Meet

Danica Deneault

Danica was diagnosed with AS when she was 5 weeks old. We knew during pregnancy that she had a cyst and enlarged ventricles, and at birth she had an MRI which also showed that she had agenesis corpus callosum, hydrocephalus, and another cyst lower in her brain. We were told when we brought her home that there was a high risk of her having seizures, so at 5 weeks old when we noticed abnormal behavior we brought her to the children’s hospital they admitted her and did extensive testing to determine in fact that she did have AS. We were sent home and told to come back in two days for an appointment with the doctors because they weren’t very familiar with AS and wanted to discuss all the test findings with other neurologist. When we got home we were so exhausted from the hospital stay that myself nor my husband researched AS at all, so when we went to the follow up appointment we had no clue what we were in for. There the doctors confirmed that yes Danica was being diagnosed with AS. They handed us a pile of research they got from books and online with a few lines highlighted. We broke down after reading the highlighted lines which informed us that our little girl was fighting a syndrome that had such horrible affects. Nothing could have ever prepared us for such heart breaking news. We decided that we would go anywhere and do anything to make sure our little girl lived a happy life, no matter how long or short it was going to be. From that moment we did everything in our power to help her with development and spasm control.
Danica is currently on Phenobarbital, Topamax, Vigabatrin and the ketogenic diet. We are so happy to report that since she has started the Vigabatrin on March 3rd she has been spasm free!! That’s 3 months of freedom for our little girl. We are currently in the process of weening off the phenobarb in hopes to increase her fine motor skills and muscle tone. In these past 3 months since she has been spasm free she has learned how to sit unassisted, stand(with assistance), feed herself with a spoon and she is rolling all over the place!! She has so much energy and is such a happy little girl everyday all day!!
Danica has a long road and we have no clue where its going to take her, but then again do any of us really know where life will take us… this little angel was given to us as a gift from god and although she is only a year old she has taught everyone who comes to know her that all the hustle and chaos of everyday living means nothing, its the little things we all take for granted that really matter!!

Update December 2010:
Danica was weened off Phenobarb and the ketogenic diet over the summer and is still dong fabulous!! She is still on topamax and Vigabatrin twice daily.She is still having seizures/spasms here and there, but almost always its because something is off with her body, wether its a fever, cold, or even just constipation. When she does have an episode it is usually right when she wakes up and is very quick about 30-45 seconds. They don’t seem to affect her at all, she recovers very quickly and proceeds with the rest of her day as normal. Her development has picked up tremendously since she has been off the Phenobarb. She is currently rolling over, getting from lay to sit, and sit to lay. She is pulling herself up onto her knees and will go from knees to standing if holding someone’s fingers. She is a little speed demon in her walker and loves to hold your fingers to walk around. She will get herself up into crawling position but still hasn’t figured out how to move forward. One of her biggest challenges has been the chew and swallow coordination, she is good at chewing things up but then spits them out, cause she isn’t sure what to do with it. Feeding time has been pretty sloppy these days!! We have posted lots of videos of Danica on You Tube so feel free to check them out just search by her name or Aicardi Syndrome. We are so proud of our little girl and all her accomplishments!!

UPDATE May 2011:
Danica just celebrated her second birthday! She has come a long way since the beginning and still continues to move forward. Somethings she learns rather quickly and others taker her awhile. She learned how to crawl on January 10, 2010. I was sitting on the floor about 4 feet away from her and she got up on all fours and just started to crawl to me!! My husband and I cried tears of joy!! Since then she has been crawling EVERYWHERE!! She has discovered that there are lots of different rooms in the house to explore!
Danica has been very busy these days with OT, PT, Speech, Interactive communication, Music group, and Swim therapy weekly. She will be starting Hippothereapy in a couple of weeks and we can’t wait to start riding the horses! It seems like alot and keeps me very busy, but Danica tolerates it all very well. If she is having an off day we let her take it easy or miss a therapy if necessary. She is currently using a Pacer gait trainer and does great in it. All she wants to do these days is hold your fingers and walk around. Just these past couple of weeks she has learned how to pull herself up to stand on furniture and objects! We are so grateful for all her accomplishments and owe alot to her therapist for teaching us how to work with her so that she can progress.
Danica is stilling having seizures/spasms only about 3-5 a week. Her recent EEG came back with no signs of infantile spam patterns, so her neurologist believes that her spasm/seizures maybe be changing to focal seizures. She has been taking Vigabatrin and topamax, but just this week was put on trileptal to see if that stops the episodes she is having. The 3-5 episodes that she is having a week are still very short and do not affect her day, so we are grateful for that. Besides those episodes she is very healthy.
We continue to post videos on YouTube so please feel free to check them out, just search Danica Deneault, some are pretty funny!!

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