Encefalitis

serena

Ella,

I would try ringing the Encephalitis Society if you can find time. They are tremendously helpful, and I think they can put you in touch with another parent who may be able to help you.

I think the symptoms and recovery pattern can be quite different depending on how the illness progressed.

My son had long spells of staring into space, and also spells of not recognising me at all. We had days where he struggled to accept that he was in Thailand (not surprisingly, he went to China, fell ill and woke up in another country). He was hypersensitive to all stimuli, so I was unable to touch him or hug him for quite a few weeks, and he jumped like a baby at noises.

In many ways, we were lucky that we were abroad, as the early stages were recognised very quickly, and he was given intravenous anti-virals immedaitely on admittance to hospital. Encephalitis is more common in China.

He had to learn to eat, drink and walk etc again, and the physio department were fantastic - he had two or three hours a day.


Once we returned to the UK, I found that I was the one who was in fact the expert - the consultants we saw had only seen one or two cases, and one of the registrars had only come across it because his brother in law had it.

BlondeHeadOn

serena wrote: »

Ella,

Once we returned to the UK, I found that I was the one who was in fact the expert - the consultants we saw had only seen one or two cases, and one of the registrars had only come across it because his brother in law had it.

I second this about the lack of knowledge in this country - I was not properly diagnosed for several weeks, and then the neurologist just told me "We don't know what caused this, and probably never will...."

It can have some very strange effects on behaviour, particularly while recovering, but these are almost certainly not permanent. Just remember that your son's brain has taken the equivalent of a big knock on the head, so there may be strange symptoms during his recovery - like if he had bad concussion.

It's all a part of this very wierd illness....

Hugs to you and yours, it must be very scary. Just remember, many people survive it with no or few after effects - I did!

ELLA

Hi all, thanks for the replies.....I have called the Encephalitis Society and now have my handbook.
My little boy is up and walking still but doesn't talk anymore and has moments leaping about the bed screaming still at the moment.......The doctors have decided to call up other doctors around the world and have now decided to start my little boy on a second course of Intravenous immunoglobulin - he had a course a month ago and he seemed to turn a corner and tried talking. I pray to god this will help him.

serena

Hi Ella,

I check everyday to see if you've posted, although I know that you will be very busy with your son.

I would take each day as it comes, celebrating each little step towards recovery, but not getting too upset if it seems like tiny little steps. They will add up.

I'd also say take good care of yourself, and take a little time each day for you. The hospital in Thailand had a roof garden, and I spent five to ten minutes there every morning and afternoon, often when DS was being washed or was asleep. You need to keep strong.

One thing that seemed to help DS was being given a mild sedative - he'd been given them to have the scans, and they noticed that he was more 'with -it' afterwards, and then prescribed a low dose for the following month, gradually tapering it off when he was getting near to discharge.

Could the screaming fits be due to headaches? I know that headaches and headpain (not apparently quite the same thing) can occur after the original illness.

It's good that the doctors are seeking extra advice. The Encephalitis Society have several neuroconsultants that are involved with the charity, and they may be able to give advice. Also, the society has the largest body of research information in the world - it may the only source of such informnation, so I'd certainly encourage the team to go there if they haven't already.

gettingthereslowly

Ella, Just wanted to wish your son a speedy recovery! Lots of hugs and well wishes to you and your family xxx

sams247

I had viral encephalitis about 15 years ago, I was taken to the stroke ward as that was what they thought was happening to me, and fortunatly (for me) a Dr there recognised what it was. There are many things I don't remember about that time, but the headaches and the confusion, the 'lost' feeling are all very clear. I was an adult, so a young lad would find this confusing and possibly react accordingly. The Dr I saw said two things that honestly helped me in the years ahead. One - you have lost nothing, you just don't remember where it is (this as I had to relearn to walk, talk, read, etc etc) and Two - it will take a long time to heal, maybe 10 years, but you will get there. Thsi helped on the days I got frsutrated. I went on to develop ME, but now I am fully recovered from both....... well, I do get tired, and when I am tired I don't store memories too well, and I forget words some days. But all in all I never thought back then that I'd be here now, typing, living a normal life. Have hope, have patience and take corage and advice from the society.

ELLA

Hi again, thanks again for all your the replies........My boy started his Intravenous immunoglobulin on Friday and finished his course on Tuesday, I think he went through 4 canular's! While having the treatment he smiled and laughed for the first time, weather that was down to the treatment or just him we don't know but he hasn't done that in 7 weeks so it was a good moment.

The doctors have decided to give him another course of it in 3 weeks and maybe a plasma exchange, we have been researching and someone from America from a medical website has told us about a new form of Encefalitis that has been found - we showed the neurologist team who have never heard of it! They have taken some blood and will test for it, it was lovely that they thanked us for bringing it to there attention.
I just hope this IVIG treatment will keep doing it's stuff!

ab7

Hi Ella, just wanted to send you a :grouphug: I've no experience of this illness, but know how worrying it can be.

Glad to hear you've had some posititive results! Makes those long days seem worthwhile.

ELLA

Just thought I would write an up-date for the above people, James finished his IVIG treatment a few weeks back and has become a lot calmer but still in a fog like state, still not knowing who we are, where he is and what anything is anymore!
I have concerns with his hearing as he responds to nothing, the doctors think there is nothing wrong and he is just in his own world at the moment........
He has been for the last few day's waling around touching EVERYTHING, even people's face's and hands! The doctors have said this is a sensory stage and all E sufferer's go through this.
He is due some more IVIG treatment on the 30th August and then will continue every 4 weeks with them, I just want him to know us again and have his memories back, it's so so hard to see him like a zombie..