PRESSURE
Love’s such an old fashioned word
And love dares you to care for
The people on the edge of the night
And love dares you to change our way of
Caring about ourselves
….
This is our last dance
This is ourselves
Over the past two years we have searched desperately for a way to help Harper achieve her full potential and all the while it was right with us. It is going back to the simple things in life. It is recognizing that Harper is to be parented like any other child. Those of us called to have children are to raise them up and guide them into the person they are called to be. We do this with love, discipline and coaching no matter the child’s needs or developmental abilities.
In my efforts to desperately help Harper establish a since of “normalcy” I have created an environment of chaos. Rushing from one therapy to the next, structuring her day around feeding times to help control seizures and therapy times to help her improve, forgoing family time and time to recognize the improvements. In this realization I have taken the opportunity to stop all things! I have canceled all of Harper’s therapy except her Aqua therapy and Anat Baniel intensives. This was a hard decision to implement because I like her therapists and will miss seeing them multiple times per week. For now I know for sure I will reintroduce Spirit Horse therapy in the fall when it starts again. But I think it is time to give Harper a chance to process what she is learning and spend time with the family. Obtaining more freedom for her body to rest, relax and recuperate and learn to play with her sister who she adores.
It is not just about the type of learning environment Harper and Lily are in but also diet! Diet plays a HUGE part in our families health and mood. Prior to Christmas 2011 Harper was having 3 mild seizures per day approximately 2 hours after consumption of goat milk, her only source of carbohydrate at that time. Since then we have been able to help Harper gain better seizure control through the use of diet. However, in obtaining this things got worse before they got better. Her medication and dosages have remained the same. The only changes being made are in the area of diet and supplementation. We have been able to go 4 to 6 days in a row with no seizures. Then we will have a day of 6 to 12 seizures followed by another 4 to 6 days with no seizures. We are still very much in the learning phase of this type of treatment for Harper’s disorder but so far we are pleased with the success and feel it is a good direction for the entire family. (Gerson.org)
We have been encouraged by our geneticist to find a doctor knowledgeable of the CDKL5 gene itself willing to determine which metabolic pathway is disrupted by this genes inability to perform. From there we can begin to determine the best way to eliminate the seizures caused by this disorder. Until we are able to find this willing doctor we simply stubble along following the path of opportunity laid before us. Along with Harper’s primary Pediatrician and Neurologist, we are working with retired Dr Nick Martin in TN thanks to Martha Boyles and Dr Gary Randall, Neuroimmune specialist with NeuroSensory Center in an effort to help Harper establish seizure control.
For those interested…HARPER’S CURRENT DIET:
Medication: Lamictal and Depakote, along with temporarily for three months –Acyclovir, and Amantadine
Supplements:
- Maca Powder – in a random meal on occasion
- Flax – in random meals on occasion – source of fiber
- Cinnamon – couple of dashes in her breakfast fruit – blood sugar regulator
- Coconut Oil – 1 tablespoon in random meals for calorie boost
- Chlorella – 9 tablets per day (3 at each meal for the first 3 meals of the day) – helps body detoxify it’s cells
- Biotin – 5,000mcg instant dissolve tablets (5 per day, 1 with the first 3 meals of the day and 2 at her last meal) -blood sugar regulator
- Omega 3 – 2g per day = 8 of the Oceans Kids DHA Chewables – anti inflammatory
Foods: all food as of now is pureed using a blender
- NO DAIRY – we find raw dairy is the healthiest dairy and Camel Milk is said to be the easiest to digest and highest in vitamins than any other milk. When we have to NG tube Harper she is fed raw camel milk from BenderCamel Dairy (574-326-7985) Contact Dallas Bender for delivery details.
- We minimize carbohydrates by making sure they only come from fruits and vegetables but she can eat Quiana and Sprouted Bean Trio on occasion when other carb intake is highly monitored and minimized.
- All fruits and vegetables chosen are blood sugar regulating and low glycemic index (LiveStrong.com)
- Fruits – Pear, Apple, Berries (raspberries, strawberries, blackberries, blueberries) Goji Berries
- Vegetables – Beets, Kohlrabi, Cauliflower, Broccoli, Spinach, Kale,
- Meats – easy to digest, high calorie, small portion = Lamb and Elk both about 150 calories per 50 grams. She can eat chicken but it would take two chicken breasts to equal the calories in the 50 grams of Lamb
- NutButters – peanut butter and almond butter are two we have tried, these are high in protein and calories in a small portion
Food we have found to cause seizures: Avocado, Banana, Carrot, CORN STARCH and any Dairy, Sugars and Carbohydrates
Portion size matters because Harper can physically only eat so much food at one time. It is imperative that Harper get an adequate amount of calories per meal. We have noticed that if she starts to burn her stored energy she has an increased amount of seizures in clusters 20 to 30 minutes apart. If this happens it is usually very exhausting for her and then becomes impossible to feed her therefore increasing her seizures even more and we are forced to NG tube in an effort to stop the seizure cycle started from lack of adequate calories consumed. This is very much a trial and error process with massive amounts of research behind each food or supplement tried.