I have been searching the internet, for a forum, for parents of CP kiddos, so i can learn more about parenting my son. I have been very unsuccessful. I am hoping that maybe there are some CP parents here, that can help guide my family.
My son is 8 months old, as of yesterday. about 2 weeks ago, he was diagnosed with mild CP. This has been very hard to diagnose in him. He has had a variety of issues, since he was 2 months old. However, we just learned that some of his CP symptoms may have been present from birth. He stopped breathing the night he turned 2 months, and was hospitalized. Hospitalized again at not quite 3 months, again for not breathing. He came home that time on an apnea monitor, which we had for several months. He deals with severe constipation, with no physical finding for it. He is one of the exclusively breast fed infants with true constipation. He has dysphagia, and chokes when eating. He can only nurse for a few minutes, because he gets tired. He drools excesivly, has a weak right side, weak core, yet has hypertonia in his hands, and feet/ankles. Even at 8 months, he has very infant type movements with his arms. like he has no control. In order to grab a toy, he really has to concentrate. He has been in Physical therapy, twice a week, for 2 months, and just now is able to sit. (YAY) and he is starting to crawl, though he doesnt have enough control of his legs, so he army crawls, and he is very uncoordinated. He does not have a protective reflex, so if he falls from sitting, he wont put his hands down. He cant clap, mimic us, say any constanant sounds. No babbling, yet he will squeal, laugh, smile, and all that fun stuff!!!
Recenlty he has been quite inconsolable at night, and i think i figured out a couple days ago, he is having pain in his legs. his muscles get all tight, and he screams! It is horrible and sad, and i have no idea how to deal with it. I feel so bad for him. He has always been a bad sleeper, and it seems to be getting worse. he is waking bout 14 times a night, in a 10 hour period.
We were thinking he has seizures, but after several EEGs that came back normal, now we are wondering if he is having muscle jerking/spasms, and it just looks like seizures.
Anyway, i am still trying to learn about all of this, and i want to help him the best i know how. All the docs are telling me is, he is already getting PT, so we really cant do anything more. When he turns 12 months, we will look into speech therapy as well.
are there any great books i should get, websites i should visit, or people i should talk to?
I appreciate any help, or direction anyone can give me. Honestly, i am relieved at this diagnosis, we have not been able to figure him out for so long. and this answers all of our questions. Apnea, GERD, constipation, develpmental delays, lack of control of muscles. EVERYTHING we have ever wondered about him. It is nice to just have one focus. ( well 2, because he has mild metopic synostosis as well, but that is not a huge worry right now)
My son is 8 months old, as of yesterday. about 2 weeks ago, he was diagnosed with mild CP. This has been very hard to diagnose in him. He has had a variety of issues, since he was 2 months old. However, we just learned that some of his CP symptoms may have been present from birth. He stopped breathing the night he turned 2 months, and was hospitalized. Hospitalized again at not quite 3 months, again for not breathing. He came home that time on an apnea monitor, which we had for several months. He deals with severe constipation, with no physical finding for it. He is one of the exclusively breast fed infants with true constipation. He has dysphagia, and chokes when eating. He can only nurse for a few minutes, because he gets tired. He drools excesivly, has a weak right side, weak core, yet has hypertonia in his hands, and feet/ankles. Even at 8 months, he has very infant type movements with his arms. like he has no control. In order to grab a toy, he really has to concentrate. He has been in Physical therapy, twice a week, for 2 months, and just now is able to sit. (YAY) and he is starting to crawl, though he doesnt have enough control of his legs, so he army crawls, and he is very uncoordinated. He does not have a protective reflex, so if he falls from sitting, he wont put his hands down. He cant clap, mimic us, say any constanant sounds. No babbling, yet he will squeal, laugh, smile, and all that fun stuff!!!
Recenlty he has been quite inconsolable at night, and i think i figured out a couple days ago, he is having pain in his legs. his muscles get all tight, and he screams! It is horrible and sad, and i have no idea how to deal with it. I feel so bad for him. He has always been a bad sleeper, and it seems to be getting worse. he is waking bout 14 times a night, in a 10 hour period.
We were thinking he has seizures, but after several EEGs that came back normal, now we are wondering if he is having muscle jerking/spasms, and it just looks like seizures.
Anyway, i am still trying to learn about all of this, and i want to help him the best i know how. All the docs are telling me is, he is already getting PT, so we really cant do anything more. When he turns 12 months, we will look into speech therapy as well.
are there any great books i should get, websites i should visit, or people i should talk to?
I appreciate any help, or direction anyone can give me. Honestly, i am relieved at this diagnosis, we have not been able to figure him out for so long. and this answers all of our questions. Apnea, GERD, constipation, develpmental delays, lack of control of muscles. EVERYTHING we have ever wondered about him. It is nice to just have one focus. ( well 2, because he has mild metopic synostosis as well, but that is not a huge worry right now)
), hypotonia, speech delay and a rare spinal condition called basilar invagination... phew. Looks like a lot when I write it all out but he's doing great at 20 months. It took him until 16 months to crawl though so at 8 months if your little one is army crawling that sounds great!
