Orion's Epilepsy Treatment

Hey family, Reniece here. Mummy to the star boy that you all know and love – Orion.

As you may well know, for most of Orion’s life we have been battling epilepsy.

Orion has a rare disorder of the SCN1A gene. (This was something that I had suspected for a while through research I had done but the consultant at Lewisham hospital told me that it was unlikely he had this because his development didn’t fit the criteria). Hayden and I don’t have it (this is referred to as it being de novo). It is basically a mutation of this gene which inhibits proper brain function through the sodium channels. With this gene disorder, there is a spectrum of diseases – the mild end being generalized epilepsy with febrile seizures and the more severe end is a condition called Dravet syndrome. Children who have this gene and are de novo usually fall on the more severe end of the spectrum as oppose to children whose parent/s have the gene mutation as well, being more mild. Our consultant at St Thomas’ hospital has said that although it isn’t the norm, Orion appears to be on the milder end of the spectrum due to the fact that he is thriving in his overall development (proud mama moment) and if his cognitive development was to be affected by the gene mutation, it would have happened within the first year or two of his life. This of course is the better end of the double edge sword but this also shows that his type of mutation is probably a lot more rare. It has been recommended that he now begins a third type of medication called topiramate which is effective for this disorder but the sodium valporate which was his first medication is also suppose to be very effective for his disorder too and it didn’t work so we are holding off on him starting this medication for the moment. Orion will very soon start ketogenic diet therapy through St Thomas’ hospital.

I am so grateful that we have access to all these different types of treatment to stop his seizures, but these treatments and medicines all come with some very undesired side effects ranging from aggressive changes in behaviour to speech delays and even fatty liver and kidney problems.

Of course, we want to stop his seizures, but we also don’t want to create another health issue elsewhere.

Where we are at now

Through one of the many, many groups and forums that I’m in, I got talking to another mother in America who’s daughter was having daily seizures. This mother works holistically and spent thousands of dollars seeking treatment through naturopaths. But she found, like us, that a lot of holistic and natural doctors didn’t know a lot about the neuroscience of epilepsy and how to specifically treat each patient.

She then came across a man called Daniel Martin who helped her to successfully treat her daughter’s epilepsy in a way that was specific to her daughter’s individual health needs. Her daughter became seizure free after the first month of treatment. Daniel had genetic epilepsy himself since the age of 10 and was on medication for many years but suffered intensely from the side effects of the medications prescribed. He then decided to come off all medications and dedicated many years to discovering and experimenting on himself in different ways to treat epilepsy. He has been seizure free for 6 years and has now set up a company, helping others to do the same.

You can hear Daniel’s story more in depth (and better explained) here:

https://youtu.be/RhmWkqZ4_I0?si=jRcPGHQanv7S2lWi

The mum that I got talking to has now started working alongside Daniel and is helping him to expand the company as she has a background in holistic health care and relevant areas that compliment his services. They have a very high success rate with their treatment stopping seizures and the majority of their clients are children.

We had a consultation meeting with her and have decided to sign up to the treatment program to stop Orion’s seizures. One may see this as a gamble, but we are so determined to stop his seizures and have him be healthy and happy and this program ticks all the boxes in allowing this to become a reality.

We have prayed, hoped and are continuing to fight so hard for his healing that I truly believe we were presented with this opportunity serendipitously.

What we are asking

For the sake of our child and his health, we have to put our pride aside, be brave and ask for help. The treatment costs $4,100 which is around £3,250. Orion will need to have different types of testing in addition to this (bloods etc) to discover his specific needs which we won’t be able to request through the NHS so will have to get these tests done privately. So kindly, we are asking if you would be able to help us with the financial costs and contribute anything you possibly can, no matter how small.

Please know and trust that we are eternally grateful for any help that you can provide.

Peace & Blessings

Reniece Hayden and Orion xxx