A complication we thought we would never have with Harper: WEIGHT GAIN!
Since age three Harper had hovered between 20 to 25 pounds, even with the use of the g-tube. We maxed out the fat calories in her diet (through healthy oils) and Harper still did not gain weight! She physically was not capable of consuming any more calories than she was being given. Her little body could only take in so much food. I felt she just was not able to absorb the nutrients properly due to her rare CDKL5 disorder.
The activity that burned most of Harper’s energy is absent
With the use of HempMedsPX RSHO (high CBD Industrial Hemp Oil) Harper has experienced an immediate reduction in the daily activity that expended most of her calories…..SEIZURE!! Without seizures Harper is retaining more of the calories she is consuming. I believe her body’s ability to absorb the nutrients has improved as well. In one year she has gone up two g-button sizes and it is looking like she will have to have an increase in her g-button size. Her most recent resizing was just one month ago.
Percentiles and typical growth ratios cannot apply to special needs kids
Weight gain was great news initially as we saw her grow from 23 pounds to 27 pounds., then 30. But NOW….Harper is 35 pounds and still growing!! To some Harper may still seem on the lighter side of the scale. A typical mobile 4-year-old gains weight as mostly muscle, but for Harper this new weight gain is in the form of fat. The heavier she gets the harder it is to position her for everyday routines like moving her in and out of the bathtub. As an immobile child, Harper is unable to ‘help’ us when we lift her. This is new for us and we are making adjustments to keep a healthy happy Harper!
When compared to seizure, Harper’s weight gain is a new challenge we accept gladly
We try to keep Harper as physically active as possible while she works very hard day-to-day and in therapy to regain simple skills such as head control. 
Other good side effects from her use of RSHO (in addition to the display of emotion, increased interaction, and attempts to do more physically) is that Harper is showing signs of hunger at her feeding times. 
To compensate for her lack of calorie exertion from seizures we have reduced her calorie consumption. Maybe it’s a good thing we choose a 5K Family Fun Run as her main fundraising event for the year which is coming up on September 6, 2014. This year Harper will still be in her wheelchair BUT for the first time she’ll be there SEIZURE FREE!
Maybe next year she’ll be there standing up! She is working on it already.
We will just have to wait and see…
I wonder what other challenges or adjustments Harper’s new seizure-free life bring? Please share any insights and experiences you’ve had.