What is schizencephaly? I get asked this all of the time because it is something Sean has. There is not much out there of what it is, why it happens, and everywhere I read it says that it is rare.
Here is the national institute of Neurological Disorders and Strokes definition:
Schizencephaly is an extremely rare developmental birth defect characterized by abnormal slits, or clefts, in the cerebral hemispheres of the brain. Babies with clefts in both hemispheres (called bilateral clefts) commonly have developmental delays, delays in speech and language skills, and problems with brain-spinal cord communication. Individuals with clefts in only one hemisphere (called unilateral clefts) are often paralyzed on one side of the body, but may have average to near-average intelligence. Individuals with schizencephaly may also have an abnormally small head, mental retardation, partial or complete paralysis, or poor muscle tone. Most will experience seizures. Some individuals may have an excessive accumulation of fluid in the brain called hydrocephalus.
My definition is of what Sean has is called closed lip schizencephaly. Basically he has an area of his brain that is not connected. The best way to describe it so everyone who understand is that he has a whole in his brain. The neurologist thinks because of the closed lip schizencephaly which means Sean's brain did not develop correctly during brain development may have been the reason Sean suffered chronic ischemic strokes while in utero.
Sean is suffering seizures he is having complex partial seizures and is currently on medication and the closed lip schizencephaly is affecting not only the parietal lobe where the stroke happened but the frontal lobe, and the temporal lobe too. He also has poor muscle tone, and goes to tons of therapy.
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17 comments:
Hey Erin! Things are going well for us, one day at a time...onward to ONE full force =)
I love the pictures of Sean, his so cute and getting so BIG. I also love your positive attitude, very inspiring. Keep up the good work!
Hi Erin,
Thanks for posting the definition of Schizencephaly, it was very informative. It is scary to read medical definitions ..but I think it's safe to say that the definition of Sean is super smart, cute, and full of fun energy :) Love the pictures in your last post by the way!! :)
Annnd here's the segway haha. My parents just got back from vacation (chicago,nyc and boston) and while they were there they went to the Navy Pier in Chicago (Aug 28th) and because I have a blog and they are familiar with some of your posts they had seen pictures of Sean and anyways my Mom said she saw a little boy that she thought looked like Sean, cute as a button and having a great time riding around on Thomas the tank engine, but then decided that just could not be as that would be too big a coincidence. Anyways, she mentioned this to me and so I thought I would ask.
That sure would be a funny coincidence..
Thanks for the info, Erin! I actually didn't know what it was until reading your post! Hope all is well with you guys! Take Care...and I've said it before and I'll say it again, Sean is too cute!
My daughter also has schizencephaly your definition was very informative. We get asked about it all the time too.
Christine, thank you. Did your parents life Chicago? It is a great place to visit because it is like a mini- NY only cleaner:)
We went and rode the Thomas train at Union, IL in the middle of August. He also does have the peg pegero train that goes on tracks at our house. That would have been such a coincidence if they saw us:) What did they do in Chicago while they were here?
Hi Erin,
That is EXACTLY what they said about Chicago (NYC but cleaner) They loved it there. They said NYC is fun to visit but Chicago would be a great place to live. They were on a baseball game hoping vacation so went to Wrigley Field in Chicago, Fenway in Boston and Yankee stadium in NYC. I think in addition to the game they saw they went to the John Hancock observatory, did lots of shopping and also went on a boat tour through the waterways. They were only there for a few days. Thought it might too much of a coincidence but had to ask :) haha.
PS: Thanks for posting the links in your newest post. It's hard to locate all this information isn't it. I'm always googling..
thanks im doing a school project on this you gave me mush information!
Thanks for writing about your child's schizencephaly. We're doing a ton of research now because the boy we're planning to adopt has been diagnosed with it. I'm wondering if you'd share an update on your boy's progress. How is it affecting his development and your family? If you'd rather not share, that's ok too. I do hope he's doing alright.
Chris Romano
http://bringhimhomesoon.blogspot.com
Hi,Thanks for the info.My daughter has closed lip Schizencephaly, & CP,on on her left side.She also has severe ear problem,we have had 3 ear surgeries.My daughter is 24 yrs.old.She functions normally,daily.She has alot of pain,though.Her ear always hurts,they dont know why.Her joints always hurt,her left side is all shorter than her right,so this causes pain,alot.I wanted to know if there is anyone out there,that has a child with CP,& Schizencephaly that is around my daughter's age,so they can talk?She has no-one around with the same conditions as her,so its hard.She has also been experiencing "panic attacks"alot lately,anyone have them,also?Thanks so much.Please contact me at: aprillynne123@msn.com
we just learned that my 8 month great graType 1 schizencephaly. She does not respond to any toys. She does have a beautiful smile. Don't know what to expect.
I'm 30 with a closed-lip schizencephaly as well as Absense of the Septum Pellcuim. What you describe sounds a lot like me, but no ear problems, though I have septo-optic dysplasia and started seizures at age 15. Loooots more to say, she can talk to me! Cherie1982@ymail.com
just ran across your BLOG. My daughter will be 35 in a week. We adopted her 35 years ago. At that time X-ray was "state of the art." We discovered she had cerebral palsy at 15 months, but only discovered she has schizen about a year ago. She is a courageous, loving, intelligent young woman who graduated from college with a degree in History. So be hopeful, be encouraging, and LOVE those children.
I have same thing and I'm now 53
I'm a college graduate and hs graduate and work at bed,bath,beyond for nineteen years
Hi,
My adopted son Skyler has open-lip bi-lateral Schizencephaly. He is now 15. He is very delayed, non-verbal and non-ambulatory but still enjoys the loving care he receives. We were told he would not likely live past 8 years but he is doing pretty well. His seizures are controlled and he had scoliosis surgery. Lots of people have told us to stop intervention but most days he is happy and smiling so we keep on. We believe that when it is God's perfect timing he will peacefully go on to the wonderful life he has with the Lord. Don't believe that these children have no role and place in this world. Our son has taught us love, courage and compassion.
My son 23 has been a victim of Chronic SCHIZENCEPHALY for many years. I am excited to share this testimony as i have been sad and confused for the past 23 years of my son been a victim of SCHIZENCEPHALY. Anti-psychotic medicine they induce psychosis, never helped rather worsened the situation, Homeopathy medication is good but has a lot of limitation too. I looked for solution everywhere all to no avail until I contacted a Herbal Doctor whose medicine works perfectly for him, my son situation has greatly improved which is what I have always wanted. If you have related problem, don't lose hope, contact him (ronniemd70@gmail.com)
I don’t want people to feel sorry for me, that’s not why I am writing this post. My child six years ago, was born with Bi-lateral closed lip schizepcephaly, which is even more unique than the regular cases. Due to this disability, she also developed Cerebral Palsy affecting the left side of her body. We’ve learned the part of her brain which has been affected has also impaired her ability to reason. We’ve been lucky so far though it affects everyone differently and she had been on the very mild side of everything. Another thing we had to dealt with much are seizures. She was highly prone to having one or multiples and we’ve seemed to look out with some petite mals when she was younger and they occurred in her sleep more than any other time.
Luckily, everything seemed to be okay after she took an Herbal Medicine. I wish I could say that’s the end of it because she havn't had any symptoms since then.
Having a child with special needs is difficult. You sit living in fear of the reality your child may face, never really knowing what will happen until it does. Do not expose yourself to more danger, use a herbal remedy that is safe and effective. If interested contact him:
ronniemd70@gmail.com to find out more information about the disorder and treatment.
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