Help with rehab at home after acute phase of autoimmune encephalitis for my 16 year old

[Cat29red]

I am mum to a 16 year old daughter who has recently been diagnosed with autoimmune encephalitis. After several weeks in and out of A&E and several other departments, where they thought it was psychological, we were referred to the neurologists by the psychiatrist who after several tests diagnosed AE encephalitis. My daughter received treatment of steroids, IVIG and has just completed her second dose of Rituximab. This has been a very difficult journey so far but we are now finally home to continue the rehab which we are currently getting no support with so if anyone that has experienced anything similar that could give us any help/ideas, we would greatly appreciate this.

[kitnkaboodle]

Sorry about your daughter. Which antibody does she have?

[Cat29red in reply to kitnkaboodle]

Thank you she has anti-NMDA Receptor encephalitis

[Tuesando]

This is tough. All of us on this board know that. Patience is your best friend and trust me when I say it will get better. I’m glad you daughter was diagnosed. She must had felt very isolated. My husband had autoimmune encephalitis now almost 4 years ago. I would say 2 years marked a turning point for us. By then I saw significant changes and a life that resembled normality. Lots of support and love is still needed but life has found an equilibrium.

When people said 2 years to me back in 2020 I thought it sounded like a life time, but time passes and as I said patience becomes your friend. I hope you daughter has a speedy recovery and I’m glad she finally got diagnosed. From here it goes upwards.

[The_Bass in reply to Tuesando]

I couldn’t agree more with this. Two years, especially those first two years, are so important on the road to recovery and the road to a new normal.

I spent almost four months in hospital – it couldn’t have been much worse – but I did recover and I also appreciate a lot of things much more than I could have ever imagined before.

Wishing you all the best Cat29red . I hope someone from hospital can visit to help your daughter find her way back into her life again or maybe Encephalitis International can help? Worth a call.

[Cat29red in reply to The_Bass]

Thank you 💕

[Cat29red in reply to Tuesando]

Thank you 💕

[alpappy]

My heart.goes out to you. Luckily my ai encephalitis was diagnosed very fast I received two doses of retuximab and it saved my life and reversed the acute phase of the disease I had no real side effects from it and was on steroids at the same time. Long term I have some good phases and relapse that has no treatment. My memory from that period until now is very poor with total wipeout every few months that last upto a week. that treatment eas the turning point in the disease. If you want to ask or talk to me I am always happyAll the best

Dr Alan Papert

[Cat29red in reply to alpappy]

Thank you so much for your response, I really appreciate any help. My husband and I just want to support our daughter the best we can. Do you think it's worth having a neuro cognitive assessment so we have a baseline to work with?

[alpappy in reply to Cat29red]

Hi Yes I do think a base line is worth getting For me each time I have a stressful period my recent memory gets wiped it ...I dont eat dont sleep I do get back to sort of normal but those lost memories are gone for good My neurologist in NZ ( ex Oxford unti) says I am only the second case he has ever seen with NMDA enceph and says as long as each time my recovery leaves no long term deficit that is a good result recently I caught mild covid and that set off a two week bad period I also have lost smell and non primary tastes...It has receovered but not much What helps me is trying to get 6 hours of good sleep a day I take zinc( anti oxidant) daily as well as vit b12 And an MRI brain scan each year to monitor changes( so far none in mRI)

Use a phone to write to do lists all the time and use the photo app for memories tha are sorted date wise Else there is not much help anyone can offer I spoke to a top nerologist in Sydney and will see him soon and let you know if he has anything else to add He said what I have in not dis similar to rugby players with repeated head injuries and may have something to suggest Hope that helps but am happy to chat anytime Been 7 years now Lots of ups and downs and I have access to the best drs and radiologists around!!

Wishing you all the best

alan

[Cat29red in reply to alpappy]

Thank you so much Alan, this information is really helpful. I'm starting to feel that groups like these will help us more than anything the NHS can provide for us. I would love to keep in touch if you can recommend anything else from your future consultations with your specialists. Thanks again,

Take care

Catherine

[lw1990]

Hi Cat29red

My mum was diagnosed with AE Encephalitis in April 2022. She was very unwell for over a year .

I was shocked to hear from her OT when she was initially in hospital that there would be virtually no support for us when she came home. Due to my mum been so unwell at home , we had to make the extremely difficult decision for her to go back to hospital to enable them to find her a suitable rehabilitation hospital . That was the turning point for us .. my mum spent 8 months in a neuropsychiatric hospital which was just the best care and made such a huge difference to her recovery . They arranged any support for us we may need when she finally did come home , but luckily she had recovered well by this point and just needed our love and patience .

I do hope you can get some support . Sometimes I think being pushy is the only way of getting somewhere these days . Do contact the encephalitis international if you need support / advice because they have been a great support to me when I needed it most .

It can feel like a really scary , lonely time for everybody involved . Nobody else seems to understand and you worry constantly. Just know that the recovery can be extremely slow and painful for a while . I never imagined that my mum would recover again for many months . There is a turning point so please keep the faith .

[Cat29red in reply to lw1990]

Thank you 💕

[Harper1]

I'm sorry about your daughter.

I'm the mother of an 8 year old boy who was hospitalized with AE about 2.5 years ago. We also received surprisingly little support after leaving the hospital--it seems, in general, once the active inflammation is under control, patients and their families are left to deal with the fall-out of encephalitis (namely, acquired brain injury) on their own. Rehab was uncharted territory. I learned a great deal from taking part in monthly Zoom calls for parents of children with encephalitis, put on by Encephalitis International (they are actually based in the U.K.), but mostly we learned through trial and error, over time. Some things I know now I wish I knew at the beginning of our journey:

1.) As others have said, the recovery process is often extremely slow.

Our first 6 months out of hospital were pretty awful, to be honest. In fact, the entire first year was pretty rough. For the first 6 months or so, my son alternated between zombie-like behavior and violent fits of rage that we could only manage with Ativan. However, it got dramatically better, albeit very slowly. (Today he is off all meds!) This seems to be the pattern for most. Do not be downhearted if your daughter takes months (or even years) to regain what you consider to be very basic life-skills. My son was out of kindergarten for a solid year before he was well enough to return, and when he did return, he could only handle a few hours at school without becoming mentally exhausted. We eased him in: a few hours to half-days, to full-days.

2.) There will be good and bad days in terms of recovery progress.

Sometimes it will be one step forward and two steps back. You may feel hopeless at times. Look for an overall upward trend, measured in months, not days.

3.) Pushing too hard in the early months can be pointless, even counterproductive.

I strongly regret putting my son in speech therapy a month out of the hospital. He learned nothing. At that stage he was still too overwhelmed just making the car-trip to the SLP, and by all the unfamiliar sights and sounds of the clinic.

4.) Sometimes there's not much you can specifically do, other than letting Time, Kindness, and Repetition re-establish neural pathways.

I am not a patient person. I like taking concrete action to solve problems. That approach did not help when it came to my son's AE recovery. What he needed most from me was patience and kindness. I had to learn to wait.

5.) You may not be out in public very much for the first year.

This may be different for an older child. (Or not?) Even something as simple as going out for ice cream was hard for us in the first half-year to a year. He just couldn't handle it and would act out accordingly.

Wishing your daughter all the best in her recovery.

[Cat29red in reply to Harper1]

Hi Harper1 This is really helpful, thank you so much. Like you, I like to get things sorted quickly but I'm guessing the common theme from all the helpful responses is patience!

Thanks again 💞

[The_Bass in reply to Harper1]

Harper1 – I totally agree with you. It really takes time and the need to keep digging for patience.