It’s never just black and white…

Yesterday we visited the neurologist to discuss the results of Edith’s recent brain MRI. You may remember me saying that the MRI needed to be repeated due to a dispute between doctors as to weather the Cortical Dysplasia was there, or not?

A week or so before Edith started school I had a call from the neurologist and we had a brief(ish) conversation about the results. At that time she informed me that Edith does not have Cortical Dysplasia but rather just an issue with the development of the white matter. All the information she gave to me went in one ear and out the other apart from the aforementioned and the fact that whatever it was they didn’t think it was a de-generative. After putting down the phone I entered into a full blown panic attack. Once again I had been given a lot of information but not fully been able to digest it or take it in and when it’s something you don’t fully understand its very easy for it to escalate quickly in your mind. I drove straight to my Nan and Granddad’s house where I was greeted by various members of my family and comforted. I called Dan and tried to explain things the best I could but in the end we were both left feeling a little out of the loop. We had got so used to the Cortical Dysplasia title; we were comfortable with it. Over the next couple of weeks I hit google search many times which was my biggest mistake and on one evening it resulted in a full scale anxiety attack after finding all manner of diseases that I felt ‘fitted’ Edith. After that I stopped and started to focus on what I could see in front of me not what I had been told of the phone. It didn’t stop me questioning everything Edith did though, to the point that one of my friends and fellow SN mum called me out on it and re-assured me that she (who knows Edith very well) has seen nothing but progress. A letter came a few weeks later and still I had no idea what had really been found on this scan.

I felt sick from the moment I woke up yesterday and was dreading the appointment but at the same time I had so many questions I needed answers too.

On the whole nothing has changed. Edith is still technically undiagnosed. We were shown pictures of Edith’s brain and shown the areas with the issues. It was previously believed that there were issues with both the grey and white matter in Edith’s brain but it now transpires that the grey matter is totally fine. The white matter has formed somewhat ok in the outer areas of the brain but has not developed properly at all in the deeper parts.

My understanding of what is going on is this.

When the brain forms in the uterus the white matter (the wiring) is coated in whats known as a myelin sheath to protect it and when this process doesn’t happen it’s known as hypomyelination (no myelin sheath) and when the process happens but not fully or is much slower its called delayed myelination. The Neuro-radiographer who performed and has interpreted the scan believes Edith has delayed myelination and the Neurologist Doctor believes she has hypomyelination. She openly said to us this is a suspicion and one she would like a second opinion on. She has sent the images to a professor in Amsterdam, who specialises in hypomyelination and has written many papers on it, who has agreed to give his opinion but is under no obligation too. She decided not to go into the depths of conversation around hypomyelination until we are sure that’s what it is. What she did tell us is that although its not degenerative it can present many serious issues for the future, one of which she mentioned could be psychosis. It’s now another waiting game for an email back from this professor but as soon as our neurologist hears, she is going to call me.

I feel sick. I feel frightened. I feel paranoid. I feel desperate.

No matter what you may know or think you know about all I have mentioned above, I would prefer you kept these thoughts to yourself.

The neurologist made several other links about Edith in the appointment to do with her mild hearing loss and the condition of her skin, all of which she related to mitochondrial disease. Edith has been tested for this but if the result for hypomyelination is positive then they will re-test with more detail.

On a more positive note it’s now more likely that Edith does not have Epilepsy as previously thought. The neurologist will re-consider this after her 5th birthday and hopefully she can be taken off the medication.

It took so much for me to write this all down and share as it makes it all so very real, but in the spirit of keeping the stigma of mental health at bay, I wanted to be open and honest about how I was feeling. I know this is not the worst result in the world but it’s a blow none the less and I am trying so hard to focus on the fact that there are no confirmations yet and certainly staying away from google. I would give anything for our beautiful girl to have the life that she deserves but I know its my job to promise to help her have the best one she can and that’s a promise I’ll keep forever.

Thanks for reading x

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