My daughter has cerebral cortical dysplasia

by Amber
(Crown Point, IN, USA)

Well, I'm glad I found this opportunity to share my story.


My daughter was diagnosed with cerebral cortical dysplasia in early 2009. She was 6 yrs. old. She had a seizure one day and scared me half to death. I've never had to personally deal with anyone having a seizure in front of me. After what seemed like a million tests, they explained the condition to me. She has minor seizures while she is sleeping, so her quality of sleep is not very good. The seizures seem to continue when she gets up in the morning. That is the only time she has a seizure is in the morning. Sometimes I can catch it before it gets too serious, and get her medicine in her. Other times, I'm just not fast enough.

Now she has started having drop attacks. By the way, she's only 7 now. She'll be 8 in 3 months. At first I thought things were gonna be ok. But, lately the seizures seem to be getting worse and more frequent. I'm scared to send her to school everyday. I'm scared to let her go outside. I'm scared to let her do anything that I'm not there to watch her. Mentally, I know I have to, but emotionally, I want to wrap her in a blanket and hold her for the rest of our lives.

See, things started early with her. By the time she was 8 months old, it was determined that she had a nerve condition with her right eye, and basically is blind out of that eye. Then, by the time she was a year old, it was determined that she was mentally retarded. Then at the age of 5 it was asthma and allergies, then at 6 was the seizures. I actually fear taking her to the doctor anymore, because it seems like every time I deal with one thing, something else comes up.

But, now my biggest concern is the seizures. You know what's so funny about this whole thing? I swore that I wouldn't be one of the mom's that followed their kid around with medication's and an inhaler! Now look at me! That's exactly what I have to do. I have an inhaler in my purse at all times for her. plus there is one at home with the rest of her meds, and of course, she has one at school. Whenever we go somewhere and I don't think we'll be home in time for her meds, I take them with me. And I'm always watching her. Just waiting for something.

I love my daughter, but I am beginning to feel more like a care taker than a mom. I watch her and I worry about her, and if I see the slightest little twitch, I'm on top of it. That's what really stinks. I watch and I worry, and I watch and worry some more, and watch and worry even more. Doctor's say that surgery won't help. And I've gotten the second opinions, and third opinions. Now, I find out that she may outgrow the seizures in adulthood. But there's only a 15% chance. There's an 85% chance that she won't. And it goes the same as far as her being independent, or dependent. And as far as her learning. Well, that's another issue. She's always been in some kind of special education, different therapies, and now I find out that she may regress. REGRESS! I fight and I fight for my daughter to have some kind of normalcy to her life, and it seems like every time we get a step ahead, we get pushed 2 steps back.

Sorry, I guess I'm just rambling. But I really have no one to talk to about this. At least no one who understands. I'm glad I found someplace to get some of this off my chest. See, my husband is also mentally disabled. He's not so disable that he can't function, he just doesn't comprehend what all this means. I mean, he knows that his daughter has her problems, and he tries so hard to be there for the both of us. But due to his disability, it's like he only get's half of the picture. And see, the worst problem that I have with all of this, is that I totally blame myself. Everything she is going through is all conditions that she was born with. So, since I'm the one that carried her for 9 months I totally blame myself for everything. I am constantly thinking that if I had done something different, she would be fine. But I did everything I was told by the doctors. There was never an indication that there would be all these problems. I mean, I really think that I could handle the mental retardation, the blindness, the asthma and the allergies, but the seizures is what I'm having the hardest problem with.

Whenever she has a seizure, I pray that I could perform a miracle and just make them go away. But then again, doesn't every parent think like that? If anybody out there has some encouraging words of wisdom, I would really appreciate it. Cause let me tell you, I could really use some right now.

Comments for My daughter has cerebral cortical dysplasia

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Aug 31, 2013
At least she is alive
by: Anonymous

My son had his first seizure at 11 months but the doctors at the hospital misdiagnosed him and said he had a "dystonic reaction to Benedryl. I begged while in the hospital fir neurological testing. The physicians in staff didn't think he needed it and labeled me as an attention seeking mom. I changed pediatricians for a second opinion and the 2nd pediatrician also minimized and dismissed my concerns-my son is now dead from a seizure in the middle of the night. We had to wait four months for our 2 1/2 year old sons autopsy to come back before it was diagnosed. So-I am sorry fir you that it's hard but trust me...it's harder to bury a child than chase one around with meds...

Apr 14, 2011
Glad to hear it
by: Anonymous

I am glad to hear your dauter is ok, I am only 10 and I am doing a project, found this website and read your story. I hope she is ok, and that it will not happen again.

Mar 30, 2011
GOD BLESS
by: Anonymous

I AM VERY SORRY TO HEAR OF YOUR DAUGHTERS MEDICAL CONDITIONS. I CAN RELATE TO YOU STORY MYSELF. AT THE AGE OF 12 I WAS DIAGNOSED WITH EPILEPSY. BY AG 15 I WAS DIAGNOSED WITH A BRAIN TUMOR. FOR 5 MONTHS I HAD MONTHLY MRI AND DR. APPOINTMENT. AT ONE OF MY DR. APPOINTMENT I HAD PAPILLARY EDEMA AND WAS RUSHED FOR AN EMERGENCY CRAINIOTOMY. A CYST THE SIZE OF A AN EGG GREW BEHIND THE TUMOR. I WAS SEIZURE FREE FOR ROUGHLY 3 YEARS. BY AGE 21 I BEGAN TO HAVE SEIZURES AGAIN. THIS TIME THEY WERE INTENSE GRAND MALS PLUS UP TO 20 PETIT MALS PER DAY. BY AGE 25 I WAS WORKED UP FOR A CHANGE FOR A SECOND SURGERY TO REMOVE THE FOCI AREA IN MY BRAIN. I HAD TRIED SEVERAL MEDICATIONS WITHOUT ANY SUCCESS.
2 YEARS LATER I WAS READY FOR SURGERY AND I UNDERWENT ANOTHER CRAINIOTOMY. FOR 7 DAYS I HAD WIRES HANDING OUT OF MY HEAD FOR BRAIN MAPPING. FINALLY ON THE 7TH DAY I UNDERWENT MY 3RD CRAINIOTOMY. THEY REMOVED A WALNUT SIZE OF MY RIGHT TEMPORAL LOBE AND AN EGG SIZE (ONCE THE PATHOLOGY REPORT CAME BACK) REVEALED CORTICAL DYSPLASIA.
I AM NOW DOWN TO 2-5 PETIT MALS A WEEK AND HAVE NOT HAD ANY GRAND MALS IN ALMOST A YEAR. THIS APRIL WILL BE ONE YEAR SINCE MY LAST SURGERY. UNFORTUNATELY WITH CORTICAL DYSPLASIA IT IS IRREVERSIBLE TO LEARN HOW TO READ, MATH SKILLS, ETC. BUT IN THE LONG RUN I AM ALIVE AND ABLE TO DRIVE AGAIN AND WORK.
GOD GRANT ME THE SERENITY TO ACCEPT THE THINGS I CANNOT CHANGE. COURAGE TO CHANGE THE THINGS I CAN. WISDOM TO KNOW THE DIFFERENCE.

GOD BLESS

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