My 21 year old brother has HSE. Mom isn't coping, but I think he seems to be progressing well? Advice/support?

[heidichanel]

My little brother has had an unknown autoimmune disease since Sept 2017. Something with his pituitary gland, although with a very unhelpful GP we haven't been able to get very far. Overall he'd been doing well.

On the weekend before the 15th of March he started to get a fever and low appetite, and on the Sunday morning was tested for covid. Later that night I remember him telling me he was actually feeling a lot better.

Next morning (15th) mom had to take him to the ER, where he stayed for 4 hours and had the doctor send him home saying he "probably had covid or a virus" and that his fever that spiked to 105 wasn't dangerous. Later that night he had a Grand Mal seizure, rushed to the hospital. Highest temp that day was 107.

That night his COVID test came back positive, but it ended up being a false positive. He was tested twice more consecutively and they were negative.

Halfway through his treatment (I don't remember which day he started Acyclovir, it was very soon after being admitted) he was put in the Cancer Palliative ward to get him off of the COVID floor that he was on at the time. It seems that he *actually* got COVID there, they're doing investigations. Currently he's COVID positive. He has an unknown variant, but it's apparently a mild one and hasn't shown any symptoms yet.

Since then he's had a lumbar puncture, a few MRI's, CT scans and EEGs. He was sent home once, and then that same day was brought back in by ambulance.

For the last few days he's been back on the respiratory floor and had an AMAZING charge nurse who was so kind to us calling all of the time. My brother seemed better than ever, had a good hour long call with us yesterday. I think he has 9 days left of the 21 days for Acyclovir. Last night he was even texting me as normal.

Now today, he says his head hurts again (it's on and off, he's on Tylenol + advil) and says he doesn't want to do a phone call. My mom is very upset about this, but from what I've read, this process is very very slow. She keeps saying she wants him to be normal and not in pain.

My mom has childhood trauma and PTSD from my dad's suicide and can incredibly emotional and inconsolable. It's been very hard (I'm the 23 year old daughter) trying to manage this feeling about my brother AND deal with my mom's grief. To be honest I also have a hard time managing my emotions and I have sky high anxiety, but I feel like I have to be strong for everyone. It's making me a bit irritable and I feel bad about it.

So far my brother's memory is decent, he remembers most things, but his sense of time is off and will forget on the occasion (like if he finished his dinner completely or not). His personality is mostly normal to me, he has a great sense of humour actually, especially yesterday. The only thing is he's getting really bad headaches.

Currently my fam is in isolation, we got a covid test last week that came back negative, but we're going again on Wednesday. Personally I don't feel well, but it's not horrible. They want to send him home maybe tomorrow and it feels like a sh*t show because we're scared of him either getting complications from COVID, or having another instance where he needs to go back.

They say they won't keep him any longer because he's doing well and can rest better at home. I see this as a good sign, but my mom is inconsolable.

Does anyone have advice or comfort or insight? I'm desperate, I feel like I'm living in a nightmare.

[RainbowBrie]

Hello 👋It sounds like your brother is at the very beginning of his journey. He is very lucky to have you all around him to support and want to find out all about HSE.

I had HSE in December 2019 and there are patches of memory that still hasn't returned.

What I can say from what I remember though is your head hurts alot from encephalitis anyway - and I mean ALOT. It felt like my head was being squeezed in a vice. Also the Acyclovir is known to cause headaches and nausea. Which I had particularly bad towards the end of treatment - I am guessing my dosage was high in my body by that point. Even pain relief did very little to remove the pain completely.

For a very long time afterwards I was also very sensitive to noise and light. Telephone calls were quite over stimulating. I could do things in slow bursts but would then need to rest. If I over did it I would be wiped out for days. It is all about finding the balance and what works better for your brother. I actually communicated with people via email at the beginning. Because I could read it when I was able and then reply in my own time. I then built up to texts, skype and then face to face.

Everyone recovers at their own pace. It was only in January this year that I returned to work.

There are so many lovely people in this community - keep reaching out for help and advice.

