|
Post by matthewsmom on Aug 1, 2009 22:56:59 GMT -5
Laura, Thank you for your nice note. I am very happy to read that your daughter had the opportunity to become involved in helping other kids at Vacation Bible School. What a blessing. It must have made her feel so good being involved in something she enjoyed and being able to help others and made you so proud seeing her go forward in a positive direction....growing up. How nice for you to hear from others that she was a big help. That's wonderful! Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Jul 30, 2009 17:28:17 GMT -5
dakotah, I'm so glad that you found the information helpful. Seeing as you are still looking for a Neurologist...that would be another great reason to send a note to the ACC-Listserv. Many parents come in asking for good doctor recommendations in their area that other parents are taking their kids to see. It's very easy to become a part of the ACC-Listserv. How it works is that you sign up by going to the link above in my original post and you fill out the information it asks for on the form. You don't have to put your full first and last name. I just put in my first name and the last letter of my last name. Once you sign up you will need to wait to receive the confirmation e-mail from the ACC-Listserv and then you will click on the link that comes in the e-mail. That will officially sign you up. Yes, it does come in as multiple e-mails. Each time someone in the group sends a note to the Listserv it will be e-mailed off to everyone in the group to read. Some people choose to receive the e-mails in one daily digest (all at once-daily) and others receive each e-mail as they come in. I prefer to receive the e-mails as they come in. Some days you may receive 10 or 15 e-mails and other days you may receive A LOT more e-mails. It just depends on how many people write notes that day. Each person in the group is limited to sending only three e-mails per day. Of course, you will also see many other topics and off topic conversations that may or may not pertain to you and your child and may not be of interest to you. You can also leave the group anytime by going to that same link as well and signing off the Listserv. If you decide to join the ACC-Listserv and have any trouble just send me a note and I will be happy to talk you through it. Or, if you prefer to just have me send your note to the Listserv on your behalf I am happy to do that. Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Jul 30, 2009 13:30:45 GMT -5
dakotah, Welcome to the ACCA message board. Some of the symptoms and medical issues that you shared about your son who has hypoplasia of the corpus callosum I have seen other parents mention that their child also has in another support group I belong to through the ACC Network-ACC-Listserv. lists.maine.edu/cgi/wa?SUBED1=acc-l&A=1 Several years back there was a mom who had 5 children. One of her kids has ACC and she also had tourette syndrome. The mom also had two other children who had tourette syndrome. I have been searching through the archives in the ACC-Listserv and I also found another parent with a child who has ACC and tourette syndrome. I haven't looked at every single post in the archives so there could be more but it is something that I haven't seen often when corresponding with parents who have a child with ACC or a corpus callosum disorder. Some kids who have ACC also have ADHD and/or behavior issues. Many kids who have ACC have sensory integration issues. This is definitely a common trait sometimes seen with ACC from my experience with talking/writing with parents who have a child with ACC over the years. I personally have not seen Wolff-Parkinson-White (WPW) syndrome mentioned before by a parent of a child with ACC but that doesn't mean it isn't possible. When my son, Matthew, was diagnosed with ACC at four months old we were told by his doctors that because the corpus callosum is midline in the brain (in the middle) there is the possibility of other midline defects that can occur. The heart is one of those midline places and because Matthew was born with a heart murmur and then diagnosed with ACC he was immediately seen by a pediatric cardiologist after his diagnosis of ACC for tests to rule out a possible heart defect. After testing Matthew only had a heart murmur (which he outgrew) and no heart condition. I'm not sure if you have already been told or read that when someone has ACC or a corpus callosum disorder there is the possibility of other medical issues being involved such as metabolic disorders, a genetic syndrome and chromosomal anomalies. As for the vomiting you mention I have seen that talked about when a child with ACC has a shunt or hydrocephalus. There is also the issue of vomiting seen when a child has stomach issues or g-tube and feeding issues too. A lot of kids who have ACC also have chronic constipation. My son suffers from this. A lot of kids who have ACC also struggle with becoming potty trained. Many parents mention that their child is late in learning to use the potty and become fully potty trained. My own child, Matthew, is not potty trained. Because Matthew was becoming more constipated and was struggling with walking (due to heel cord tightness and foot issues) more than normal and because he wasn't yet potty trained he was sent for an MRI to rule out something called tethered cord. It is my understanding that it can cause the sensations/feelings of needing to go potty to not be felt. Some kids who have ACC do have tethered cord and require surgery to fix this medical problem. After Matthew's MRI it was found that everything was normal and he should have normal sensation. However, at 15 years old, Matthew is still not potty trained. I would suggest that you consider posting your note in the ACC-Listserv e-mail support group because there are hundreds of parents who have a child with ACC who will see it and have possible input for you. If you like I would be happy to copy and paste your note to the ACC-Listserv (remove your name if you want) and send any replies that I receive to you. Just let me know. Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Jul 27, 2009 13:25:04 GMT -5
Lynnea, Sarah & Guest-(keeping condition from child): Thank you to each one of you who took the time to answer the question and for your willingness to share openly your own thoughts regarding knowing or not knowing about your ACC diagnosis. It actually took a little twist that I hadn't thought of when I presented the question...the possibility of parents making the choice to withhold the diagnosis of ACC from their child in the best interests of their child. As the mom of a child who has complete ACC, it is always enlightening to get the perspective of an adult who has ACC so again I thank you for being so open and willing to share your feelings. Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Jul 27, 2009 11:49:28 GMT -5
Sarah, Happy Birthday!! Hope your birthday is filled with lots of love and all the things you love the most. Enjoy your very special day. Sandie *Mom to 15 year old Matthew with complete ACC* P.S. I am also on the ACC Listserv and enjoy all you share there. I look forward to reading what you will share on this message board.
