|
Post by matthewsmom on Oct 2, 2012 21:24:08 GMT -5
KNOWING ALEX: Life with Agenesis of the Corpus CallosumA new book co-authored by 24-year-old, Alex Reisenauer, who has ACC, and his mother, Cindy Mauro Reisenauer, who is also the illustrator of the children's ACC & Me book. The valuable, highly informative content inside KNOWING ALEX: Life with Agenesis of the Corpus Callosum, together with the unique ability to gain insight and become enlightened about ACC, through the dual viewpoints and perspectives of this mother/son writing team (in regard to how ACC personally affects their lives) is impressive, inspiring and absolutely amazing! This remarkable book will speak not only to parents who have a child with ACC, adults with ACC, and new parents-to-be who are expecting a baby with ACC, but will also open the eyes and hearts of so many others, including teachers, school staff, tutors, as well as doctors, other professionals and more. More information about this book can be found at the link below:agenesiscorpuscallosum.blogspot.com/2012/09/knowing-alex-life-with-agenesis-of.html
|
|
|
Post by matthewsmom on Oct 2, 2012 21:22:32 GMT -5
KNOWING ALEX: Life with Agenesis of the Corpus CallosumA new book co-authored by 24-year-old, Alex Reisenauer, who has ACC, and his mother, Cindy Mauro Reisenauer, who is also the illustrator of the children's ACC & Me book. The valuable, highly informative content inside KNOWING ALEX: Life with Agenesis of the Corpus Callosum, together with the unique ability to gain insight and become enlightened about ACC, through the dual viewpoints and perspectives of this mother/son writing team (in regard to how ACC personally affects their lives) is impressive, inspiring and absolutely amazing! This remarkable book will speak not only to parents who have a child with ACC, adults with ACC, and new parents-to-be who are expecting a baby with ACC, but will also open the eyes and hearts of so many others, including teachers, school staff, tutors, as well as doctors, other professionals and more. More information about this book can be found at the link below:agenesiscorpuscallosum.blogspot.com/2012/09/knowing-alex-life-with-agenesis-of.html
|
|
|
Post by matthewsmom on Jun 5, 2011 13:57:41 GMT -5
Hi macs, Thank you very much for answering the questions and sharing your own ACC story with others here on the message board. I read your story eagerly this morning. I am the parent of a child, Matthew, who has complete ACC (he is completely missing his corpus callosum). He is 17 years old. He was diagnosed with ACC when he was 4 months old. Having only been two weeks since you received the diagnosis of ACC for yourself, how are YOU doing? It's a shock! And yet it may also help give you some answers and awareness for all of those things you struggled with as a child (and may still struggle with). I would like to know if you would be ok having your ACC story (what you shared here) to be posted on the ACC blog (with all of the other adults who shared their stories)? That way a lot more parents who have a child with ACC and other adults with ACC (who are not part of this message board) would be able to read what you wrote. You can read the other adult ACC stories at the link below: agenesiscorpuscallosum.blogspot.com/search/label/Adults%20with%20ACCIf you are comfortable having me post your own story on the ACC blog please send me an e-mail or you can leave a note here on the message board. Sandie E-mail: hope@aracnet.comI understand completely if you are not comfortable with the idea. I will wait to hear from you. Also, I sent you a private message here on this board. You can read it by logging in and clicking on the new messages at the top right hand side of the page where it says: "Hey, macs, you have ____ messages, ___ are new"Again, I am grateful to you for writing your story and I enjoyed reading each one of your answers to the questions. It was very interesting and enlightening. If you have any questions please just ask. I would be very happy to help in any way. Sandie *Mom to 17 year old Matthew with complete ACC in Oregon* P.S. If you would like to share your story on the ACC blog, would you like to include a picture of yourself (like some of the other adults did)?
|
|
|
Post by matthewsmom on Apr 14, 2011 13:14:51 GMT -5
Hi Ami (mom22inga),
Thank you for your reply and for all of the additional information that you shared.
I'm sorry for everything that your family is going through right now and for the effects that the seizures are also having on your son, Isaac.
I hope that the seizures will soon be under control and that the aggression will stop. Isaac and your family will be in my prayers.
