Irritability, sleep and Clonidine

Milly can be very irritable at the moment. She has good and bad days. Today she was quite normal, but yesterday she was really bad. We had our monthly apointment with our neurologist yesterday and we went to the hospital cafeteria for dinner after. Amelia had been very irritable most of the day and became increasingly uncooperative during the visit and in the cafeteria. She was constantly verbally attacking her sister Emma, complaining about everything and making unreasonable requests for junk food. She got so bad during the meal that I told her that I would take her straight home when she finished eating unless she stopped whining. She kept on whining so I committed to taking her straight home, as per my threat, and letting Kara and her sisters have a bit of peace while they finished their meals. I had driven to the hospital separately so when she finished eating I dragged her away from Kara, Emma and Sophie and headed for my car. She screamed at the top of her lungs all the way through the hospital, down the street, into the car and then for the next ten minutes as we drove along. I had to carry her half the way through the hospital (she ways 38 kg now), drag her down the street and force her into the car. I was expecting some do-gooder or police officer to stop me at any moment!

At least we have not seen any physical OMS signs since we weaned prednisone, so we are going to wait and see if the behaviour calms down. She has been irritable like this at various times over the last year and we can't tell how the IVIG or prednisone makes any difference.

We got some Clonidine yesterday and it seems to be helping a little bit, but she has only taken it twice so far (25micrograms at a time), so we can't really tell. At least today, the first day after we started taking it has been her best day in weeks and she went to sleep easily tonight.

Weaned off Prednisone

Well, it has been a long time between posts.

Not a great deal has changed since last post. Amelia's condition has been relatively stable, but we are still struggling with sleep and behavioural issues.

The big news is that Amelia has just been weaned off the prednisone. She has not had any for a few days now. We have been weaning for a few months now and her behaviour has been a bit unstable throughout the process, but it did not change significantly as the dose got lower. We had worried that we would hit a dosage limit where the OMS symptoms would come back strongly, but it didn't happen. Huge relief.

Most of the time she is a normal girl, but there are still a few 'OMS' moments. In particular she usually has trouble going to sleep and every now and again she gets the 'black cloud' over her and she is terribly irritable for a few hours. She is a very anxious child, but we don't know if that is steroidal, OMS or just her nature.

After reading the latest Pranzatelli research, We are trying to get some trazadone to help the sleep problems, but it is not generally available in Australia, so we are fighting a bit of a battle to get it. It is tempting to just buy it over the internet, but for now we are relying on our neurologist to get a special order through the hospital pharmacy. I wish we had trazadone two years ago!

Our plan now is to wait for Amelia to stabilise and then work on reducing the IVIG.