|
|
|
Post by matthewsmom on Jul 24, 2009 18:36:26 GMT -5
Happy Birthday to you, Happy Birthday to you (a couple days late). I hope that you had a very special day full of everything that you love, wordnerd2007. I left on July 22nd to go out of town on a family vacation at the beach.
Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Jul 20, 2009 21:07:36 GMT -5
Hi Everyone... We have talked about this subject of social challenges and our kids a little bit before. Well, we had one of those out-of-the-blue moments last night with respect to a social activity presenting itself with Matthew that I thought I would share with you here. I wrote the story on the ACC Blog and if you're interested you can read it at the link below: agenesiscorpuscallosum.blogspot.com/2009/07/friends.htmlSandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Jul 19, 2009 13:10:08 GMT -5
Laura,
I would be happy to e-mail with you.
I understand completely how sensitive the topic of puberty is and how posting in open forums on such matters is uncomfortable.
Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Jul 16, 2009 2:11:00 GMT -5
Lynnea, Thank you very much for your nice comment. I am so thankful to have such a wonderful message board (thanks to you) and to have met such nice people who are a part of this message board. It is a blessing. I look forward to reading each new post everytime someone leaves a new comment. God Bless you, Lynnea Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Jul 15, 2009 17:29:40 GMT -5
Laura, That was such a sweet thing to say. Thank you very much for your kind words. I am so glad that the information was helpful and I am happy to help. If you would like to discuss anything about puberty more please feel free to e-mail me. I know that the subject of puberty and the delicate issues surrounding it are not always easy to discuss openly in a forum. hope@aracnet.com Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Jul 15, 2009 1:28:44 GMT -5
laura,
I am not an adult with ACC and I hope that the adults won't mind that I am replying to this post.
When my child, Matthew, who has complete ACC was very little I was told by one of his doctors that puberty can sometimes be affected due to the corpus callosum being missing. It was explained to me that because the corpus callosum is midline in the brain and it sits very close to where the pituitary is there is a chance that the pituitary may also have a problem. The pituitary is what controls the hormones and begins the onset of puberty. A child's growth can sometimes also be affected as a result of having ACC. Some kids with ACC actually need to go on growth hormone to help them grow.
Matthew's pediatric endocrinologist sees Matthew on a yearly basis to be sure that his hormones are functioning normally and to be sure that he entered into puberty at a normal time. She explained to me that sometimes kids who have ACC may enter into puberty way too early and that if that happens puberty will need to be delayed. She also said that some kids with ACC can enter puberty late and some may not enter puberty at all and if a child who has ACC doesn't enter into puberty then a pediatric endocrinologist would be able to give them the hormones necessary to help puberty begin.
Matthew began entering into puberty somewhere around 14 years old but it wasn't until about 15 that he was really in puberty. At his last endocrinologist appointment his doctor checked all of his hormone levels and they were right where they should be.
I asked her if some kids who have ACC might start to enter puberty and then it slows down or stops without fully entering puberty. She told me that is also a possibility but that in Matthew's case he is doing very well and she doesn't see that happening in his case.
So, yes....ACC and the corpus callosum being missing has the possiblity of causing problems with puberty but doesn't mean that it will happen. Matthew has been doing just fine with puberty and it started without any medical intervention.
Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Jul 12, 2009 20:57:57 GMT -5
msp123, I think that it's very normal for every parent to think and wonder about their child's future when your child has Agenesis of the Corpus Callosum or a corpus callosum disorder. I am definitely not immune to it and this subject has come across my mind (and tortured my mind) to various degrees over the years. Yes, I definitely wonder about what Matthew's adulthood will be like since he is already 15 years old and still requires a great deal of assistance but all I can do is take it one day and one step at a time, continue to help Matthew become as independent as he possibly can be and give it to God because I definitely cannot take that worry upon myself. God only knows I have tried to take that route one too many times. Every child with ACC is so different. There are many kids who make great strides, continue to make progress, graduate high school, go on to college, get a great job and have a family. Since your daughter is only 7 years old it is so hard to predict what her future will hold and to know where she will be in a few more years let alone when she is 12 or 15 or 18 or 25 but I definitely understand the feelings of questioning the future of your child into adulthood. Sandie *Mom to 15 year old Matthew with complete ACC* Reading some of the threads makes me think more and other people's struggles and the future as kim says i have it easier as well as she is able to brush her teeth but doesnt really do it right im quite embarressed to say they are not as good as they should be she does try but if we dont watch her she would mess around with it and squeeze it out into the sink .. the washing and dressing thing with her just putting on whatever even if it could be dirty and needing some help .. as for shoes we just buy velcros coz she can only tie in knotts i have been thinking recently of my daughters future and if she will continue to need my help as a teenager obviously this is the case with matthew as he has got to teenage years do you wonder now about adulthood ??
