Hi everyone, I just want to thank you all in advance for taking the time to read about my son, and appreciate any answers/comments you may have.
My son is 8 months old, but his adjusted age (he was premature) is 6 1/2 months.
When my son was born he had a grade IV interventricular hemmorage. This caused damage to the brain tissue in the right side of his brain.
He was initially being seen regularly by a neurosurgeon who was following him to make sure his ventricles remained stable (and there was no fluid build-up) and that he would required surgery or be shunted. Praise GOD! He did not need surgery and his neurosurgeon told me two weeks ago that he doesn't need to see my son anymore!
My son is developing pretty normally as far as milestones. He is sitting up unassisted, bearing weight on both legs normally, rolling both ways, and getting up on all fours and rocking (getting ready to crawl!). He does however display "mild asymetry" of the hands. He uses his right hand much more often and has better coordination with it. Most of the time, if he is sitting inactive, his left arm will be bent. I straighten it and he will keep it straight. But after awhile it will be bent again. He keeps his left hand fisted about 50% of the time at rest...but not tightly fisted.
This doesn't concern me all that much because I know he will probably get better with his hand and even if this were as good as it gets--that wouldn'tbe too bad!
However, I AM VERY CONCERNED...about a certain posture my son uses when he is upset. In variably if my son is upset, he will throw his head to the left and arch his back at the same time throw his left arm behind his head. It is a very violent motion. It seems like he can't control it. I am wondering if this will go away? Will it get better? Will it turn into something else as he matures?
I know my son has CP but no one will diagnose him because he is so young. I think its dumb not to call it what it obviously is. Obviously he had brain damage and obviously his brain is not communicating with the muscles of his left arm and hand perfectly. I am ok with that.
I want to know what is the benefit of having an official diagnosis? And I want to know if anyone here thinks its possible that my son won't be diagnosed? I also wonder about the back arching and what it means? I also wonder if my son may one day have seizures...and what can I do? I just want to know what to expect from him...and I want to know how to help him. He has an appt for an evaluation with Early Intervention in a month. But they won't do therapy for him unless he displays at least a 25% delay. What is a 25% delay?
I dont know much about cp myself.My son is 7wks old and has already been diagnosed. he has a wonderful neurologist, who believes in early intervention. If you get a diagnosis of cp it should help you to get therapy, and possibly govt aid such as ssi or medicaid. Some states also offer free therapy for disabled children from birth to age 3. If you are really concerned seek a second opinion from another neuro.
Has your child always arched his back? Mine does it all the time, it just looks like a giant stretch, but his head goes back soooooo far, it is unbelievable. My doctor said it is something that babies with cp do. Good luck to you and your family, You know your child best and if you feel there is a problem, get it checked soon.
Hi , this is my first responce. Your son sounds like a left hemepeligic and needs to be in physical and occupational therapy. Don't assume your child will improve. Your son is tightening his muscles and not using them. It can get worse. If your doctor won't diagnose him go to another so your insurence will pay for it. Plus most states have a program called First Steps that will pay for it even with out a diagnosis, but their own evaluation.
My daughter is two. She had a stoke sometime before four months gestational. But the perinatal specialist believed it was incedental and she didn't receive treatment. When she started to hold her own bottle she would grab it with one had at the bottom and lift. they were the playtex inserts. At nine months she couln't set up on her own and she started fisting the hand. She would also pull it up to her chest. She would also have problems sleeping and very collic. I asked for an MRI. The first neuro said it was "head trama" as if she had been dropped. I told him that was impossible and he knew of what was already found. I took her to another neuro and she explained everything including her MRI and all those words I had no idea what they meant. She eventually started speech, occupational and phycical therapy a year ago. She still struggles to walk and to use her right hand (her injury was on her left side) and doesn't talk words. When she gets angry she screams and grabbs her shirt. She can't stomp her foot or throw a propper fit so that's what she does. I have a feeling that's what your son is doing. Regardless, your son needs to be in these therapies. If you ask, there is no reason why you should't get it.
Quote:
Originally Posted by 3WonderfulOnes
Hi everyone, I just want to thank you all in advance for taking the time to read about my son, and appreciate any answers/comments you may have.
My son is 8 months old, but his adjusted age (he was premature) is 6 1/2 months.
When my son was born he had a grade IV interventricular hemmorage. This caused damage to the brain tissue in the right side of his brain.