I just sought input (for you) from the three other ACC support groups that I belong to. I have already received a few replies from other parents and from one adult who has ACC and seizures. I will post those replies here for you to read.
And I will continue to send you any additional replies from other parents who have a child with ACC.
Sandie *Mom to 17 year old Matthew with complete ACC in Oregon*
Medical Disclaimer: Please be advised that these replies are not medical advice. Please seek the advice of a qualified physician for your child's medical needs.
1st Reply from Parent:
"Hello, My son Riley (5 in 2 weeks) has a DCC and seizures along with many other medical problems. His seizures started about a year ago with focal seizures and since then has progressed into a mixed bag of multiple daily partial and generalized seizures, uncontrolled by meds. Right now he is taking depakene, zarontin, keppra and carnitor. One thing about Keppra is it can cause aggressiveness. Its one of the biggest reasons kids come off keppra. Kids with developmental delays are at a higher risk for that side effect. Sometimes adding a B6 supplement can help with the "keppra rage". As far as finding a good pediatric neurologist in your area, you can always go through the Epilepsy Foundation, they have an online database you can search. The foundation can refer you to a neuro that specializes in seizures. Good luck!" Jessica
2nd Reply from Parent:
"My son is 3 and he has been having seizures since he was 8 months old. He's been on many different meds including depakote and keppra. Up until a couple of months ago he had been on both keppra and carbatrol (tegretol) with no sucess. The docs decided to add frisium to the mix and it seems to be working for him. The next step is to slowly take him off keppra. His sizures also start on the temporal lobe and started as focal but then generalize. I hope this helps:)" Emilia
3rd Reply from Adult with ACC:
"I have no doctor advice but anything in the Tegretol/ Carbitrol family makes my seizures infaniately worse...so don't let then try to say oh it's not the meds...as soon as I got off them and on to something else my seizures got better slowly." ~Sara Hydrocephalus, C-ACC, Chiari Type 1 & Epilepsy
|
|
|
Post by matthewsmom on Apr 12, 2011 18:32:03 GMT -5
Hello mom22inga, Welcome to the ACC message board. My son, Matthew, also has ACC and he was diagnosed when he was 4 months old. He is 17 years old now. I'm so sorry that your 5 year old son started having seizures this year. It must be incredibly frustrating to not see significant positive results from the seizure medication he is taking (Keppra) and to actually see his seizures and aggression getting worse. My heart goes out to you and I can understand your desire to seek the help of another pediatric neurologist. Because you wrote that your son's Neurologist told you that his seizures are in the temporal lobe, I assume that your son has had an EEG or more than one EEG that showed seizure activity? Is Keppra the only seizure medication that your son's Neurologist has tried, if I may ask? There is a very large ACC support group that I belong to called the ACC Listserv and the group has hundreds of parents from all over the world who have a child with ACC. There are also some adults with ACC involved in the ACC Listserv. There are a lot of parents on the ACC Listserv who have a child with ACC who take seizure medications. The topic of seizures and medications comes up often in the group. The input from other parents could be very helpful and I think you could even possibly find another parent in your area of South Georgia who could recommend a pediatric neurologist. Join the ACC Listserv support group: lists.maine.edu/cgi/wa?SUBED1=acc-l&A=1If you would rather not join the ACC Listserv but would still like the help, suggestions and input from other parents who have a child with ACC, who have seizures and are taking medication, I would be happy to post the note that you wrote here to the ACC Listserv (on your behalf--with your permission). Would you like me to post your note to the ACC Listserv for you? I can send you any replies received from other parents to your private messages or e-mail, if you like. Just let me know if you would like me to do this. My thoughts and my prayers are with you and your son. Sandie *Mom to 17 year old Matthew with ACC in Oregon* E-mail: hope@aracnet.com
|
|
|
Post by matthewsmom on Feb 21, 2011 13:33:25 GMT -5
