Adolescent child diagnosed with ADEM - Aggressive behaviour a major feature - Any suggestions?

Lol I don’t even realise I’ve started swearing until afterwards, I think whoops I’ve done it again but I guess your right have to look at the funny side of it lol.

Hele I know what you mean my
Anxiety is terrible but getting slowly better. I just wanted to be on my
Own.


hi there - i'm interested to see that you live in Aus, but are seeking treatment in japan, how did it go, its hard to find support or a proper diagnoses ? in australia - i am in queensland - sunshine coast - my daughter 14 is thought to have ADEM, its been going on for 4 months - but dx in july last month - any info/advice would be much appreciated thanks
Flower said:

Wow, you have described pretty 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.

Yes, my wife is Japanese, so luckily we had that option. We originally went there because we thought we were dealing with another illness, and we just could not get any traction with doctors locally. In Japan they said ADEM, but no treatment available, because there was no active infection. They recommended yearly follow up MRIs.

Coincidentally, a friend of mine has recently been diagnosed wit ADEM. He sees a specialist in Melbourne, Dr Churchyard. If you have the money, I imagine you can get your daughter seen. We don't, so it is the public system. Either way, it is a long wait.

thanks for the reply, yes we are on private and have seen 2 neuro's - both have said no treatment, which kindof surprises me as every usa group i read the 'standard' is steriods and ig ...'? (i can only think because its private) also our son had ig, for pneumonia 17 years ago when we were living in south africa, the neuro here couldn't believe that ....? he was much better after having it .... it worries me that we 'doing nothing' & the inflammation flares up again ? but your 2nd opinion in japan for ADEM does give me a bit of comfort, their health system is very good ......?

Flower said:

Yes, my wife is Japanese, so luckily we had that option. We originally went there because we thought we were dealing with another illness, and we just could not get any traction with doctors locally. In Japan they said ADEM, but no treatment available, because there was no active infection. They recommended yearly follow up MRIs.

Coincidentally, a friend of mine has recently been diagnosed wit ADEM. He sees a specialist in Melbourne, Dr Churchyard. If you have the money, I imagine you can get your daughter seen. We don't, so it is the public system. Either way, it is a long wait.

Yes, I think steroids or IVIg. However, there has to be some pretty solid evidence before they would recommend that I think. In our case, the ADEM diagnosis was 2 years after the time we think there was inflammation. They did a lumbar puncture while in Japan as part of the range of testing. I believe that if there was a current infection, signs of it would show in the spinal fluid and at that time there were no signs of infection, therefore, no point in treating with steroids or IVIg. The MRI showed white spots on the brain, which the neuro said was demyelination. Basically, there is damage, now you got to live with it.

Yes, the Japanese health system is very good. I rate it highly. If anything, they over treat, but then they do have the highest life expectancy of any nation. When I lived there it was not unusual to go to the doctor with a common flu or cold and be put on a saline drip. In our case, over testing and treatment was what was needed. That and a doctor who was prepared to stand up and say 'I will find out what is wrong with your kid, and I am prepared to look outside my box to do it.'

Here in Australia it feels like a constant battle to get anyone to do anything. Heaven forbid if it is outside of their field that they try to contact someone who can look at it or educate them. If I have learned anything, though, it is to trust your gut as a parent and don't be worried about kicking up a stink to get where you need to go.

thanks yeah - we've got that feeling already - 1 month in lol - 2 years for you to get a diagnoses ! - i guess our 5-6 months not so bad, but then i'm not 100% sure why they 'picked ' ADEM - as opposed to anything else, i mean shes got no brain lesions - just x4 on spinal cord.... no lumbar puncher offered - its just wait and see, which has my heart in my mouth daily - i hope you get some answers for your daughter .....my sister passed away in sgp with cancer and her japanese doctors were brilliant, as was the sgp health system, MRI's 20 minutes after doc writing it up etc.... sigh

Flower said:

Yes, I think steroids or IVIg. However, there has to be some pretty solid evidence before they would recommend that I think. In our case, the ADEM diagnosis was 2 years after the time we think there was inflammation. They did a lumbar puncture while in Japan as part of the range of testing. I believe that if there was a current infection, signs of it would show in the spinal fluid and at that time there were no signs of infection, therefore, no point in treating with steroids or IVIg. The MRI showed white spots on the brain, which the neuro said was demyelination. Basically, there is damage, now you got to live with it.

Yes, the Japanese health system is very good. I rate it highly. If anything, they over treat, but then they do have the highest life expectancy of any nation. When I lived there it was not unusual to go to the doctor with a common flu or cold and be put on a saline drip. In our case, over testing and treatment was what was needed. That and a doctor who was prepared to stand up and say 'I will find out what is wrong with your kid, and I am prepared to look outside my box to do it.'

Here in Australia it feels like a constant battle to get anyone to do anything. Heaven forbid if it is outside of their field that they try to contact someone who can look at it or educate them. If I have learned anything, though, it is to trust your gut as a parent and don't be worried about kicking up a stink to get where you need to go.