Mom to 3 month old with ACC

[kerina313]

I'm a mother to a 3 month old girl that was diagnosed at birth with ACC. We basically were told to "wait and see" at the time of her birth.

Other than a few things - like having to hit both sides of her mouth a couple of times before sucking and running her face against the floor when on her tummy and upset. She seems pretty normal.

She and her twin brother both started rolling at 1 month old and both love to sleep on their stomachs. He loves music and appears to really watch your mouth and is starting to vocalize. She is just fussy. If you start to sing, she starts screaming. She is also very hard to "comfort".

I'm not a novice when it comes to children with "difficulties". My first daughter is a VATER/VACTREL child. She has 3 major birth defects - heart, kidney & spine. We've already gone through 2 open heart surgeries and lots of early intervention. She is now 4 and other than her curve and scar - you'd never know she was any "different".

My second daughter died 2 days after being born due to complications of Trisomy 18.

I wouldn't be concerned with my ACC child, except the other night she was so upset she actually went into a seizure.

I'm just wondering from any adults that have this condition or even any parents with children that have ACC, did anything like this ever happen?

I'm very much a proactive Mom and like to have as much information (good or bad) up front. I really don't do well with "wait and see".

So with my 3 month old --- if you have suggestions to help her -- I'm all ears.

[matthewsmom]

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.html

One 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.pdf

Ask 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=1

Even 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. [e-mail]

The website below will explain and give more detailed information about ACC:

Angels Around the World-Agenesis of the Corpus Callosum:
scenicbeauty.tripod.com/AngelsAroundTheWorld.html

Sandie *Mom to 16 year old Matthew with complete ACC in Oregon*

[kerina313]

Thanks for all the information. We're pretty familiar with Early Intervention - as DD#1 had their services. We know for certain that she has complete ACC - they did a MRI about 4 days after her birth. The hospital that did it, we've decided not to stay with them, our DD#1 cardiologist at Children's gave us a name of someone at Children's to see.

I'm the parent that works and it's been kind of hard to get things into place - it probably would have been a lot easier had she been a singleton. I'm hoping after this next week (last week of training) I'll be able to get things in motion.

As far as her seizure, she's only had the one and I plan on letting her doctor know about it. In her case, she cried herself into it and hasn't had any since. We'll also let the Neurologist at Children's when we get there know this happened.

I appreciate all of the information.

[matthewsmom]

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