Dear Hope's grandma, I responded yesterday to your note in the "Introduction - New Members" section of this Message Board. I have copied that response here for you to read, if you haven't already seen it. I am the Mom of a child who was born with ACC. His name is Matthew and he is 17 years old. I have received 11 replies (for you and your daughter) regarding breastfeeding challenges from Moms of kids who have ACC. The moms are in another ACC support group that I belong to called the ACC Listserv. The moms have replied with their own experiences with breastfeeding their baby with ACC, suggestions, advice, and some very helpful, insightful information. If you see this message, could you please e-mail me so I can send you all of these replies about ACC and breastfeeding, so you and your daughter can read them?Sandie E-mail: hope@aracnet.com P.S. Since I don't have an e-mail contact for you I am going to send the 11 replies from the Moms to your "private messages" here on this Message Board. To view your private messages: Log into the Message Board. At the top right hand side of your screen you will see: "Hey, hopesgrandma, you have ___ messages, ___ are new." Click on the "___ messages" and it will take you to your inbox so you can read all of your private messages. Please let me know if you have any questions or if I can be of any help. ------------------------------------------------------------------ Dear Hope's Grandma, Welcome to the Message Board. Congratulations on the birth of your very precious brand new granddaughter, Hope. I think it's wonderful that you are seeking information about ACC in an effort to support and help your daughter, her husband and your granddaughter. They are very lucky to have your caring support. I am the mom of a child who was born with agenesis of the corpus callosum. His name is Matthew. Receiving the diagnosis of ACC for your child/grandchild is a shock and it is also very overwhelming. I would be happy to share more information about ACC with you. At this time I want to address the specific questions and concern that you have regarding your precious granddaughter and her difficulty with breastfeeding and weight gain. This information comes from what I have learned as the parent of a child who has ACC and from talking with my child's doctors and specialists (and other parents who also have a child with ACC). It is not medical advice. Some babies who have ACC may have difficulty nursing. It could be due to many different problems. Some babies with ACC have low tone. They may have considerable difficulty being able to latch on, suck and swallow and coordinate everything. Some babies who have ACC struggle to nurse and may end up doing better drinking from a bottle. SOME babies who have ACC may have serious, significant feeding difficulties due to various problems, aspiration, failure to thrive, etc., and may need to be tube fed with an NG Tube (Nasogastric Tube) or a G-Tube. This does not mean that your granddaughter would need this type of intervention--only that sometimes some babies with ACC may. Each baby who has ACC is different regarding how they might be affected in terms of their feeding. Some babies/kids who have ACC may also have other possible medical problems, developmental problems and/or possibly be mentally and/or physically challenged. I am involved in another ACC support group and (because you have very specific questions and haven't yet had a reply here) I asked for input today from Moms in the ACC Listserv support group for you and your daughter regarding the breastfeeding challenges. I have already received a lot of replies from Moms for you. I am not able to post their notes directly on this message board in open without their written permission due to privacy issues. If you could please e-mail me, I would very much like to pass on all of the replies to you that I am receiving from other Moms in the ACC Listserv e-mail support group who have a child with ACC who are offering their personal experiences with breastfeeding so that you can read them. My name is Sandie. My E-mail is: hope@aracnet.comMy thoughts and my prayers are with your sweet granddaughter, Hope, her mommy and daddy and you. I look forward to getting in touch with you. Sandie *Mom to 17 year old Matthew with ACC in Oregon USA* ------------------------------------------------------------------------- Hope's grandma wrote: Hi, Thank you so much for creating this site. My granddaughter Hope Was born on February 3rd. She was diagnosed in utero and confirmed as having complete ACC the first day she was born. I am trying to learn as much as possible so I can help my daughter. I have a question for other parents: professionals are pressing my daughter to drop the breastfeeding and replace with bottle because they believe Hope is not gaining weight as fast as she should. True, she falls asleep after the first five minutes of breast feeding in just one side. My daughter is also pumping because she has been told to feed Hope no stop every 2 hours around the clock. Hope is her fourth child and she always breastfed the other three for at least 2 years each so it is difficult for my daughter to think she needs to stop breastfeeding. I have mixed feelings as well, knowing how important is breast feeding to the child and all the benefits of mother's milk. Did anyone have this issue with feeding your child when newborn? I mean, did you experience that it was hard to keep the baby awake and feed enough? Did your child had trouble gaining weight the first month? what did you do? Thanks so much. I am worried sick because my daughter and her husband are both disabled (they both have mild mental retardation and my daughter also has ataxia) and as such, the social work agencies are on top of them always mistrusting that they can be parents and now they are under the threat of losing Hope. Hope's grandma
