Adults living with CP Community Group
We are a support group for Adults living with Cerebral Palsy (CP) trying to find answer to help us on our daily journey.
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Hello everyone,
I am a bit new to the group and have a few questions to ask, if you guys don't mind.
1)Do any of you have Static Encephalopathy?
2)Is Static Encephalopathy the same thing as Cerebral Palsy? OR
Is it a whole different diagnosis?
3)Does Static Encephalopathy cause Cerebral Palsy? OR
Does Cerebral Palsy cause Static Encephalopathy?
4)Does CP dissipate with maturation(or go away)?
5)Have any of you heard or have used baclofen? (If so does it work)
I ask these questions because, I am a bit confused with my diagnosis. When I was a baby my parents were told I had Spastic Diplegic Cerebral Palsy(in my legs and feet) because I would try to walk, but I walked kind of weirdly(on my toes with lack of coordination). In addition to this I was delayed in my milestones. The neurologist I had at the time diagnosed me with CP because, I was born premature with many complications. Unfortunatly, in addition to this diagnosis my parents were also told I would never be like my peers. I would not be able to walk normally nor talk. I would basically become a vegetable. Because, of this diagnosis my parents did not give up instead they had seeked alternative therapy recommended by my pediatrician. These therapies were Early Intervention, Rolphing, Physical Therapy, Occupational Therapy, Speech Therapy and Special Education. Though when I seen him at the age of 3 years old I could walk and speak. So pretty much the guy was wrong. That is when he told my parents that my CP dissipated with maturation because I progressed in my milestones. When I grew older I started seeing many neurologists and specialists because I started having a lot of legs and foot issues. Though all of the specialists said it had nothing to do with CP and that all my tests came back normal. This also includes brain scans normal too. None of them could figure out why my legs and feet cramped, why I had severe issues with lack of coordination and had learning difficulties. It was not until a few months ago I had recently seen a adult neurologist who wanted to do an MRI because, I had not had one in a long time. In addition to this he was concerned in my walking gait, foot/leg cramping and learning difficulties. When I went to see him on Friday for the results he showed my parents and I the MRI. Of course we were to expect him to say everything was normal. But, my scan actually wasen't normal. He said my scan was not good but not bad either. He basically told us that I was not going to progress or regress. That I don't have MS(which I am thankful, since it runs on both sides of the family). Though It is Static meaning it's just there. What you have is Static Encephalopathy. But, that doesn't mean your life has to end. You can still go for the job you want, you can drive a car, buy a house...etc. Which was reassuring I guess. He also said the muscle spasms are from hypertonia which is caused by the few lesions in your brain and damage to your white matter. He did suggest baclofen could help your feet and leg cramps but, I told him I would think about it first. In addition to this I have a new EEG on Thursday and a neuropsch exam. The reason why I held off on the Balcofen was because, I am still trying to wrap my head around it all. Thank you all for your patience ~ Jessie02
I am a bit new to the group and have a few questions to ask, if you guys don't mind.
1)Do any of you have Static Encephalopathy?
2)Is Static Encephalopathy the same thing as Cerebral Palsy? OR
Is it a whole different diagnosis?
3)Does Static Encephalopathy cause Cerebral Palsy? OR
Does Cerebral Palsy cause Static Encephalopathy?
4)Does CP dissipate with maturation(or go away)?
5)Have any of you heard or have used baclofen? (If so does it work)
I ask these questions because, I am a bit confused with my diagnosis. When I was a baby my parents were told I had Spastic Diplegic Cerebral Palsy(in my legs and feet) because I would try to walk, but I walked kind of weirdly(on my toes with lack of coordination). In addition to this I was delayed in my milestones. The neurologist I had at the time diagnosed me with CP because, I was born premature with many complications. Unfortunatly, in addition to this diagnosis my parents were also told I would never be like my peers. I would not be able to walk normally nor talk. I would basically become a vegetable. Because, of this diagnosis my parents did not give up instead they had seeked alternative therapy recommended by my pediatrician. These therapies were Early Intervention, Rolphing, Physical Therapy, Occupational Therapy, Speech Therapy and Special Education. Though when I seen him at the age of 3 years old I could walk and speak. So pretty much the guy was wrong. That is when he told my parents that my CP dissipated with maturation because I progressed in my milestones. When I grew older I started seeing many neurologists and specialists because I started having a lot of legs and foot issues. Though all of the specialists said it had nothing to do with CP and that all my tests came back normal. This also includes brain scans normal too. None of them could figure out why my legs and feet cramped, why I had severe issues with lack of coordination and had learning difficulties. It was not until a few months ago I had recently seen a adult neurologist who wanted to do an MRI because, I had not had one in a long time. In addition to this he was concerned in my walking gait, foot/leg cramping and learning difficulties. When I went to see him on Friday for the results he showed my parents and I the MRI. Of course we were to expect him to say everything was normal. But, my scan actually wasen't normal. He said my scan was not good but not bad either. He basically told us that I was not going to progress or regress. That I don't have MS(which I am thankful, since it runs on both sides of the family). Though It is Static meaning it's just there. What you have is Static Encephalopathy. But, that doesn't mean your life has to end. You can still go for the job you want, you can drive a car, buy a house...etc. Which was reassuring I guess. He also said the muscle spasms are from hypertonia which is caused by the few lesions in your brain and damage to your white matter. He did suggest baclofen could help your feet and leg cramps but, I told him I would think about it first. In addition to this I have a new EEG on Thursday and a neuropsch exam. The reason why I held off on the Balcofen was because, I am still trying to wrap my head around it all. Thank you all for your patience ~ Jessie02
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