Owen was born at 39 weeks, planned C-section. Normal pregnancy, normal delivery… He was admitted in NICU after his blood sugar dropped and stayed there for four days. Owen progressed somewhat normally, hitting milestones until he was eight months old. I started noticing he couldn’t sit up by himself, no crawling, etc. He was enrolled in physical therapy, which then turned into occupational therapy, speech therapy and enrollment in the Early Intervention program. At 2 he was still not sleeping through the night so I took him in for a sleep study. They realized he was having seizures, but it took another 6 months to convince the neuro these were indeed seizures. Up to this point, Owen didn’t have speech and they didn’t think he ever would. At 2 ½, he had a significant seizure, and neuro was finally convinced it was epilepsy. After trying every possible seizure med (he is allergic to all of them), he is on Topamax and doing well. Amazingly, he started talking…and now won’t shut up. (:
He battled recurrent sinus infections for over four years and had several surgeries to have tem cleaned out, adenoids & tonsils removed, etc. He is no longer on preventative antibiotics, and health wise is doing well. He is small for his size, (less than 1st percentile) but his growth hormones checked out normal (*see update below). He has been diagnosed as PDD-NOS by the C.A.R.D. Institute at Kennedy Krieger. He has a mutation of 2q23.1 diagnosed by a Harvard Study, none of his doctors ever caught this. His karyotype went from 46, XY, t (2:5) (q22;q22) to the following: 46, XY, der(2),t(2;5)(q23.1;q23.1)inv(5)(q23.1;q23.1), der(5)t(2;5)(q23.1;q23.1) and a 41 bp of deleted sequence. Please don’t ask me what any of this means. His biggest road block is in his cognitive delay, he did test as MR for what’s it worth. He receives three days a week of one on one therapy with a private ABA therapist and goes two days a week to a developmental pre K program that includes typical kids and non-typical kids. He is not potty trained, which is such a battle.
Now to update, this was originally written three years ago. So much is happening with Owen, both medically and developmentally. On the developmental front, Owen continues all of his therapies (PT, OT, ST, and ABA therapy five days a week). His IQ is considered developmentally disabled and school remains a struggle for him. While he does make some progress, it is hard for him. He has ADHD and is a stubborn bull when he wants to be. He is on extended standards and receives most of his academics in the collaborative classroom. He can now identify all of his letters, but is unable to write or read. He cannot consistently identify colors, but can match them for the most part. He can count into the thirties before he starts skipping. His teachers have noticed he is more social and actually talking with his classmates, which makes this mama’s heart sing. I believe he is on the right path for Owen and he will make progress at his own pace, not anyone else’s.
Medically, we still struggle a considerable amount. Owen is enrolled in a medical cannabis study at UAB (Birmingham, AL) and is one of fifty children in the state that was chosen to participate for his intractable epilepsy. It has helped tremendously and his last EEG showed no signs of abnormal brain activity. Owen has had six ear surgeries (to date) with another coming up soon. After his second tympanoplasty on one of his ears, the doctor suggested we test for low immune system. Sure enough, his immune system was critically low and we began IGG treatments this month. We are hoping Owen’s body will respond so he won’t stay so sick and his body will heal after surgery. Year to date, he has missed over 20 days of school this year. The specialists we see on a regular basis include: neurologist, gastrologist, immunologist, ENT, psychiatrist, and endocrinologist (low growth hormones). Owen still does not sleep through the night, which impacts so many other areas in his life.
Owen is in love with any electronic, especially the iPad and Wii. He is also fascinated with fire trucks, ambulances, and policemen/cars. He is argumentative to a fault (I swear he would make a great lawyer) and doesn’t take kindly to being told no. He is the love and light of my life (along with big brother)…and also a challenge because of his personality. If anyone has any questions, please feel free to contact me. I hope this story helps in some way to anyone with the same challenges as we have faced.
– Owen’s Mom
Hi Owen’s mom,
I was wondering if you could talk a little about challenges in feeding him as an infant. My son, who is just a month old, was just diagnosed. He has trouble taking his whole feeds. We are still in the hospital and have not been able to take him home with is yet. Initially we were transferred to Yale for suspected seizures and apnea, which he hasn’t had in 2 weeks. Now his eating has become irregular. Sometimes he does great other times he doesn’t. He is on reflux meds, which I think are helping. Some days without rhyme or reason he is just screaming and gets so worked up that he can’t finish his food. I’m trying to collect data so I can make my case against a stomach feeding tube. I know that he can do it, as I’ve seen him eat so well. Can you share how those early months were for you? Thanks in advance.