|
|
|
Post by matthewsmom on Feb 9, 2011 23:12:03 GMT -5
Hi Leanna, Welcome to the Message Board. Thank you so much for posting a note on the board and for sharing a little bit about yourself. I am also from Oregon. I have a son who is 17 years old and he was born with ACC. He was diagnosed when he was four months old. I know of another adult who has ACC who also lives in Oregon. I invite you to consider joining the message board and becoming a member if you are comfortable with the idea. I hope that you will find support through the people on this message board and that you will find the information that is shared here to be valuable, helpful and informative. There are so many avenues to network and connect with other adults who have ACC as well as with parents of a child with ACC. The support is a blessing...and you yourself have so much to add and share with other people, too. Please let me know if you are interested in learning about the other ACC support groups and avenues to get in touch with adults who have ACC and parents of a child with ACC. I will be happy to pass that information on to you. In response to your other note regarding the low tone you experience and your high tolerance to pain...those are also experienced by some people who have ACC...my own child included. If you have any questions or would like information please let me know. I am happy to do my best to help. You can e-mail me: hope@aracnet.com or send me a private message (PM): accawareness.proboards.com/index.cgi?action=pmsend&to=matthewsmomIt may interest you to know that the owner of this ACCAA Message Board (Lynnea) is an adult who has ACC herself. In fact, she just graduated college last year. You can read Lynnea's personal story about ACC if interested at the link below: agenesiscorpuscallosum.blogspot.com/2009/06/meet-lynnea-adult-with-acc.htmlSandie *Mom to 17 year old Matthew with complete ACC* Hi! My name is Leanna and I am 24 years old with complete ACC. Maybe I was just naive, but I just recently discovered "it" has a name (ACC) and am really interested in doing research and meeting people that also have ACC. I was born with ACC, and have shook my head (back and forth, as if to say "no") since I was born, and over the years, as I've become more aware of it, I have been able to control it better. I have vision impairment (I wear glasses, and have an astigmatism), but other than that, I would consider myself "fully functioning" (I don't mean to hurt anyone by that term, it's just the only term I could think of to describe myself). I have always been teased and questioned about my head-shaking, so I am curious to find out if other ACCers also shake their head. The doctors didn't know much about ACC when I was "diagnosed", and I guess my parents were never super-forthcoming with information about it (possibly because I was so "normal", and maybe they didn't want to admit their daughter had a disorder). I had no idea how ACC affects others, and that there are so many more problems with it that are much more severe than mine. I'm wondering how I can get involved (volunteer) with ACC organizations and people. I'd love to know more about ACC, and like I said, I'd love to meet others that deal with it (ACCers, parents, guardians, etc.) Thanks, Leanna (Oregon)
|
|
|
Post by matthewsmom on Jan 6, 2011 18:06:28 GMT -5
Dear Lydia, I am the mom of a child who is completely missing his corpus callosum. He was diagnosed with ACC when he was four months old by a CT scan and then later had an MRI. My heart goes out to you with the recent news of ACC for your unborn baby that you received. It is shocking and overwhelming! I assume that you had a level II ultrasound done when the doctor informed you that they think your baby has ACC. Sometimes a fetal MRI is also done before a baby is born. Please know that a diagnosis of ACC cannot be 100% confirmed until after the baby is born and the baby has either a CT scan or an MRI. An MRI being the preferred method because an MRI is able to show a better picture of the brain (and can also show any other possible brain anomalies in addition to ACC). An MRI can also help to tell if the corpus callosum is completely missing, partially missing or thin (hypoplasia of the corpus callosum). I'm not sure if your baby's doctors have told you to wait and see and deal with anything that may come when it happens. Hopefully that is not the case because there are many