Cannot Wake

Kade is now 8 weeks post IVIG. The diet changes have kept him on a level where he still has no anger or frustration. Bloods are back and he has multiple food allergies. Coxsackie and bartenolla are positive also. Finally answers, something to work with. Kade does not have lyme. I am astounded at Dr G’s knowledge and understanding. Even before bloods were done he said he did not think lyme. More likely viral or bacterial infection, based purely on Kade’s presentation of his illness.

We are yet to meet with Dr G to discuss the results of Kade’s tests and I am looking forward to hearing what all the results mean. I understand that his body is not creating energy properly and this is the cause of his chronic fatigue. It is not in his head and has never been. This is a real and true physical illness. I can let go of IVIG as we now know the root cause, the true culprits. IVIG was a sticking plaster, like I had been saying for a long time.

I have been struggling lately wishing I had found Dr G two and a half years ago. Could this have been nipped in the bud, my son could have been better, years ago. Instead his body and mind are battered and the guilt runs deep. My brain never stops even for a second, he is always on my mind.

I will see this through, right to the end, because there will be an end. This disease will disappear from where ever it came, but it will never leave me. Knowing that this condition is thought to not exist blows my mind. There is so much proof that it is real but it is disregarded by so many. The thought that my child would have had to live the rest of his days trapped within his own body and mind is truly terrifying. Minds must be changed, for the future of so many children depends on it.

We are all fighting for the same thing. We want our children to return from the hell they are living in. If you had told me years ago that such a disease existed I would never have believed it. A disease that snatches your child, from right in front of you’re face. Suddenly they are gone. Physically and mentally they fight every day against their own bodies. What hell this must be, I can only begin to imagine. Like a nightmare from which you cannot wake.

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