New to the group

[Sunworshipper74]

Just wanted to say hello and to share my experiences.

My son was diagnosed with ADEMs in March 2020 and hospitalised in the first week of lockdown. He was very lucky to make, what we thought was a full recovery fairly quickly. He was out of hospital in around a week although he was frail mentally and physically we thought (rather naively) that was the end of it and that time would be a healer. Due to the pandemic my son did not receive any follow up appointments other than a brain scan a few months later but that was it. I wonder now why I didn't realise that follow up should have been arranged. I think it is because I was so relieved that he had actually survived and was home, and with the pandemic being in the early stages we just go on with the strange new reality. We went to see his GP some time later about something else and whilst I mentioned the experience and how awful it had been there was no suggestion of any further action / assessments to be taken or even that I should be looking into it.

It is nearly 5 years now and whilst my son is 100% physically fit he has struggled with school ever since and for a number of years this was put down to bad behaviour. It has become clearer over the last couple of years that actually his executive function is affected, he struggles to plan, organise himself, appreciate danger and the consequences of his actions and generally take any real responsibility. He lives totally in the present without any thought to the future or even the next few days. He also gets angry very easily but only with his immediate family, he can also cause a lot of stress at home with unreasonable and sometime disruptive behaviour. He says he is just a normal teenager and any difficulties he has are just part of the growing up process. To the outside world that is exactly what he is but to those of us living with him there is more to it but it is hard to put your finger on it.

We had help from the Encephalitis Society who were great and spoke to school and the information they provided really helped us make sense of things. We also saw a private clinical psychologist for an assessment prior to his GCSEs which is how we know of the executive function difficulties. This information also explained quite a lot of his behaviour and the reasons for his struggles at school. He is a bright boy and is now doing A Levels and whilst he has matured he is still struggling with settling down to work, planning and organisation.

PANS has been mentioned to us and I have read a bit about it. Has anyone here had any experience of this and encephalitis? I am at a bit of a loss as to what our next steps should be but feel we do need to do something. Has anyone had any experiences similar to ours that can shed any light?

Thank you

[kitnkaboodle]

Your son and family have been through so much. I got sick in October 2020, during the first pandemic spike where I live, at age 24. Brainstem encephalitis, meningitis, transverse myelitis, sepsis. I know what it’s like to not get the care needed at the time, or to be misunderstood/misdiagnosed or dismissed… repeatedly. Time after time. One doctor even suggested PANS/PANDAS for me as well. It’s just a load of BS (for me, anyway). Now, they are saying functional neurologic disorder (non-epileptic seizures). Yes, sure, I have some functional components, but all of this was caused by an organic brain disease of an unknown origin that caused a specific pattern of brain damage. All that to say, no one knows what they are talking about for my case and probably for your son’s. I’m going to Mayo Clinic in Rochester, MN next month as one last “second opinion.” It’s more about finding ways to cope with life as it is and try to find dozens of little things that help a little bit. Sorry for rambling—I hope some of this is helpful.

[Sunworshipper74 in reply to kitnkaboodle]

Thank you for taking the time to share your experiences, you have been through a lot and the information provided is helpful and certainly not rambling. Your statement that it is about finding ways to cope with life as it is now is particularly useful. My son has no concept of being any different to teenagers his age which can cause issues but this way of looking at things will I am sure be helpful. Thank you again.

[kitnkaboodle in reply to Sunworshipper74]

Let me know if I can help in any way/answer any questions!