Brie

[heidichanel in reply to RainbowBrie]

Thank you for this, the first person perspective is nice. He agrees that it feels like a vice on the head. They're putting him on another 21 days of Acyclovir but he's home right now.

Is it normal (if you know) to have had hallucinations or half-dreams while being on the meds and sleeping? He's lucid but he's trying to tell me he saw a meteor fall down past his hospital window and I told him probably not and that it might have been a dream and he's insisting he saw it.

[RainbowBrie in reply to heidichanel]

I hallucinated at the beginning before I was on the medication. Before I went into hospital. I couldn't see people who were right there in front of me. I became very confused and forgetful. I showered fully clothed, forgot how to lace up my shoes. I didn't know where I was at times. When I was admitted to hospital I thought it was wed 4th of Dec when it was actually Fri 6th. I also thought they were trying to poison me and tried to rip the cannula out several times.I think the hallucinations and confusing are all part of the encephalitis. Mine stopped after 6 days on acyclovir.

[heidichanel]

Thank you for your input! He's home now (just got home) and they're putting him on another 21 days of Acyclovir. I did email the Encephalitis Society! I'm hoping they'll reply soon.

[alpappy]

I had this 4yrsrs ago it does get better with time but memory lapses remain and I have lost taste and smell. I need 6good hours of sleep a night else I don't function properly but hang in there there is light and the end of the dark tunnel dr alan papert

[Ocean96]

Hi heidichanel

Firstly, I am so sorry you and your family have been going through such a hard time. Things sound really overwhelming right now and it sounds like you are carrying the weight of the world on your shoulders.

I'm actually 24 myself and I can't imagine carrying all of that responsibility on my own. Even though life seems chaotic right now - it's so important to take time out for YOU. Even if its 15 minutes of meditation or a nice long bath - It is so important you rest your body and mind!

I am so sorry your brother has been messed around in regards to his medical care - something I have experienced too. I have found the medical community is not very well educated in encephalitis and how to treat it. My family really had to advocate for me and I think that would be my best advice in regards to your brother - You and your mother - Just check into the hospital every day making sure they are keeping an eye on him. Also, you have reached out here which is amazing!

My main advice would be to contact the encephalitis society - encephalitis.info/support

They will support and guide you throughout all of this. You are not on your own!

I am so glad you have posted and reached out. Please continue to do so!

You are doing great !!

[Paula-38]

Hi heidichanel,

I'm so sorry to hear about your poor brother.

Let me inform you a bit about my LifelongEncephalitisJourney .

it was just after my first birthday party (back in the 1970's) when I caught Herpes Simplex Encephalitis, apparently I had been passed around from person to person and everyone was hugging and kissing me so my parents informed me that I had a high temperature, I wouldn't take my bottle, I was being sick, I had a headache and they thought I had the flu until I started shaking (apparently I was having my first grand mal seizure) so I was rushed into hospital and they gave me blood tests, a CT scan and EEG's plus a lumbar puncture, MRI's weren't out.

Then they diagnosed me with Viral Encephalitis and Status Epilepticus at the same time, there was no acyclovir out in those days so I was treated with antibiotics and three epilepsy medications through a drip, I believe I was in for six weeks. I certainly don't remember being in there or even getting Encephalitis but my life had only just started so I probably had nothing to remember.

If only my Mum was here with us today I'm sure she would have empathised with your Mom SO much, she was panic stricken and so was my Nan, but my Dad had to rush home from work in an emergency to see what was going on and then he was all worked up.

Yes it was a nightmare for them, so they told me but there was no Encephalitis Society out in those days.

I can well imagine what you and your family are going through now.

I think why they don't want to keep your brother in hospital longer than is necessary so they say nowadays but I don't know whether he would be better off at home or not if he is able to have medical professionals coming in to see him regularly and/or hospital appointments but there again in this pandemic waiting lists are so long and not being allowed to mix with another household indoors doesn't help with getting access to treatment but to prevent the spread of COVID19 what your poor brother has. I really do hope he gets the right treatment at the right time.

I wish you and your family the best of luck!