|
Post by matthewsmom on Aug 30, 2009 20:42:08 GMT -5
"Ewwwwwwww" is right!
My child, Matthew, also suffers from constipation!! He has chronic constipation, has had it since he was a baby and has gone through various degrees of it over the years.
When he was a little baby and toddler on up through a few years old I was able to semi-control it by feeding him baby food prunes. He did not (and still does not) like water and it was difficult to get him to drink water. When Matthew was in grade school his difficulty with constipation got to the point where I wasn't able to help him with natural remedies anymore. We even went to a reflexologist to help him get some relief. That was expensive and while it usually did help, it was not affordable at all. From the time Matthew was first diagnosed with ACC he has been seen by a developmental team and a developmental pediatrician who assess him and perform a developmental evaluation. One of the things they always ask me about are his bowel movements.
Finally, I gave up trying to go the natural route to alleviate constipation (because I had a child in agony with tears from the pain of constipation) and Matthew is a child who rarely ever cries so when he does cry I know something is terribly wrong and he hurts bad. His developmental pediatrician recommended using Miralax. He also told me that it is difficult to figure out the exact right dosage (and it most definitely is). I still use Miralax for Matthew but even with using that he doesn't have a BM every day or even every other day.
Sometimes he still goes days without a BM and sometimes he has *whispers* several very loose, icky BMs in one day. I have nearly gone mad trying to come up with what will work and how much of WHAT? will work and why he has a hard BM one day and then 2 or 3 messy BMs four days later. I have even kept a little calendar the past couple years (noting what he took and his BMs in detail) trying to make sense of it all but I have to tell you...
I throw my hands in the air and I can't figure it out!!
We have even had Matthew seen by a dietician at the developmental children's clinic where he has gone for years and we were educated by the specialists with much information about adding certain foods to the diet to help with constipation...soluable and insoluable fiber and extra water but with Matthew's inability to eat or tolerate many table foods and his need for pureed-like consistency with foods coupled with his mega huge dislike of water...I am hitting a brick wall everywhere I turn it feels like sometimes. I actually did make Matthew for a few weeks (after this appointment) drink, drink and DRINK a lot of water. All it did was make him have a sloshy full of water tummy that you could hear sloshing when he moved. It didn't even help the constipation.
I actually have an upcoming yearly check-up for Matthew with his pediatrician and CONSTIPATION is on my list of things to discuss with her so we can get some possible additional insight into WHAT we can use to help Matthew have an easier time doing what should come naturally but just does NOT (and never has) for him like so many kids and adults who have ACC.
After Matthew's Doctor recommended Miralax at our developmental eval appointment, I asked Matthew's developmental pediatrician how long Matthew would need to take Miralax (cuz I didn't want him taking medicine/laxatives like that too long) the Doctor told me...probably for the rest of his life.
I thought...uhhh...HUH? (not the answer I wanted to hear) It was explained to me (if I can remember correctly) that when kids have neurological issues it can affect their digestive tract and bowels and cause the digestive tract to be sluggish and slow (according to the signals from the brain). Sort of like how some kids with ACC have low tone due to the messages/signals that the brain sends out.
I have to admit that when I read this:
I wonder if anyone knows why?the 2 things seem to be so far apart?""
I took it very literally and it gave me a little chuckle. lol
Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Aug 29, 2009 18:02:38 GMT -5
Araceli, You're welcome and please know that I am continuing to pray for Brianna and your family. I am very thankful to God for allowing our paths to cross and to meet you. I hope to meet you in person one day. Being as the 2010 Conference will be held in Santa Clara, California...it would be wonderful if we both are able to attend. I appreciate your mention of keeping me/us (on the forum) updated about Brianna. She is just so precious and sweet and no child should endure all that she has gone through. Most adults have not experienced anything close to what your sweet baby girl has gone through in the first two years of her life. Brianna is tough and strong...just like her Mommy. Honestly, you have already gone through more than I did when Matthew was a baby and a little guy. I can relate to what you wrote about how much it hurts when you are finally able to focus on development, on rays of sunshine, on progress and you see and witness your baby doing something for the first time that you were dreaming would happen but weren't sure it truly would only to have the rug pulled out from under your feet and the euphoric feeling snatched away and replaced with darkness. I had times when I would be happy and smile again finally after having so much gloom but amidst the joy I had an underlying feeling of fearing or expecting something bad was just around the corner. It was awful. When Matthew was little he had SO MANY doctor appointments, several surgeries and several seizures. The seizures were very scary and caused him to turn bluish on his lips, go pale greyish in color and he would barely breathe. I had to call 911, hold him in my arms, talk to him, listen to the 911 clerk, pray, feel frantic, pray, wonder when the ambulance would come...cuz it couldn't get there fast enough when you have a baby in your arms who is like a noodle and won't wake up for anything and is having breathing issues. To this day if Matthew so much as does anything unusual like lies over suddenly on his side as if sleeping on the floor in the middle of the day and is quiet...I jump and run to him YELLING out his name...wondering if something horrible happened and have flashbacks of how it was when he was a little guy. You, however, have gone through a million times more than I. It is definitely VERY hard to picture or focus on and think about the wonderful and positive accomplishments and things your child learned to do when those accomplishments and joys happen one minute in all their brilliant smiles and celebrating glory and (it feels like) the next minute the dooming cloud of darkness is robbing you and stamping out the joy. Brianna has learned so many new things...try your best to hold on to those wonderful, positive pictures and know that she is a child of God and He knows her so well. He sees the bigger picture and we must trust Him in ALL things. *hugs* *continued prayers for Brianna* Sandie
|
|
|
Post by matthewsmom on Aug 29, 2009 1:53:29 GMT -5
Agenesis of the Corpus Callosum: Social Skills & Challengesagenesiscorpuscallosum.blogspot.com/2009/08/agenesis-of-corpus-callosum-social.htmlThis document was written with the helpful input of many parents who have a child with ACC and with information provided from research on the corpus callosum and ACC. It was created in an effort to bring greater awareness of Agenesis of the Corpus Callosum and to help schools, teachers and educators as well as other people understand more clearly the social issues and challenges that children who have ACC struggle with. If you would like to receive a hard copy of the Social Skills & Challenges document please send an E-Mail to: hope@aracnet.com
|
|
|
Post by matthewsmom on Aug 29, 2009 1:30:40 GMT -5
Please use this thread to discuss the topic of ACC and Social Skills, social issues and/or challenges.
