Callen’s story begins with an early delivery at 35 weeks. He had some issues with his lungs at birth, but they were resolved quickly and we were sent home with our baby. At age 3 months I realized that he was not able to hold himself up the same way that his older brother could. I expressed my concerns to the Dr., but I was quickly dismissed. At his 6 th month check-up I again asserted my concerns and Callen was diagnosed with hypotonia. That was the start of our journey with disabilities. We were then referred to neuro for a “big head”, but again dismissed as within normal limits.
At the age of 12 months Callen finally began to sit on his own, and at the age of 15 months he began having what we called “scared baby.” The therapists that were coming into the home assured us that these startles were just him being overstimulated by his surroundings. It wasn’t until the age of 17 months that he had his first tonic-clonic seizure that we sought medical attention and he was diagnosed with epilepsy. We were then informed that the startles we had been seeing were myoclonic clusters.
We spent the next 6 months figuring out different medication combinations. We finally fell into the right combo of meds and were able to gain seizure freedom for 3 years. Callen made very small strides in cognitive growth during these years. He also struggled with respiratory issues, tracheobronchomalacia, ear infections, apnea, feeding issues, and lack of weight gain. He began walking at age 2, so we also dealt with many falls due to the hypotonia.
Due to poor growth and a complication from Botox injections we had a g-tube placed. Immediately following a g-tube placement surgery Callen had his first break through seizure (age 4). He then had seizures about every 2 months until we increased his medication dose. We then got another 16 months without a seizure. His seizures evolved to 4- or 5-minute tonic clonic seizures twice a month for the next couple years.
Then CBD entered our life. Over the last year we have worked hard on completely weaning off of pharmaceutical medications. We experienced significant withdrawal seizures, but believe we are through that rough patch. Our current situation- we have gone from 2 different seizure meds to now being 2.5 months seizure free on no pharmaceuticals (only his CBD spray!).
Callen is always gaining and is starting to verbalize words like hi, bye, yea, and no. He is using sign language to communicate other words. He is now walking without assistance and runs like a mad man! Focus and attention are very difficult for Callen as he is easily distracted, but we hope to work up his tolerance to sitting. His radiant smile and charming personality keep him out of a lot of trouble!
Callen is currently 9, and our biggest barrier at this point is his behavior. We are hoping to work with a school that specializes in ABA therapy to address these issues.
Diagnoses:
Generalized epilepsy (myoclonic and tonic-clonic)
IDD
ASD
Tracheobronchomalacia
Hypotonia
Developmental Delay
Sleep Apnea
Asthma
Allergies
Delayed Swallow
Dysphasia.
At the age of 12 months Callen finally began to sit on his own, and at the age of 15 months he began having what we called “scared baby.” The therapists that were coming into the home assured us that these startles were just him being overstimulated by his surroundings. It wasn’t until the age of 17 months that he had his first tonic-clonic seizure that we sought medical attention and he was diagnosed with epilepsy. We were then informed that the startles we had been seeing were myoclonic clusters.
We spent the next 6 months figuring out different medication combinations. We finally fell into the right combo of meds and were able to gain seizure freedom for 3 years. Callen made very small strides in cognitive growth during these years. He also struggled with respiratory issues, tracheobronchomalacia, ear infections, apnea, feeding issues, and lack of weight gain. He began walking at age 2, so we also dealt with many falls due to the hypotonia.
Due to poor growth and a complication from Botox injections we had a g-tube placed. Immediately following a g-tube placement surgery Callen had his first break through seizure (age 4). He then had seizures about every 2 months until we increased his medication dose. We then got another 16 months without a seizure. His seizures evolved to 4- or 5-minute tonic clonic seizures twice a month for the next couple years.
Then CBD entered our life. Over the last year we have worked hard on completely weaning off of pharmaceutical medications. We experienced significant withdrawal seizures, but believe we are through that rough patch. Our current situation- we have gone from 2 different seizure meds to now being 2.5 months seizure free on no pharmaceuticals (only his CBD spray!).
Callen is always gaining and is starting to verbalize words like hi, bye, yea, and no. He is using sign language to communicate other words. He is now walking without assistance and runs like a mad man! Focus and attention are very difficult for Callen as he is easily distracted, but we hope to work up his tolerance to sitting. His radiant smile and charming personality keep him out of a lot of trouble!
Callen is currently 9, and our biggest barrier at this point is his behavior. We are hoping to work with a school that specializes in ABA therapy to address these issues.
Diagnoses:
Generalized epilepsy (myoclonic and tonic-clonic)
IDD
ASD
Tracheobronchomalacia
Hypotonia
Developmental Delay
Sleep Apnea
Asthma
Allergies
Delayed Swallow
Dysphasia.