Hi Debbie, (doapathlgy)
Welcome to the message board.
My heart goes out to you with the recent diagnosis of hypoplasia of the corpus callosum for your two year old son. I can remember the day that my own son was diagnosed with agenesis of the corpus callosum (ACC) just like it was yesterday. He was four months old and diagnosed via a CT scan. He later had an MRI.
It sounds like you and your son have had a very bumpy road with everything that you have already been through together....the premature birth, multiple surgeries and then the diagnosis of hypoplasia of the corpus callosum, neuronal migration disorders and autism.
I think that one of the most difficult and worst things to deal with (besides the diagnosis of a corpus callosum disorder and other disorders) is the "wait and see" period. So many parents who have a child with agenesis or partial agenesis or hypoplasia of the corpus callosum find the waiting to see how it may affect their child terribly difficult to endure. I was the same way. I wanted a prognosis. I had a million questions and very few of my questions received a specific pinned down and helpful answer. More often the answers were always going back to the same one that I didn't want to hear anymore...which was...we don't know and there is no way to tell.
It wasn't until I actually attended an ACC Conference and had my eyes opened to the VERY broad range of how a corpus callosum disorder can affect each person differently that I began to understand more clearly (seeing it for myself) what the doctors were telling me all along.
I agree with you that it would be so much more helpful if the doctors would inform parents of what the broad range of how corpus callosum disorders might affect a child is rather than telling a parent that there is no way to know yet if or how it may affect your child. I think that there are still many doctors who haven't had patients with a corpus callosum disorder and they truly don't know what to expect.
Also, there have been many parents who are told the worst case scenarios from their doctors after their baby/child is diagnosed with agenesis of the corpus callosum or a corpus callosum disorder and not even given any hope.
Many parents comment (in another group I belong to) that their kids are doing all the things that the doctor said they would never do....walk, talk, etc.
Some parents are not even told about their child's corpus callosum disorder diagnosis and some adults find out late in life that they have a corpus callosum disorder through picking up their medical reports and reading it for the first time never having been told by their doctor.
I can absolutely relate to what you wrote about how it seems like everytime you turn around they are finding something else wrong with your child. I dreaded all the testing, then the waiting for test results, going to the doctors and specialists, worrying, wondering, waiting. It was overwhelming and an emotional roller coaster ride that I did not want to be on.
I don't know how much information you have already found out so I will just start at a beginning point and share with you the things that I have learned as a result of dealing with my own son's ACC and apologize if you already know this:
There is no known prognosis for how ACC will affect a person. ACC has a very broad range of effects from mild learning disabilities to severe mental and physical delays and challenges. ACC can also be seen with many other medical conditions such as genetic syndromes, chromosome anomalies, metabolic disorders, seizures, eye problems, hearing impairment, midline defects, growth issues, endocrinology issues, etc.
When someone is diagnosed with agenesis of the corpus callosum or partial ACC they are at risk for having seizures. Because people with ACC have a brain anomaly (a missing corpus callosum) there is always a risk for having a seizure. A normal EEG does not mean that the person won't ever have a seizure. They are always at risk for seizures. It also doesn't mean that everyone who has ACC has seizures. Many people who have ACC don't have seizures.
Dr. Elliott Sherr is a neurologist who works at University of California, San Francisco and he has seen many of the kids who have a corpus callosum disorder (including hypoplasia of the corpus callosum) who belong to another support group-the ACC-Listserv. He is also doing research on the corpus callosum right now and disorders of the corpus callosum and you can apply to participate in his research. The link below will show you more clearly what hypoplasia of the corpus callosum looks like on an MRI as well as the other types of corpus callosum disorders:
www.abc.net.au/rn/allinthemind/docs/ACC_Brain_images_courtesy_Dr_Elliott_Sherr.pdfMore information with respect to Dr. Sherr's research can be found at the link below:
neurology.ucsf.edu/brain/callosum/callosum.htm Dr. Sherr also spoke at a previous ACC Conference and his handout can be found below titled: "How to Get the Most from Your Neurologist Visit"
www.nodcc.org/pdfs/Conference_Handouts/conferencesherr_neurol_04.pdfSome kids who are diagnosed with a corpus callosum disorder are also diagnosed with autism.
There is a book that I am reading right now about autism written by Temple Grandin titled: "Thinking In Pictures and Other Reports From My Life With Autism" and it's quite good. I borrowed it from the library. Temple Grandin, the author, is actually autistic herself and she gives incredible enlightenment into the world of autism. You can take a look inside the book at the Amazon link below:
www.amazon.com/reader/0307275655?%5Fencoding=UTF8&ref%5F=sib%5Fdp%5Fpt#readerI am a strong believer in getting started as soon as possible with therapies for your child. I was even told by Matthew's Neurologist that they don't know why or how but that sometimes (through physical therapy, occupational therapy and speech therapy) a child who is missing the main and largest communication pathway in the brain (the corpus callosum) is able to make connections on a deeper level and learn new things. We started my son, Matthew, in Early Intervention therapies as soon as he was diagnosed with ACC. Even though Matthew is not as high functioning as other kids who have a corpus callosum disorder I truly believe that he is where he is today due to the therapies he received.
For me, the first year after Matthew was diagnosed with ACC was the most difficult. I cried a lot. My emotions were a mess and I was completely overwhelmed with everything. One day I wanted to know everything about ACC and the next day I didn't want to talk or think about it. There is a grieving process that takes place and everyone is different in terms of how they deal with the diagnosis and how they come to terms with it. It definitely gets easier to deal with....but it takes time and you do have to allow yourself to feel those feelings and move through them as painful as they are.
If you may ever feel like you want to talk please feel free to e-mail me anytime. I am happy to listen and share with you anything about Matthew and what I have learned.
hope@aracnet.com
You and your precious little boy are in my thoughts and my prayers.
Sandie *Mom to 15 year old Matthew with complete ACC*
