3 year old - Brain Stem Encephalitis (bacterial)

[Tash191291]

Hi all

I am looking for success stories to remain positive and have faith that my little nephew will wake up.

He was vomiting on Wednesday - taken to ER, started having seizures and became unconscious and unresponsive with a Glasgow scale score of 3.

Dr’s are blunt and don’t know the cause of this. Are they always so negative?

We are praying and keeping positive. It’s only been 5 days and we think he needs more time to heal.

Please share any success stories you have.

Thank you

[Kirk5w7]

Hi Tash,

This may help, or not.

Yes doctors will always err on the less than positive side because no one can predict the outcome of brain traumas.

I had viral encephalitis over 5 years ago. The type you mention is, I think more common in children.

I was in a coma with a GCS of3 for 3 weeks and my family were given no hope at all. They expected me to sustain multi organ failure because my brain activity was so low, and if I did survive I would be in a permanent vegetative state. But no, here I am having recovered miraculously.

I had to be taught to walk again I was initially dyslexic, could not dress myself etc etc. I had to relearn a lot of things, reconnect the pathways that had been destroyed by the swelling.

I have some peripheral vision loss, the optic nerves are squeezed when the brain swells and oxygen deficiency can affect the sight.

Contact the Encephalitis Society if you haven’t already, they can answer questions and provide support. It is a time to support and be strong for one another, patience and waiting, which is far from easy.

Speak to your nephew when visiting him, include him in conversations and if you can play him his favourite songs and films, read to him. Keep trying to stimulate his brain in a positive way.

I hope that you hear happier news soon xx

Janet

[charlieab]

Hi Tash

Ive got no real experience or advice but just wanted to wish you luck. I think Janet is right about keeping him stimulated as much as possible, such as reading his favourite stories. I think this can make a real difference.

Also if his doctors dont know what is going on, then might be worth asking for a second opinion or additional opinion? Someone else might introduce some useful ideas.

best wishes

R

[cat3]

Poor little man. With any brain injury/sickness the doctors cannot commit to an outcome as they simply don't know how the patient's brain will deal with a particular issue.

I do know they'll be doing everything possible to bring about your nephew's recovery. The brain is an amazing organ and there's every reason to hope for a good outcome. We see many desperate posts here which resolve with time.

He needs to hear familiar voices together with physical contact. I pray you'll have better news for us before too long Tash. Sending every good wish, love Cat x