things that can be done when a baby is born with ACC to help. There are some parents who are sent home from the hospital after their baby is diagnosed with ACC who are told to just wait and see and that time will tell and no further medical testing is done and the baby is not seen by medical specialists that are very important. One thing that you can do is to get your baby enrolled in an Early Intervention program if you live in the United States. A baby who has Agenesis of the Corpus Callosum will qualify for Early Intervention based on the diagnosis alone. Early Intervention will evaluate your baby and will provide physical therapy, occupational therapy, speech/feeding therapy and other therapies and services that your baby might need. Early Intervention is typically free and the therapists come into your home to work with the baby/child, depending on the state where you live. You can talk to your baby's pediatrician about getting the baby enrolled in Early Intervention. Many parents who have a baby/child with ACC highly recommend getting the baby enrolled in Early Intervention and therapies as early as possible to help ensure their development. I am one of those parents who highly recommends it and I enrolled my own baby, Matthew, as soon as he was diagnosed with ACC. For your information, below is a link to a list of medical tests and specialists that are very important when a baby is diagnosed with ACC: What Should I Do Next? scenicbeauty.tripod.com/WhatComesNext.htmlIn response to your question about NACD (National Association for Child Development) and places like the IAHP (Institute for Achievement of the Human Potential) as well as Glenn Doman and Brain Gym are mentioned by some parents who have a child with ACC. Some parents report success in using these types of programs with their child, others warn to be careful about seeking a miracle cure for your child and being charged thousands of dollars on a program for your child. There have been a number of parents in one of the ACC e-mail support groups that I belong to mentioning that they believe the Glenn Doman programs and Brain Gym are helpful. Activities, exercises and therapies that help to work on midline activities and crossing midline are mentioned to be helpful by parents who have a child with ACC and even by some adults who have ACC. There is still a 'wait and see' period that parents dread (myself included) when you have a baby who is born with ACC. The reason being that due to the large range of effects that the diagnosis of ACC has....there is no way to tell exactly how or if ACC will affect your baby. But you can definitely be doing something through Early Intervention programs and therapies, through the medical testing and taking your baby to see necessary specialists to rule out any other possible conditions or problems. Your fourth baby will also have a wonderful advantage with having three other siblings who will provide so much interaction and stimulation when he is born. The siblings will model and help encourage the baby to learn so many things and will provide a wonderful and loving natural 'therapy' environment. You can read ACC Pregnancy stories written by moms if interested at the link below: agenesiscorpuscallosum.blogspot.com/search/label/ACC%20and%20Moms-To-Be If you have ANY questions or concerns about anything please e-mail me anytime. I am happy to help you and share the information that I have learned about ACC while dealing with my own child's journey. My e-mail is: hope@aracnet.comMy thoughts and my prayers are with you and your family and your very precious baby #4 who will soon be born. Sandie *Mom to 17 year old Matthew with ACC in Oregon* I have 3 "normal" children already, ages 6,4,2. Baby #4 is due in a few months. At our ultrasound yesterday they informed us they think the baby has ACC. They could not find any other problems or deformities whatsoever though. So I've gone from "this is horrible" to "maybe he'll be mostly fine" to "looks like lots of kids like this have issues to deal with." I don't like the "wait and see" mentality. I want to know what I can do to prepare for this, if indeed he has ACC. I understand that they would do an ultrasound and/or MRI of the baby's brain after he's born, to confirm what exactly is there or not there. I don't want to have the baby be born and then just wait to see how ACC affects him, and then do therapy for that - as in, can a person do pre-emptive home therapy or whatever to help the baby develop as well as possible after birth? Has anyone had experience with NACD or IAHP (Glenn Doman)? I have most of the Doman books (for other reasons) including his "brain injured child" one. I would like to know what people have done (if anything) before their child has exhibited developmental problems. Or what I should know ahead of time to expect. I've read lots of people's stories online, and I realize every story is different and there are different issues with each. I just don't want to wait around after he's born if there's something I can do to help development along. Thanks for whatever feedback you can give me! Lydia
