So if you have been following us long enough, you know that I will try and read whatever it takes to help give Walker a chance at recovery. Our prayer the whole time has been for Restoration Please Lord. So with all the different medicine that Walker was on since the beginning of this journey, nothing has worked to stop the seizures and allow him to return to himself. I have weaned his doses slowly to half of what they were when we left Inpatient in September but it is a long slow journey. The anti seizure medicines are no joke and require very slow weaning because they are highly addictive and have bad side effects. We are making progress but still so far from where I hoped we would be at this point.
Walker is still having seizures and stops breathing.
Walker is still non-verbal.
Walker is still not communicating.
Walker is still on three different anti-seizure meds: Onfi (22.5mg a day), Topamax (300mg a day) and Vimpat (150mg a day)..
Walker takes Vitamin D, Vitamin B6, Probiotic, Vitamin E, Multi-Vitamin, Folic Acid, Taurine, Magnesium, Fermented Cod Liver Oil, Vitamin C and MCT oil with Rose oil (brand new, Thanks Amy!). He gets 2 drops of Copaiba and 1 drop of Helichrysum a day in coconut oil. We use Frankincense or a Brain Power Blend at the onset of a seizure or to help distract when starting to show signs of one starting. Sometimes it works, sometimes it doesn’t but more effective then not.
Walker has been on the Modified Atkins Diet at 10 carbohydrates for the past three months. I’m slowly transitioning him to Paleo Approach for Auto Immune Disease . It worked a little but not enough for me to continue allowing his body to think that it is starving and it also caused some drama with constipation. I’m happy to end that journey.
Walker is still going to the chiropractor several times a week.
Walker is still in Home Therapy with Speech 2x a week and OT and PT once a week. Walker is still seeing the ABM therapist when he is in town one week a month.
Walker is improving in his strength, stability and eye contact.
There are good things happening but there are still the seizures, the sleepiness and confusion.. It’s one step forward, two steps back. Andy and I are so tired of this journey but there is new hope for us this week.
I’ve shared about the possibility of CBD oil being something that we can try. On Thursday, it should be available for purchase.. legally! We are so excited to get our first bottle and see if it works for Walker. Our goal with trying this is weaning down off the rest of his seizure meds. This has had many stories of success for other children with encephilitis, seizures and even cancer. I’m scared because we will be managing his care of the dosage and will have to visit a new neurologist in Charleston who will help with this new process.
Please pray that we can get a bottle. Please pray that Walker’s body adjusts to this new oil. Please pray that this works. Please pray for some relief for him and for us.
If you want to read more about CBD oil.. We are using the Whole Plant High CBD Oil with less then .3% THC. Here is a link of info: Understanding Cannabis