|
|
|
Post by matthewsmom on Jul 11, 2009 1:35:42 GMT -5
I can remember being asked this question by the Early Intervention team that would come to our home to work with Matthew on therapies when he was younger. One of the questions they would ask me periodically is: "What are some of Matthew's strengths?" I would nearly stop in my tracks and have to shift gears. This question was actually difficult for me to answer because my mind was always caught up in all of his needs and challenges and I was focused on everything he needed help with and his therapies and what he wasn't able to do. I would literally have to REALLY think hard just to come up with one or two of Matthew's strengths. I thought it would be fun to share what our kid's strengths are in an effort to get to know them a little better and to help focus on what they are good at and what they CAN do. My child, Matthew, who has complete Agenesis of the Corpus Callosum is very happy all the time. People who don't even know him often comment about that. He smiles all the time, laughs a lot everyday and he is very social. Matthew loves to be around other kids and watch them play. Matthew is very good at using the computer. He is also good at using his touch screen augmentative communication device (DynaVox V) and he can find anything he wants to say using memorization to find the exact screen that has what he wants to say. Matthew can throw and catch a beach ball and other small, soft balls very well and he loves to play ball with Dad. Matthew really likes to play with remote control cars and can do it by himself when the remote only requires one hand. Matthew can ride an adaptive trike really well by himself. Matthew loves music. He plays his casio keyboard. He is involved in a music therapy class where he gets hands on to different musical instruments and he has been making music on a cello. He has actually been holding the cello and using the bow to move back and forth across the cello strings. I look forward to hearing more about all the things that each one of your kids can do if you may want to share. Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Jul 9, 2009 19:14:22 GMT -5
Hi Araceli, Welcome to the message board! For others here who don't know you, I want to say that I have had the pleasure of e-mailing with you and keeping in touch for quite awhile now and it's great to have you here! And I am SO super happy for you that Brianna is crawling!!! Wow! That is absolutely wonderful news. My own son, Matthew, didn't learn to crawl until he was somewhere between 2 and 2 1/2 years old so I completely understand the feeling sad and beginning to lose hope feeling. I can also relate to the "seems like out of no where she started crawling" statement you made. There were quite a few times that I was seriously questioning IF Matthew would learn certain things we worked and worked on for months and months and sometimes a year or more and then like a bolt of lightning he learned it and I was shocked as I watched him finally doing something that I wondered if he would ever do! We actually worked with Matthew (his Early Intervention Therapist) in our home for over a year on crawling and Matthew just didn't learn it so the physical therapist said we could just move on to cruising the furniture and walking and that's what we did without Matthew learning to crawl but it was within a few weeks or so after we began the learning to cruise therapy that Matthew started crawling so all of that therapy work to learn to crawl was being processed inside Matthew and he did it. We kept working on the cruising and walking even though he had just started to learn to crawl. I don't recall having any of Matthew's therapists giving me a certain time frame to expect when he would learn to do something and I can see where it would cause you to question how the therapist can be so sure as to when she can see Brianna learning something. On the other hand, I also think that having a therapist who is motivated and positive and full of gung ho spirit is a good thing too. It doesn't necessarily mean that you have to agree with the therapist's time frame given of when she expects or predicts or estimates when Brianna will learn to do something she is working with her on though. Yes, I do understand what you "vented and blurted out" I can see, from a parent's perspective, that it is also painful and disappointing to get your hopes up and believe that your child will learn to cruise or walk at a predicted time and then perhaps see that time come and go without your child learning the skill. There is always that possibility but there is also the possibility that your child will learn the skill and maybe even in the predicted time frame that the therapist sees....maybe it will take a little longer or maybe not quite as long but however long it takes....let yourself always keep the door open to the possibility and continue working on each new skill believing that you are doing everything possible for Brianna to help her develop to her fullest potential. You said one thing that speaks loud and clear: "I just dont want to set a date for these things..." Then just don't. That's ok. My best advice is try not to focus too much on WHEN she will learn the skill. You don't have to set a date for when she will learn new things. Keep in the back of your mind (if you want to) that Brianna's therapist sees her walking in 6 months and do all you can for Brianna to help her achieve that goal of walking. If the 6 months come and go and Brianna still isn't yet walking then you won't be as disappointed but you will still know that she WILL walk and you will keep working on teaching her how to walk until she learns. I'm so glad that you're here and I look forward to all that you share. Congratulations that Brianna IS crawling!!! Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Jul 8, 2009 21:05:33 GMT -5
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*
|
|