Hi everyone - I am new here. My 6 month old son was recently diagnosed with infantile spasms and cortical vision impairment. Is this a common co-morbidity? Can anyone she positive stories about dealing with either of these? I am so scared for his future...
Hi Gabrielle, welcome to the community. I don't have any experience with your situation, but I can understand how scared you are for your baby's future. Try try try and stay positive through this. Lean on your family and your friends. I hopey ou get some answers for you and your son.
Hang in there. You are right it is still early and have faith (or find) the best care possible for him.
Our son was diagnosed with epilepsy at 19 months old and we were told he'd probably outgrow it. Then when things got worse we were sent to epileptologist at a different hospital where he was diagnosed with infantile spasms. I remember how scared and sad I was that day. They talked about medication, possible surgery, and quality of life. They also sent someone to see me about caring for a child with special needs.
They then sent us to another doctor at another hospital where we were then told he most likely had infantile spasms but most likely also has cortical dysplasia. We are still in their care and after trying 5 different medications and finding the possible 2 that are helping him he is now 10 months seizure-free. We are told that the seizures will most likely come back, but that it is key to be constantly monitoring him (he gets an MRI once a year and an EEG every 3 months) to make sure we aren't missing any seizures (sub-clinical or otherwise.) I trust them implicitly and know he is the best care. He has also received early child intervention for his speech and OT and now he is getting services through his preschool.
This whole thing is so scary and nerve-raking. I try to take it day by day and celebrate all of his seizure free days and also celebrate all of his successes. Our son is a very happy kid and you would never know what he has been through. I don't know what lies ahead, but presently he is doing awesome.
Good luck and reach out any time.
We have good friends whose son (now 15) has cortical vision impairment and epilepsy. He has cognitive impairment as well. He will never live completely independently. This is the hard possibility to come to terms with. That said, he is the most delightful, engaging young man. He is joyful and a joy-giver. You cannot be in his presence without smiling and enjoying his wit and his spirit.
Our kids may never have "normal" lives, but they live lives that contribute to this world in ways that most of us never will.