|
|
|
Post by matthewsmom on Jan 6, 2011 16:54:27 GMT -5
Dear Yasmin, My son, Matthew, was diagnosed with agenesis of the corpus callosum when he was four months old. I still remember the day he was diagnosed as if it was yesterday even though 17 years have gone by. It is overwhelming and that is putting it mildly. My heart goes out to you with the worry you are going through after having received the news of ACC from your child, Malachy's, recent CT scan. My son was diagnosed with ACC by a CT scan when he was four months old. An MRI is able to give a much more detailed picture of the brain and my son had an MRI (much later) after his CT scan. I can absolutely understand your feelings of wishing that the CT scan wasn't ever done. There are actually a lot of kids and adults who have ACC (who are developing very well) who find out the very same way that you are finding out with Malachy. Some kids end up at the Emergency Room after having hit their head and it shows up on the CT scan or MRI and the doctors are amazed that the child is functioning 'normally'. Some adults go in for an MRI due to migraines or for sinus surgery, etc and that is how they find out they have ACC. It is wonderful that Malachy is developing on a typical timeline and meeting milestones. He's doing midline activities and using his hands together at midline, crawling, pulling to stand, saying words and more. That is very, very encouraging. There is a very broad range of effects for agenesis of the corpus callosum, ranging from mild learning disabilities to being profoundly physically and mentally challenged and anywhere in between. Please know that there are a lot of kids who have ACC who do very well. They may be a little slow on meeting some of their milestones (or may not). A lot of kids who have ACC need some help in school (resource room or special education) but do attend mainstream classes. The website below will explain in more detail about ACC from the beginning and includes support groups, family web pages and other information. Agenesis of the Corpus Callosum-Angels Around The World: scenicbeauty.tripod.com/AngelsAroundTheWorld.htmlIf you have any questions or would like to talk more, please e-mail me anytime: Sandie e-mail: hope@aracnet.com or you can leave a message here on the board. I am happy to help and please feel free to e-mail me as often you want with any questions that come to mind or anything that is on your mind. Sandie *Mom to 17 year old Matthew with ACC in Oregon* Hi everyone, My name is Yasmin I have a 14month old little boy called Malachy. I stumbled across this message board whilst researching agensis of the corpus callosum. Malachy recently had a CT scan in the hospital because he bumped his head and it was more of a do it 'just incase' scenario. I wasn't expecting the outcome which was the doctor saying that he would have to have a MRI scan at a later date, the words that followed were alien to me and everything was such a blur but I remember her saying that it was something to do with the corpus callosum my mum remembers her saying it was something about the shape of his CC but then in the morning the doc said they couldn't see the connection between the left and right hemispheres of the brain. They did make a point of saying that there was no certainty in this as the CT scan is not the correct scan to diagnose this and to wait till he had a MRI. This will be next week. Malachy seems to of developed absolutely fine he has been sitting up un-aided since 8 months, rolling round like a lunatic since around that age to. He began Crawling at 11months and in the past month has learnt to pull himself up and stand (leaning on to something). He is also began talking at 8months, first word Dada! (why do they also say dada first!) he can now say a handful of words dada, mama, dog, whats that?, hiya. He waves bye bye, blows kisses, claps hands, dances when music is on. in the past couple of days he has managed to climb onto the sofa. Any advice or reassurance from people who know more about this would be so appreciated. I am out my mind with worry and am now wishing he would never had the CT scan. Please please give me your thoughts, regards, Yasmin xx
|
|
|
Post by matthewsmom on Oct 14, 2010 22:15:41 GMT -5
Sara's Story - An Adult with ACCagenesiscorpuscallosum.blogspot.com/2010/10/saras-story-adult-with-acc.htmlSara has posted notes in a couple of the ACC support groups that I belong to but I didn't know her very well......until Sara recently left a comment on the "Autism and ACC" blog post. That comment from Sara sparked some e-mails between us and I asked Sara if she would consider sharing her own ACC Story. Well, she not only replied with a yes...but she wrote her story and sent it to me the next day! It is a privilege to be able to include Sara's ACC Story on the blog and I am really excited that she is willing to share her story with other people. Sara is even willing to answer any of your questions. So, if you read her story and want to ask Sara a question...go ahead. Thank you. Sandie *Mom to 17 year old Matthew with ACC in Oregon USA*
