need to look something up and the Special Needs Links page was member created and is incredible. There is plenty of mainstream info as well as lots of alternate treatment. There is also an associated email list that I have been a member of for close to 9, maybe 10?, years. Some of the oldies are still around, there are a lot of new faces, but it is an great source of parental information and experience. It is fairly busy, though.

Take a while to breathe and let it sink in. Like you mentioned you are already doing what you needed to do with EI, etc. Having a dx is daunting, but what it does is open doors to the services and therapies your child may need.
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