He was initially being seen regularly by a neurosurgeon who was following him to make sure his ventricles remained stable (and there was no fluid build-up) and that he would required surgery or be shunted. Praise GOD! He did not need surgery and his neurosurgeon told me two weeks ago that he doesn't need to see my son anymore!
My son is developing pretty normally as far as milestones. He is sitting up unassisted, bearing weight on both legs normally, rolling both ways, and getting up on all fours and rocking (getting ready to crawl!). He does however display "mild asymetry" of the hands. He uses his right hand much more often and has better coordination with it. Most of the time, if he is sitting inactive, his left arm will be bent. I straighten it and he will keep it straight. But after awhile it will be bent again. He keeps his left hand fisted about 50% of the time at rest...but not tightly fisted.
This doesn't concern me all that much because I know he will probably get better with his hand and even if this were as good as it gets--that wouldn'tbe too bad!
However, I AM VERY CONCERNED...about a certain posture my son uses when he is upset. In variably if my son is upset, he will throw his head to the left and arch his back at the same time throw his left arm behind his head. It is a very violent motion. It seems like he can't control it. I am wondering if this will go away? Will it get better? Will it turn into something else as he matures?
I know my son has CP but no one will diagnose him because he is so young. I think its dumb not to call it what it obviously is. Obviously he had brain damage and obviously his brain is not communicating with the muscles of his left arm and hand perfectly. I am ok with that.
I want to know what is the benefit of having an official diagnosis? And I want to know if anyone here thinks its possible that my son won't be diagnosed? I also wonder about the back arching and what it means? I also wonder if my son may one day have seizures...and what can I do? I just want to know what to expect from him...and I want to know how to help him. He has an appt for an evaluation with Early Intervention in a month. But they won't do therapy for him unless he displays at least a 25% delay. What is a 25% delay?
I missed the bottom part. The physical thepast we started with told me what to say to the early intervent intake coordinater (we call it first steps) and look very closely at his speech and his fine motor skills. how much is he using his effected hand? Is it spastic? You may have to point out every detail to make it 25%. With a diagnosis you can skip all of that and get started on therapy. That's what we did.
Quote:
Originally Posted by 3WonderfulOnes
Hi everyone, I just want to thank you all in advance for taking the time to read about my son, and appreciate any answers/comments you may have.
My son is 8 months old, but his adjusted age (he was premature) is 6 1/2 months.
When my son was born he had a grade IV interventricular hemmorage. This caused damage to the brain tissue in the right side of his brain.
He was initially being seen regularly by a neurosurgeon who was following him to make sure his ventricles remained stable (and there was no fluid build-up) and that he would required surgery or be shunted. Praise GOD! He did not need surgery and his neurosurgeon told me two weeks ago that he doesn't need to see my son anymore!
My son is developing pretty normally as far as milestones. He is sitting up unassisted, bearing weight on both legs normally, rolling both ways, and getting up on all fours and rocking (getting ready to crawl!). He does however display "mild asymetry" of the hands. He uses his right hand much more often and has better coordination with it. Most of the time, if he is sitting inactive, his left arm will be bent. I straighten it and he will keep it straight. But after awhile it will be bent again. He keeps his left hand fisted about 50% of the time at rest...but not tightly fisted.
This doesn't concern me all that much because I know he will probably get better with his hand and even if this were as good as it gets--that wouldn'tbe too bad!
However, I AM VERY CONCERNED...about a certain posture my son uses when he is upset. In variably if my son is upset, he will throw his head to the left and arch his back at the same time throw his left arm behind his head. It is a very violent motion. It seems like he can't control it. I am wondering if this will go away? Will it get better? Will it turn into something else as he matures?
I know my son has CP but no one will diagnose him because he is so young. I think its dumb not to call it what it obviously is. Obviously he had brain damage and obviously his brain is not communicating with the muscles of his left arm and hand perfectly. I am ok with that.
I want to know what is the benefit of having an official diagnosis? And I want to know if anyone here thinks its possible that my son won't be diagnosed? I also wonder about the back arching and what it means? I also wonder if my son may one day have seizures...and what can I do? I just want to know what to expect from him...and I want to know how to help him. He has an appt for an evaluation with Early Intervention in a month. But they won't do therapy for him unless he displays at least a 25% delay. What is a 25% delay?
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