My grandson has been diagnosed with this very rare brain disorder
What can I do to help these kids? 22 and 23 years old. 2 babies. A newborn girl and 18 month old Aryan who is the one with this disorder. This is some seriously nasty stuff here kiddies and the outlook for these babies is grim at best. My son and his girlfriend have decided that the best way to handle it is to remain in Ohio (I'm in California) and pretend it's not happening. They go to the doctor, they have MRIs, CAT scans, blood work and they are paralyzed in fear.
Were talking about a very poor, VERY POOR couple and their 2 infants here.
There has GOT to be resources available. This kid weighs like 40 pounds and can't sit alone. He will need to be carried or in a wheelchair. He may lose sight, hearing. He may have total paralysis, he WILL have seizures and he will me retarded to some extent.
I hate being uneducated but I have no answers. I've scoured the net. Where can I find someone who can go to their house in New Philadelphia Ohio and give them hope, encouragement and even solutions?
first of all im sorry about your situation i was born with schizencephaly i am one of the lucky ones but one thing i do know every child is born and i believe for a porpose by working with doctors they will help you understand more of the condition and by understanding your grandson's condition they may be helping to save another childs life behind the condition there's a heart and soul look into Aryan's eyes and you will understand
My 4 yr old daughter has schizencephaly. I went through the gamut of testing, PT/OT, speech, 5+ appointments a week for two years. Then i was introduced to neuromuscular re-education, a therapy that is newly acknowledged by prominent neurologists on the forefront of neuroplasticity. I took my daughter to the Anat Baniel Center in San Rafael, CA. Now, I am a single mother on welfare, but I made it a point to save my daughter's social security payments so I could get her there. And it was worth every penny and sacrifice. Each time I paid the big bucks ($300 for 45min) to see Anat Baniel herself. The first appointment was at 10 months old, an hour later she moved her left arm for the first time ever, and it was to say hello to her grandparents! The second appointment was around 2 yrs, and during the appointment my daughter stood up by herself, and has done so ever since. People wait months to get to see Anat, travel from all over the world. Nothing, nothing, can compare to the dramatic affect to my daughters development and quality of life.
First contact Anat Baniel Method website and request info, you'll get a packet w/ free DVD's that document patients stages of therapy. Then you'll also want to contact Dalit, Anat's scheduler, and get set up to receive email alerts when Anat has a series of openings ever few months. Then be ready to respond and schedule right away. There was a scholarship fund at one time, but I'm not sure if it still exists.
Worse case is finding an Anat Baniel practitioner in your family's area, which will cost considerably less usually $50-$80/appt. But I don't think you'll see as great an affect, but it's still way better than PT/OT. The Anat website has an incomplete directory. Best yet is to have both ongoing appts close to home and an annual or biannual appt with Anat, or one of her top apprentices. If you have to choose between the two, go for one appt a year with Anat.
Keep hope alive, I'm very thankful my daughter is doing so well.
i have a 4yr old son with a severe case of schizencephaly. n im gonna do some research on this place you are talking about because i am always looking for new resources n always tryin to keep my hopes high! so thank you for posting what you did!!! God bless!
Can you guys tell me what your children were like as 6 months olds? My 6 month old daughter has just been diagnosed with schizencephaly and I'm just trying to be proactive and find out some info. She seems normal. She doesn't have any seizures (God willing she never does), she uses all her limbs completely normal, she eats normal and is even eating baby food and starting to chew. She knows the difference between me, her father, her grandparents, and has specific smiles for all of us. She stares at lights, and knows when the cat is near her because she grabs for it. She plays with toys, and sits up by herself really well for minutes at a time. Were any of your children like this or worse or better? She babbles A LOT. She will have little baby conversations and get excited and squeal and laugh sometimes (she just started laughing recently). God bless all of you women and men and children.
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