New Grandson

[grandmarosie]

I grandson was born August 14, 2009, so is just a few days old. He has c-ACC. Something wrong was first noticed in an ultra-sound late in the pregnancy of my daughter-in-law (DIL). An MRI was done the day he was born after with c-ACC was confirmed. At this time everything looks great. His AP GAR was 8.9. He is already trying to hold his head up and he has good muscle tone in his arms and legs. He is also eating like a champ. My question is this. How soon after birth do certain symptoms show up? I was a blog in another site where her child started having trouble swallowing on the 13th day.

The pediatrician did tell them to watch the milestones. They have two daughters, ages almost 3 and almost 5, so have experience on the "normal" time-line of developments so should be able to tell if he is slower at meeting these goals.

My DIL looked everywhere on the internet so know much more about c-ACC than I do. She hasn't told my son most of what could be coming. I do agree with his attitude a little. His view is "it-is-what-it-is." If something comes up we will deal with it.
I am going to be his caregiver during the day when his mom goes back to work. I guess I'm a little anxious about missing something important or not doing things correctly. I do know his parents have been told to do a lot of things to keep good motor skills with exercise mats with the mobiles, etc. Try to get him to reach for toys and exercise his arms and legs.

His parents are bring him to a pediatric ophthalmologist so they have a base for any future eye visits. They will also bring him early for a head measurement, etc.
I am on disability with fibromyalgia and chronic fatigue syndrome so am worried about my ability to keep up with all the things that might be needed. At this point I am putting my faith in the Lord that he will make all things possible for me to do was is necessary.

Please let me know what we all can expect or when we can expect certain symptoms to appear.

Thank you for this forum. I haven't cried about this until I started writing here and would prefer not to do it in front of my son and
and DIL.

[hannahsmom]

Hello Grandmarosie.
My daughter had low muscle tone and a very large head (hydrocephalus), so she had trouble learning to roll over, sit up, crawl, walk, color, button, etc. She had physical therapy twice weekly from about 6 months of age to 3 years old to help her learn these things. She achieved her goals 3 - 12 months late. But she's 7 now and can walk, run, and hop fine. She's just now able to button her pants. She still doesn't like to color with crayons.
Everyone is different, though, so be patient and watch. Your grandchild might have different issues & timeframes.
My daughter was delayed in learning how to talk. She had a speech therapist from age 1 to 5. However, now she has a great vocabulary, speaks clearly, and spells very well.
My daughter was also a bit antisocial for her first couple years. To help counteract this, I would hold her on my lap for all feedings. I'm not sure if that's what changed her or if that was just her personality then. She's very cuddly now.
I played classical music in her bedroom constantly when she was little. Music can be helpful in stimulating the brain and I saw no downside to trying it. She loves music.
Enjoy the baby!
Leanne (Hannahsmom)

[matthewsmom]

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*

[grandmarosie]

Sandi, thank you for your advise. At this point I don't know yet how well my daughter-in-law and son will accept suggestions from me. Such as seeing the pediatric neurologist. How do you find an EIP? I did call yesterday and told my DIL that I read somewhere that you should get a copy of each and every appointment from each Dr so they have complete details when they go to one dr. and the other. At this point the pediatrician is keeping a close eye on the size of his head each week.

Again, thank you for the information and understanding of my anxiety.

GrandmaRosie *Grandma to Bailey 4, Brynn 2, and Blake 2 wks with complete ACC*

[matthewsmom]

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.