Life is good, there I can say it. My son smiles and laughs. He rides his bike, he can go for short walks. His memory is improving at a dramatic rate of late, and his tics are barely noticeable. There is no pain in his world any more and he laughs at my attempts to be funny. He has more good days than bad and he is making great strides in areas of his life that are important to him.
We continue to do mitochondrial support, detox and keep a close eye on his diet. We have introduced a few foods with no adverse consequences. On the 30th of December 2018 we began using herbal remedies, they are aimed at killing off the Coxsackievirus that is in Kades system. Dr G explained that the Coxsackievirus is an RNA virus there for herbal remedies are better at targeting it, compared to regular antivirals. I was nervous to begin with as I had read a lot about them and they are quite potent. However the affects have been more positive than I could have hoped for.
Burbur-Pinella – Burbur is derived from the leaves of the Desmodium molliculum plant, a perennial herb from Peru. It aids in the detoxification of the liver, kidneys, lymphatic system and the ground matrix. Pinella is extracted from another perennial herb in Peru, Pimpinela amisum. Pinella is reported to be useful for eliminating toxins from the brain, spinal cord and the peripheral nervous system.
Takuna – is a supplement produced from the bark of the Cecropia strigosa tree, native to South America and Mexico. It has anti-viral, anti-bacterial and anti-fungal properties.
Samento – is a supplement that contains pentacyclic oxindole alkaloids from the Cats Claw plant, and bark extract from the same plant, less commonly known as Uncaria tomentosa, it has anti-inflammatory and anti-microbiol properties.
I have only used the herbs from the Nutramedix range and would recommend them to anyone looking to try any herbal protocol.
The main difference I have seen in Kade since using the herbal remedies is a big reduction in brain fog and an increase in his ability to retain much more information. This was improving gradually but since starting the herbs it has became quite significant. His tics are definitely decreasing as well. His chronic fatigue is still a big issue, however he maintains slow but steady improvement in this area.
The fact Kade is no longer in pain thanks to the Pregabalin, means he is able to keep pushing forwards. He still presents with a functional gait and cannot run. Kades functional doctor has suggested it is perhaps weakness in his core muscles that may be affecting his mobility, so I am going to ask his physio to address this.
I understand it will take a long time for Kades brain and immune system to completely heal from PANS however I have reached a point where I feel I can relax. I do not fear a relapse anymore. My gut is telling me it’s going to be alright now. We have done and are doing enough. Since starting functional medicine last June he has made slow but steady progress, it has not been a easy climb and there have been many bumps in the road but the improvements are clear to see.
That is probably why I have not written on here for a while, I tend to use it as my sounding board when times are rough.
When I think of all the battles Kade has been through, how many times he has won, I am extraordinarily proud. I see him so clearly now and he is no longer out of reach. The gap has closed and he is right here, beside me once more.