Anyone have a child with mild spastic cerebral palsy? Anyone experience traumatic birth?

Nicole - posted on 12/09/2011 ( 5 moms have responded )

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Hi- I'm new to this group. Where do I start? Guess I'm needing a little encouragement as I'm feeling a little overwhelmed. My 22 month old is in the process of being diagnosed with mild spastic cerebral palsy. She has hypertonia, balance & coordination issues, mild ataxic gait, tight hamstrings& hip adductors, low tone in head and neck. L side of body has increased tone more than right. She has been in/out of therapy since 3 months of age, but we knew something was wrong since birth. Getting doctors to diagnose has been a struggle because she was injured at birth due to negligent care from my doctors and nurses. To top it off I have Post Traumatic Stress Disorder from the traumatic birth. Just feeling worn out from juggling all the non-stop therapy appointments, being a working Mom of 2 toddlers, and the PTSD makes it hard for me to stay in the present because I'm so angry this happended to my child! Can anyone offer some wise words of advice or encouragement? On the upside, my daughter is a bright, social, loving, silly, sweet girl and we would do anything for her!

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Andrea - posted on 11/28/2012

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I know you posted this almost a year ago but I felt the need to respond given my experiences growing up inflicted by mild cerebral palsy of the same characteristics as your daughter... I am 24 now but growing up I felt more isolated by disability because my parents refused to talk about it or explain to me what was different about me. I felt deeply betrayed because (at the late age of about 10) I was told by my twin brother what my disability was and that was the first I had ever heard about it. I was really hurt that my parents took the time to explain it to my brother and never to me. Anyway, my point is that the best advice I can give you is to talk about it with your child openly in an encouraging way. Any time the subject was brought up in my household it was quickly shut out, making me feel very isolated and confused about my disability (the opposite effect my well-intentioned parents had expected). -- Also keep in mind that half of all children with spastic cerebral palsy develop epilepsy later in life. That came as a surprise to my, again well-intentioned, but ill-informed parents. Good luck and be strong. ♥

Dorothea - posted on 01/24/2012

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I would like to commend you for having the courage to reach out for help. It's not easy to admit that you don't have everything under control. We all get overwhelmed at times. Do you have any family or friends you can call on to help you out? I would be a basket case if not for my friends, and antidepressants :) Ask your pediatrician for some suggestions on support groups.



I understand your anger. I really do. Your pissed because you had a wonderful little girl and someone else screwed her up. Use that anger to make the best life for your little girl you can. But go through the other stages of mourning too. (Make no doubt about it, it is a process, and you will hit every stage at one time or another.) My son is 7 and I'm still mourning the loss of the life he could of had. But I'm happy with the life he does have.



It's hard to stay on top off all the doctors appointments. I would recommend a "medical binder". (other wise known as a medical home.) Simply put it's one location where all the medical information for you daughter goes. There are some great websites out there on how to make one. The one for my son is broken down into 5 sections.



1. Therapy notes. This is a section that EACH therapist writes down what they worked on with Mike (my boy) that day.

2. A current IEP and progress notes. This way EVERYONE can see what's "suppose" to be going on. If I need something taken care of I can refer back to the IEP.

3. Emergency information. How to get a hold of my husband or my self. Doctors information. (Actually, I built a spreed sheet with all the doctors information on it and keep a copy on my computer and one in his binder.) A copy of insurance cards. I've also got a copy of his discharge report from the NICU in it.

4. Ideas on how to deal with his behaviors.

5. communication between doctors, teachers and myself.



As you can see it's morphed as he's gotten older, it goes EVERYWHERE with him. (Literally, if he's in the car it's in the car.) In the past, I've had a calendar in it with appointments written on it. As he's gotten older the number of appointments has gone down somewhat. Those first few years, I remember driving to a different type of doctor two or three times a week. It was hard. It does get easier, but never stops. Keep your head up.



Thea

Monique - posted on 01/13/2012

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Hi Nicole

I was told the same thing about my son. He was born prematurely I was told that he had hypertonia. At the age of two he was diagnosed with a mild form of spastic cerebral Palsey. He was receiving physical therapy since a year old. When he started to walk he walked on his toes and because of that he had tight hamstrings mainly on the right side. He also had weakness on the right side. He started wearing leg braces which help prevent him from walking on his toes. Some months ago I had him evaluated by a neurologist that recommended this spastic clinic . Then in November, he had Botox injections in his legs which help relax the muscle in the legs. He was just fitted for another leg brace. He also started physical therapy at the hospital in addition to physical therapy twice a week at school. He is walking, running and just last night rode a scooter by himself for the first time. He is 4 years old and doing good other than the cp. he does have a problem with falling . Be encouraged I understand what you are going through. If you need to talk further please feel free to contact me at nicole11208@ yahoo.com

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