|
|
|
Post by matthewsmom on Aug 27, 2009 16:59:54 GMT -5
Araceli, Angel & Hailey...
I said a prayer for Brianna before I even finished reading your prayer request. I am continuing to pray for Brianna and your family.
you wrote:
"Please pray that the surgery for her tonsil and adenoid removal will be enough to open her airways enough that she will not need a trach please..."
I will stand in agreement with you, Angel and Hailey and ask God to allow Brianna's surgery to open her airway so that she will breathe freely with no trach.
"Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them."
-Matthew 18:19-20
My heart goes out to you...there is so much going on and so many things to deal with. You ARE a strong Mommy....and it's ok for you to let it out and give it to God.
I will be praying for you and Angel...asking God to comfort you and give you guidance, wisdom and peace.
His hand is in all of this and He loves and watches over Brianna.
My prayer is for you to trust God and surrender your fears to Him. He will see you through this each and every step of the way. *hugs*
*continuing to send up prayers for your little sweetie pie*
Sandie
|
|
|
Post by matthewsmom on Aug 26, 2009 2:56:29 GMT -5
Ohhhhh..... she is Super Duper cute standing up with that smile on her face!!! I LOVE IT!! Thanks so much for sharing Brianna's newest accomplishment and adorable visual. scoop that little cutie up and give her a from me and Matthew please. Sandie *Matthew's Mom*
|
|
|
Post by matthewsmom on Aug 25, 2009 0:38:38 GMT -5
Araceli... WOW! I am so so SO super happy to read that Brianna learned to walk using a toy cart push walker!! You must be THRILLED!!!! I can't wait to see a pic of Brianna with her walker... Isn't it fun when you get to cheer them on as you watch them learning to do new things that you weren't ever sure they would do or learn...? Just a little while ago she started crawling and look at her now...up and about exploring her newfound freedom takin' steps and pushin' her toycart while Mommy cheers her on. Way to go, Brianna...and I'm cheering her on for even bigger steps. Love, Matthew's Mommy
|
|
|
Post by matthewsmom on Aug 22, 2009 14:43:02 GMT -5
acmunchkin & Ky, THAT is wonderful, super exciting and fantastic news!!! It's so exciting when our kids learn something new. It's a definite cause for celebration. Ky is a cutie. Thank you for sharing that great visual so we get to see Ky and celebrate with you. I am SO happy for you and Ky that he is up and about walking with his "boogie shoes".
|
|
|
Post by matthewsmom on Aug 21, 2009 23:55:07 GMT -5
Please use this thread to post things that your baby or child learned to do that puts a BIG smile on your face...
