Hi,
Thanks for your post, I sent you a note with my email address
My 27 month old son was diagnosed with Athetoid CP and then Pelizaeus-Merzbacher was a possible diagnosis. Reading your post is almost as if I would have posted it! Our boys are a lot alike. My son arched and wouldn't sit wanted to stand or lay on his back all the time. He rolled over at 8 days old and hasn't stopped since. He doesn't have seizures. Head control is fine now but at 18 months old it was poor. He liked to keep his fists balled up. He has to have something in each hand when playing and eating. I would love to talk to you.
Is there anybody out there that can expalin all of this to me?
Hi
Thanks for your comments and your support
My son has many of the issues as your son. one half hour after his pertussis vaccination, he went limp and the seizures began. he is now 25 years old. first they did not think he would live a year, then five years, then 10 years and such. He has proved them all wrong.
He does have lots of physical ailments to deal with, but he is such a patient young man with a great sense of humor and a love for game shows and all sports from baseball to bowling. I was told that when kids with seizures hit puberty, the seizures either get worse or better. They were right, but thank God his got better. I am no doctor, but below are some of the issues we dealt with. If I give advice, it is what I now know but wish I had known back then. So, my prayers are with your whole family. and it does affect the whole family. I have found it either brings you and your spouse together or unfortunately it can take a toll on the relationship.
Although my son had normal EEG's he had serious seizures. The neurologist said that the brain can actually learn to have seizures and if good control has not happened by the age of two they will start having abnormal EEG's. Unfortunately, back then they did not have half of the medications and options they do now.
Among the things that I wish someone had told me... Don't sweat the small stuff. I think back on how many times I rushed around trying to make the house look good or to attend the many invitations from friends and family. It is much better to pace yourself, it is ok to say no, real friends will remain and it is better to have one or two great friends than to have lots of superficial friends. You may have to learn to say no. Take care of your own health, you will be of no use to your son if you wear yourself out. Accept help from others, from respite care and from friends, family, neighbors and your church. There are lots of services, but sometimes you have to look for them. trust your instincts, if you feel there is something wrong and feel that no one is listening, keep looking for answers. It took five years for the doctors to listen to me and check his stomache. He would projectile throw up and gag on foods. It turned out that the opening of his stomache was was too big and the bottom of his stomache emptied too slow. He had surgery and almost immediately he could eat and keep his food and medicine down. Do not take no for an answer, you are your sons advocates, you are his voice. be open to new ways of thinking, there is a field called sensory integration - meaning - some people learn by listenening, some by watching, some by hands on and some by reading directions. Some people have and overactive or underactive reaction to stimuli from the five senses. some kids crave spinning and motion, some kids are hyper sensitive to touch. By recognizing how your son processes information and stimuli you can help him be more comfortable during PT and OT and different settings. Do not let him go without enough PT. Because my son had a few years of not enough therapy, his feet and hands are now knarled and atrophied.
sometimes the medical field is so busy trying to keep on top of the various health problems that may crop up, therapy is often put on hold, but it is much better for your sons life long health and comfort.
sorry so long, feel free to contact me any time.
Carly
SORRY PARAGRAPH 4 SHOULD OF READ
He has recently had an MRI scan and the doctor has said he has generalised / generalized cerebral hypomyelination.