Seven-year-old girl with autoimmune encephalitis help

[FernandaDuval12]

Hi, I'm Fernanda, mother of a girl with autoimmune encephalitis. We live in Italy. Is there anyone here who has recovered from this disease? I am really scared. It all started in April. In May, everything seemed fine, but now in June she has relapsed. She has started Rituximab and needs to have 4 infusions. She has already had two, and there are two more to go. Thank you to anyone who responds. I am afraid of losing my daughter. I am so scared.

[EncephInternational Partner]

Hi Fernanda, I am so sorry to hear about your recent experience. We have a support line and virtual support groups which may help you. Please don't hesitate to get in touch. encephalitis.info

[Heathercb]

Hi Fernanda

I am really sorry to read about your daughter . In June 2022 my daughter - then17 yrs - had 4 seizures within a 2 week period. She was admitted to Southampton Children's Hospital UK and was tested positive for NMDA Autoimmune Encephalitis.She was on steroids and had 3 lots of IVIG over the three months she was in hospital. She suffered paranoia and hallucinations and also stopped speaking for a while. She improved greatly after the third IVIG and after spending her 18th Birthday in hospital she was discharged October 22. She is still a little forgetful but is more or less 100% better. It was a tough time for her and is a shocking diagnosis to be given but she is now getting on with her life. I wish you and your daughter all the best - I hope this positive story helps

[Gandalf2]

Hi Fernanda, I'm sorry to hear about your daughter's situation. I developed AI encephalitis about 4 years ago, was put in a coma to stop seizures and suffered brain damage due to the action of my immunity attacking my brain. I'm on mychophenalate to stop seizures and close down my immune system.

Recovery is slow and my setbacks are caused by repeated bacterial and viral infections. I'm not a medic but I guess your daughter's progress will depend on her meds, her stamina and other elements like diet, exercise and rest.

Support and rehab may be available via your doctor. I'm in the UK so have had help (after a long wait). Each case is different so I can't say what is appropriate for your daughter. I have no sense of taste and never experience hunger, so mealtimes can be a struggle.

The Enc site has lots of info and Heathercb's comments pretty much say most of what can be said. I'm 74 and besides AIenc also suffer from osteoporosis, thyroidism, anxiety, PTSD and panic attacks. So my meds are a variety and can't be much of a help to you.

My main usefulness is my record of 4 years of recovery, gained with mental and physical exercise, good diet and rest. I still have very little short-term memory, forget what I am talking about before the end of a sentence and have to keep a diary. I guess your daughter may have fatigue and quite a short attention span.

You may be able to connect her with her previous interests. Affection and consolation via a pet may help but looking after a pet may be beyond her. I was relieved when my elderly goldfish and cacti died, because the sustained routine of looking after them was too hard! Keeping a bird feeder stocked up and replenishing the birdbath is about my limit now.

Best wishes from G2

[alpappy]

Hi Please dont be scared I had the same condition and retuximab sorted me out it took a few doses to start to work I am now alive 8 years later but have lost memories around that time and when I get stressed i have a down day with memory loss But it comes back the most important thing is is find why the encephalitis started...in my case a cancer that had come back after 30 years....full body cat scan a must Be strong I am sure all will be OK anything else you need to ask please do Dr Alan Papert New Zealand

[alpappy in reply to alpappy]

Once recovery starts I take Zinc asaxanthin and vit d Seems to keep the relapses at a miminum Al

[StargazerDogMom]

hi Fernanda,

My heart goes out to you. My daughter had anti-nmda encephalitis and it sounds like your daughter has the same thing. She was treated with Retuximab in January 2023 with her second dose a few weeks later. My daughter is very atypical in that she was able to walk talk and everything before the treatment. But, she is completely back to normal. We are still in the process of figuring her out because her symptoms and her recovery of symptoms (before treatment) are rare.

[Paula-38]

Hi FernandaDuval12,

I had a different type of encephalitis (Herpes Simplex ) the day after my first birthday, so I was younger than your daughter.

However, I'm so sorry to hear about your poor daughter. My mum (who passed away 5 and a half years ago) suffered from anxiety and depression since after I had encephalitis, and the fact I was the only daughter she had, no other children just me. She always thought why did this have to happen to "my" daughter? Would you like to be in contact with me via the Connection Scheme, FernandaDuval12?

I'm sure I could take you through what my parents and I went through in more detail in more time than we have on here.

So I sincerely hope that your daughter gets the right treatment at the right time. I wish her the very best of luck with her infusions, and if she relaxes while she has her infusions that could help her to become resillient, like I was.

I know I haven't had them but, I have been on a drip in hospital with Status Epilepticus, and my parents said that the staff at the hospital said that I was" a little fighter."

However I did not relapse, it was a more kind of "work in progress " very slowly though. Every type of encephalitis is different for everyone and "everyone is different". My mum was frightened to death when I had encephalitis, so she and my dad told me. She thought the exact same as you are now.

This played on her mind all through my childhood into my early adulthood she used to still think I was in when I was in my 20s, stuff like that. I'm a lot older now but I'm sure with that knowledge my parents experienced and personal experience I could be of some help to you and your daughter.

Please don't hesitate to ask me any questions at all I'm only too happy to answer your worries.

I enjoy helping people. It's interesting to know someone else who had it as a young child. I always seem to meet those who were diagnosed as adults, no problem, but someone who has experienced it at a younger age would understand what I'm talking about. Like school life after encephalitis things like that. I hope your daughter also gets the right schooling at the right time.