Tags: Living with Hypothalamic Hamartoma
Our story starts when I was 35 weeks pregnant with Carson. A routine ultrasound revealed that Carson had a very large cyst in his brain. Further follow up suggested that it was coming from the hypothalamus region. We delivered normally at 39 weeks, further testing couldn’t confirm anything else, so it was decided when he was 1month old that he would have an MRI.
That day came, Valentine’s Day 2011, at 1month old. It was found that Carson had a very large 4.5 cubic cm tumor (hypothalamic hamartoma lesion) in his brain. SHOCK was an understatement!
Two days later we found ourselves at Seattle Children’s hospital Neuro-oncology clinic with an unclear diagnosis, but it wasn’t malignant. Two months later another MRI to compare to the first and a round table discussion with the Seattle Children’s team. It was diagnosed that Carson had a very large type 4 hypothalamic hamartoma! Follow up would be every 3months. “WHAT?” How does our son have that large of a tumor and only follow up every three months?
We started researching who could help us with more information and help!
Daily seizures about 10-20 (that were hard to confirm) but present and by four months old, precocious puberty.
Bimonthly appointments with the Seattle Children’s team, neurology, endocrinology and Neuro-ophthalmology.
By twelve months old, we found the team in Phoenix that not only researches the hypothalamic hamartoma but treats it (we are in Washington state, that is so close)!
Their team reviewed Carson’s MRI and information and recommended their care plan. By two he started speech therapy full time. The daily seizures interrupted his speech patterns. Also, by the age of two, he was placed on two seizure medications and was recommended for open brain surgery (orbital zygomatic approach) by Dr. Ruth Bristol in Phoenix at Phoenix Children’s Hospital.
August 28, 2013 was the surgery day.
Carson was 2.7 yrs old. Nine hours later we met a little boy who has been seizure free since surgery! He had some post-surgery complications related to sodium levels but finally made it out of the hospital on the 14th day!
Fast forward to the present, Carson is a healthy active 7yr old boy! He is still treated for precocious puberty with the Hissterlin implant in his arm that is changed out every year. He is treated for low to no thyroid production, low to no growth hormone production and diabetes insipidus by a really great endocrine team at Seattle Children’s.
We follow a really careful eating plan and monitor food intake to help maintain weight. It’s a daily struggle. Without the adequate production of growth hormone, he is treated by nightly injections, but his metabolism is forever changed and different.
Carson is in a good place, 1st grade mainstream public school and classroom (all of which teachers and therapy teams have taken good care of him)! Starting to read on his own and speech is no longer an issue!
Our family is grateful for such a great team of doctors, we couldn’t thank them all enough!
Carson and Jones Family