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