|
|
|
Post by matthewsmom on Sept 21, 2010 21:07:58 GMT -5
ARE YOU PREGNANT AND JUST FOUND OUT YOUR BABY HAS AGENESIS OF THE CORPUS CALLOSUM? If you are pregnant and just found out that your baby has Agenesis of the Corpus Callosum (ACC) there are so many questions on the part of the new Moms and Daddies too, not to mention fears, worries, tests and overwhelming emotions that go along with receiving this news while you are carrying a precious little life inside of you. It can be an extremely difficult and fragile time emotionally. And on top of all of that you might only hear a very clinical explanation of ACC from the medical doctors. It is very apparent that there are a lot more Moms-To-Be who are being told that their baby (in utero) has ACC. I see it in the ACC support groups I belong to, in online forums that I read and from e-mails that I receive from pregnant Moms. I really wanted to create a section on the ACC Blog that deals with this delicate topic to help balance the clinical view and give a more personal view about ACC from Moms (and Dads) who have been there, who have a child with ACC and who understand. And thanks to Moms who are willing to share their own personal ACC pregnancy stories in the open with others, you are able to read all about each ACC pregnancy story and you can also see pictures of their very precious babies and kids who have ACC. ACC & Moms-To-Be Stories:agenesiscorpuscallosum.blogspot.com/search/label/ACC%20and%20Moms-To-BeI am SO grateful to each and every Mom who has shared her ACC pregnancy story in an effort to reach out and help other people. If you would like to reach out to other Moms-To-Be and share your own experience, your feelings and your own ACC and Moms-To-Be story please let me know...I would love to hear from you and it would be a privilege to include your story. My name is Sandie and you can send me an e-mail: hope@aracnet.comSandie *Mom to 16 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Sept 13, 2010 1:02:57 GMT -5
For those of you who have a child with ACC who struggles with handwriting you may be interested in reading the recent ACC blog post regarding Handwriting Help. It talks about a couple of different teaching tools that many parents who have a child with ACC have mentioned that have helped their child with handwriting. If interested, you can view the Handwriting Help blog post at the link below: Handwriting HelpSunday, September 12, 2010 agenesiscorpuscallosum.blogspot.com/2010/09/handwriting-help.htmlIf your child has used either one of the particular handwriting tools that are described in detail on the blog post at the link above, it would be so wonderful to get your input regarding you and your child's experience using them whether good or not so good. And if you have not yet used the teaching tools to help promote handwriting with your child but decide to give one or both of them a try, it would also be great to receive input from you regarding what you and your child who has ACC think about them. Thank you very much. Sandie *Mom to 16 year old Matthew with complete ACC in Oregon USA*
|
|
|
Post by matthewsmom on Aug 24, 2010 14:55:15 GMT -5
Hi sscornell86, Welcome!! :) I am not from Northwest Ohio. But I am the mom of a boy who is 16 years old and he has complete ACC. As another avenue to help get you in touch with other parents who have a child with ACC in your area I would like to suggest trying the ACC Listserv e-mail support group. That particular group is one of the largest, having hundreds of people from all over the world. There are many parents of a child with ACC, adults with ACC, grandparents and family members and others interested in learning more about ACC. If you post your to note the ACC Listserv, I think you would have a greater chance of locating other parents in your area. Also, you will more than likely find some connection with other parents who can relate to your situation even though they may not live in your area. If interested in the ACC Listserv you can find information for how to join at the link below: Join the ACC Listserv e-mail support group: lists.maine.edu/cgi/wa?SUBED1=acc-l&A=1If I can help please feel free to e-mail me: hope@aracnet.comor send me a (private message) PM anytime. Sandie *Mom to 16 year old Matthew with ACC in Oregon* Is there anyone on here that is from Northwest Ohio? I am curious if there is someone in my area that has a child with ACC. My son is 18 years old but does quite well. Just wanted to check some comparisons with other parents about their children.
