We live in Texas, USA.
Greta was 8 when she got ADEM and is now 11 years old. We consider ourselves greatly blessed because we got sent 3 hours away to a Children's Hospital in Dallas. This particular facility has one of 2 active "teams" that work with rare demyelinating diseases. Greta was diagnosed, treated and released within 10 days, 5 days being given tremendous steroids and being monitored. She got her vision back in her left eye before we left the hospital.
At Dallas Children's Medical Center, they have different floors based on your situation. Greta ended up finally on the neurology floor. Each day she had visits from the neurology team, the ophthalmologist and a pediatrician specializing in demyelinating diseases. Once released, she was sent for an "overview" at a neurology clinic, attached to the hospital. She saw the same pediatricians and a technician trained in various eye examinations. This is where she also met the representatives from research into these rare diseases and a social worker as well as the neuropsychologist.
Dallas Children's has an "aggressive" program for their ADEM kids. They are seen every six months for the first two years. Then once a year for three more years. If there are no recurrences or other issues, at the end of the total of 5 years of monitoring the child is "released." At each of these check ups, Greta sees folks from the entire team. They always do them on Fridays and that's the day all hands are on deck. She sees research and gives blood for studies. She sees the pediatrician and goes through testing of reflexes and sensations, she repeats eye examinations. She gets tested by the social worker to see if there are any special needs Greta may have regarding schooling and she always sees the neuropsychologist - all in the same day. A team effort.
Greta has also had a separate all day testing and evaluation by the neuropsychologist that ended up giving us a list of possible problem areas for Greta and suggestions on how to help her in the home and school environment. We of course shared these recommendations with anyone directly working with Greta, her teacher, her principal at school, her youth program director at church.
Counseling helped some, but the neuro was very specific, she wanted Greta to see a counselor that only worked with children. That put us in a predicament due to our rural area. Finding a children's counselor that is a good fit for Greta hasn't been easy. We are currently taking a break from it and working on the equestrian therapy. It is a 40 minute drive for us once a week, but it is worth it! Currently, insurance companies in the United States aren't required to treat equestrian therapy as necessary and therefore insured. The PATH certified facility she rides at has a scholarship program that Greta rides on. This therapy has been the most consistent in helping her. She still has her moments, but we are slowly learning to deal with them.
Greta also delves quickly into the "I'm the most horrible person ever" mode when she gets corrected. The neuro says this can sometimes happen, where the patient over reacts to any form of correction. It has to be done very carefully. The other main issues we deal with that are common for ADEM kids/brain injuries: being very literal. We have to explain figures of speech to her many times. Decreased math skills. She is in 5th grade but she started out doing 4th grade level math. She has finally caught up to 5th grade level now towards the end of the year. Extremely fearful. After 10 days in the hospital giving blood and having IV's and spinal taps and MRI's - Greta is very distrustful of medical staff at first. Whenever she is sick, sometimes she asks if she is going to die. She is terrified of doing certain things in certain situations by herself. Finally she angers easily, has trouble controlling her emotions at times. One thing we did get out of counseling is for each person to share something from there day that was frustrating, happy, sad, angering, exciting. This helps Greta to see that she isn't the only one processing emotions and other people have the right to express theirs. She cannot have all the emotional container for the entire family - she has to share.
Lastly (sorry this is so long), Greta behaves best when her specific needs/joys are met. She loves games. When we play a game with her and get her brothers to play along as well, Greta is much more calm and bearable for a few days. When we neglect this desperate need of hers, she becomes short tempered and angry and difficult to work with. A happy Greta is much easier to deal with.
much our house. The issue of ownership of responsibility is a huge one our daughter has had for a long time. I have never quite been able to get to the bottom of it but it seems to be something along the lines of 'If I say I was wrong it means I am a bad person.'. Even if it flys completely in the face of logic, she will say it is not her fault. The 'embarrassing' bit with fault admission really hits with what is going on with her.
My wife and our daughter are currently in Japan - where we had to go to get a decent set of testing done and a diagnosis. A hospital here had her in the mental health system, and they just didn't work at all. The hospital there have her off most of the psych meds and now have her on Ablify (given to autistic kids for irritation and anger) and an ADHD med to couter the intense restlessness that the Ablify brings. She is a lot calmer in terms of the irritability and rages. She has not gotten to that point for a few months now (whereas it was daily before). However, she has bee in hospital, so when she comes home in a couple of weeks, that whole 'safe to explode' at home issue might come again. I hope not.
We have not yet seen a neuropsych, but hope to get on to one when she gets home. I am also interested in what types of therapy/professionals you have been involved with to try and assist your daughter.
Where do you live? We are in Australia. Perhaps there is a difference in the systems where you live and where we live, so we might get easier access/no access to some avenues of help.
I really appreciate you sharing your story.