|
|
|
Post by matthewsmom on Aug 21, 2009 23:31:03 GMT -5
|
|
|
Post by matthewsmom on Aug 21, 2009 23:14:12 GMT -5
grandmarosie, You're welcome. I'm sure it is not easy to feel your way around right now with your son and daughter-in-law with respect to suggestions from you. I truly believe that having your support right now and being there for them is something that will be a blessing to them. There is such an overwhelming amount of emotions to sort through and deal with on top of taking care of a brand new baby. I assume that when you wrote "EIP" you are referring to the Early Intervention Program" ? Early Intervention is set up within the US for babies/children who have developmental disabilities so that they can receive therapy related services for free. Once a baby/child qualifies (ACC is a diagnosis that usually qualifies easily) then they can receive physical therapy, occupational therapy, speech therapy and other necessary therapy services. Your grandson's pediatrician can refer him to Early Intervention in your area so that the qualification process can begin (if the doctor hasn't already done so). You can also do a google search for Early Intervention in your home state and the county that you live in for more information. I highly recommend always asking for a copy of the medical report at each doctor appointment. I had each doctor's office mail me a copy of the medical report and I kept them all together. It helped me because in the beginning Matthew was seeing numerous specialists, had A LOT of doctor appointments, was having several tests and my head was spinning. It is too hard to remember everything you are being told by every doctor at each and every doctor appointment. Much much easier to request copies of the medical reports and then you have the advantage of reading them over at your convenience. I often times found more information within the medical report that wasn't told to me at the actual appointment. The medical reports help you stay informed and keep track of everything going on with your baby's medical needs and also provide at your fingertips information to copy and take with you to any doctor appointments that you feel may need the information. Sandie *Mom to 15 year old Matthew with complete ACC* P.S. Please know that you are welcome to post or reply to any messages in the ACC Parents section if you like. Please feel free to do so anytime.
|
|
|
Post by matthewsmom on Aug 19, 2009 23:57:05 GMT -5
Lynnea, I just watched the new ACC Kids Video and it's beautiful. Sandie
|
|
|
Post by matthewsmom on Aug 19, 2009 23:54:41 GMT -5
Dear Grandmarosie, Welcome to the ACC Message Board. Congratulations on your brand new grandson who was just born a few days ago. Babies are such a gift and blessing. I'm so glad that you found your way here and that you were able to release those tears through the outpouring of your concerns and feelings that you shared here. One of the first things I wanted to know was HOW would this affect my baby? I had a million questions when my baby boy, Matthew, was diagnosed at four months old with complete ACC. Then on top of the diagnosis I was told by one doctor after another doctor and specialist an all too familiar phrase that I did NOT want to hear...we don't know how it will affect your child and there is no way to tell. Even so, I continued to wrestle with the multitude of questions that swirled through my mind like a tape recorded message that keeps playing over and over. you wrote: "Please let me know what we all can expect or when we can expect certain symptoms to appear."
"How soon after birth do certain symptoms show up?" Unfortunately, there is just no time frame or expectations for when symptoms will appear as a result of having ACC. That is not an easy fact to swallow or deal with. I struggled with it A LOT! I think every parent who has a child diagnosed with ACC struggles with the not knowing what to expect factor or when to expect 'IT'...knowing there is the possibility of IT showing up right around the corner. There is also the possibility though that IT may not even show up. Because ACC has a very broad range of how it may affect an individual there is no known prognosis for what to expect. Each person diagnosed with ACC is different in terms of how it may affect them. It is believed that when a person has isolated ACC (meaning that ACC is the only diagnosis) they have a better chance of being able to function on a high level. ACC can also be seen along with other medical problems such as genetic syndromes, chromosome anomalies, seizures, optic nerve conditions and other eye problems, midline defects, growth problems, metabolic disorders, etc. I'm so glad to see that your son and daughter-in-law have an appointment for their baby to be seen by a pediatric ophthalmologist. That is one of the first things that I was told by my child's doctors and Matthew was seen immediately to rule out optic nerve conditions and other eye issues. I feel that when a baby is diagnosed with ACC they should be enrolled in an Early Intervention program and begin receiving therapy services to help with their development as opposed to waiting until they fall behind on their milestones. My child's pediatric Neurologist told me that through the use of therapies the brain is sometimes able to make other connections on a deeper level even though the main, largest communication pathway between the two hemispheres of the brain (the corpus callosum) is missing. The Doctor said it is not yet understood...HOW it happens but that it is sometimes possible. It was possible in my own child's case and in many other children who have ACC as well. Some parents say that their baby wasn't able to breastfeed and they needed to switch to bottle feedings. Some parents even say that their baby with ACC struggled to bottle feed. It's so great that your grandson is "eating like a champ" It's so normal that you, your son and his wife all have your own way of dealing with the diagnosis of ACC. I think that together, the three of you as a team, will get through each stepping stone...one pebble at a time...and find support in each other as well as through others along the way. I can understand your anxious feeling at the thought of being your grandson's caregiver and being unsure what to look for. I think though that when you snuggle that little bundle of sweetness in your arms and let the grandmotherly affections flow...you will relax and give that to God trusting that He will give you wisdom and reveal whatever it is that you need to know. Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Aug 18, 2009 16:13:45 GMT -5
TO: Ambercitrine...(Karen)....Lynnea's Mom... Have a WONDERFUL Birthday full of all the things you love the most. I hope that you and your lovely daughter, Lynnea, both enjoy celebrating your special day. Sandie *Mom to 15 year old Matthew with complete ACC*
|
|
|
Post by matthewsmom on Aug 18, 2009 1:36:25 GMT -5
TO: msp123, Babies bring so much joy and blessings into our life. Congratulations msp123 on your beautiful, little blessing...your brand new baby boy!! We would love to hear more about him if you feel like sharing. Sandie *Mom to 15 year old Matthew with complete ACC*
|
|