|
|
|
Post by matthewsmom on Aug 9, 2010 23:06:15 GMT -5
Erin, You're welcome for the information. If you have any questions, just ask. It sounds like you have your hands very full. I hope that things will go well for you with respect to your baby girl's ACC. Sandie
|
|
|
Post by matthewsmom on Aug 7, 2010 22:44:01 GMT -5
Dear Kerina313 aka (Erin), Welcome to the ACCAA message board. Thank you for the things that you shared about your twins (one of whom has ACC) and your other kids. I am so glad to hear that your 4 year old daughter is doing very well despite having to endure such extensive medical conditions and surgeries. God bless your angel baby who had Trisomy 18 who is in heaven. As a mom myself of a child who has agenesis of the corpus callosum I can very much relate to what you wrote about how you don't do well with the "wait and see" aspect of ACC. THAT was one of the most difficult things for me to deal with after my son, Matthew, was diagnosed with ACC at four months old. I am curious if the doctors who diagnosed your baby girl with ACC simply diagnosed and then left you with a "wait and see" about everything or if the doctors told you about necessary doctors and specialists that she should see for important medical tests after the diagnosis of ACC if I may ask? I only mention this because some parents are not given much more information other than just wait and see with no further testing or specialists or they are given the worst case scenario of what to expect for their child. I am also wondering how the doctors knew that your baby girl has ACC and if an MRI or CT scan was done after she was born? An MRI will give the most detail and best picture of the brain and can pick up any other possible brain anomalies that may exist in addition to ACC. It can also see if the corpus callosum is completely missing, partially missing or thin (hypoplasia of the corpus callosum). Although, as many parents have said in some of the ACC support groups that I belong to...getting the right answer to what type of corpus callosum disorder your child has depends upon who is reading the MRI report. Just in case you were not given medical information about ACC and testing that is particularly important I am including a link that will list specialists and testing that should be done: Tests and Specialists After the Diagnosis of ACC: scenicbeauty.tripod.com/WhatComesNext.htmlOne of the specialists that a baby/child should see after being diagnosed with ACC is a good pediatric opthalmologist to rule out any possible optic nerve problems and/or medical conditions involving their eyes. I have listed all of the other specialists at the link above. Are you aware of Early Intervention? When you live in the United States your daughter will qualify for Early Intervention services based solely on her diagnosis of ACC. You will receive therapy services for her (usually in your home) for free from birth to age 3. It is best, like you said, to be proactive when it comes to a child who has ACC and the earlier you start them in Early Intervention services the better...to help make connections and facilitate their learning process in meeting milestones. You can receive physical therapy, occupational therapy, speech and feeding therapies and other therapies through Early Intervention. I highly recommend utilizing Early Intervention services as soon as possible as a proactive measure to ensure your baby's development. I see that you live in Pennsylvania. The link below has information about Early Intervention in your state: www.pattan.net/files/EI/EarlyInt-guide-OUT.pdfAsk for a referral from your pediatrician for Early Intervention services or you can contact Early Intervention in your county yourself to begin the evaluation process. Some babies/kids who have ACC can have sensory issues and may be bothered and upset easily by loud or certain noises. That is one thing that comes to mind when you mention that she is fussy, cries a lot and is hard to comfort. But, with the mention of her having a seizure after becoming so upset I would want to have additional expert opinions from doctors. I assume that you were told that when a child/person has ACC they are at a higher risk for having a seizure or seizure disorder due to the corpus callosum being missing. Has your baby been seen by a neurologist or is she on any seizure medication if I may ask? Has she ever had an EEG? I would highly recommend that you consider joining the ACC Listserv e-mail support group and post your note there to the group of people. There are hundreds of people on the ACC Listserv who can offer a lot of advice, support, help, suggestions and knowledge. Many of the people are parents of a child with ACC, some are adults with ACC, others are family members of someone who has ACC. Or, I would be happy to post your note to the ACC Listserv for you and then send you any replies from other parents for you to read. Just let me know if you would like me to post the note that you posted here to the ACC Listserv on your behalf and I will do it right away. If you would like to join the ACC Listerv yourself you can sign up by going to the link below: ACC Listserv e-mail support group: lists.maine.edu/cgi/wa?SUBED1=acc-l&A=1Even after further medical testing and specialists appointments to rule out other possible problems that are sometimes seen along with ACC, the "wait and see" period is something that every parent struggles with because there is just no way to predict how or if ACC will affect a person since the range of effects for ACC is so broad. If you have any questions or if you would like more information about ACC please feel free to e-mail me anytime. hope@aracnet.comThe website below will explain and give more detailed information about ACC: Angels Around the World-Agenesis of the Corpus Callosum:scenicbeauty.tripod.com/AngelsAroundTheWorld.htmlSandie *Mom to 16 year old Matthew with complete ACC in Oregon*
|
|