Weaning

I am very happy to report that Amelia has progressed very well over the last couple of weeks, to the point where we hardly see OMS symptoms any more. In particular, she is experiencing a lot less irritability. We are now going to try to reduce her steroids as fast as we dare. We initially reduced by 5mg and then by 2.5mg about once a month, but that knocked her around too much so we are now reducing by 1mg once a week. Overall, we have gone from 40mg to 29mg per day over about 3 months. The 1mg reduction seems to be working as the last reduction, a few days ago, didn't seem to have any effect on Amelia's behaviour like the earlier, larger attempts which made her behaviour monstrous for a few days.

One of the reasons that we are so keen to reduce the steriods is that Amelia is getting more and more 'cushingoid'. She now weighs in at about 28kg and she is still putting on 500 grams per week.

Wikipedia update

I have setup an area on the Opsoclonus Myoclonus Wikipedia page for doctors information. I wasn't sure if I should do this, but many people inthe OMSFamilies group encouraged me, so it is done. The page is attracting a lot of interest and if you look at its history you can see there have been quite a lot of people editing it now.

Note, for anyone who is a 'slashdot' reader, you might want to look at my slashdot post.
This post created a lot of interest in the Wikipedia page and about half of the edits happened after the slashdot post.

IVIG at Westmead

Amelia had her third infustion of IVIG (Sandoglobulin) on Thursday 8th September. This was her first treatment at Westmead and it went very well. It seems that things are done quite differently at Westmead to what we have experienced at Randwich, and it was a welcome change. Everything went to plan, so we got in at a reasonable hour and got home before bedtime too.

The treatment did not seem to have much of an effect on Amelia. In the week before, she had been very well and had almost no tantrums or 'OMS'ish behaviour, but in the week after she had quite a bad run. We think that the week was bad because she had two very short nights sleep and we also reduced the prednisone from 32.5mg to 30mg on Sunday 12th. Because the IVIG did not seem to have an effect, we are hoping that the OMS has gone into remission and the behavioural issues we see now are due to the prednisone. Most of Amelia's tantrums and outbursts are triggered by lack of food (or just the thought of it!) and they are made worse by lack of sleep, but every now and again she gets irritable for no apparent reason, so we are still not sure what is going on.

The prednisone is certainly having a big impact on Amelia's body. She weighs about 26.5 kg now and she has a typically round, cherub like Cushingoid face. We looked at some photos of her from a year ago when she was underweight (at about 17kg) and we nearly didn't recognise her. Apart from the weight gain, there are various other steriod side effects that could be happening in Amelia's body, so we are very keen to ween her as soon as we can.

Amelia's social behaviour has been improving a lot over the last few weeks. She is generally much less withdrawn and she is continuing to attend preschool normally. Her teacher, Chandini, reported to us yesterday that Amelia is quite normal in class now. She is doing her 'work' well and moving from task to task normally. Amelia is telling us more about the other kids in class too, and we think this is because she is having more to do with them. We had some friends over a week ago and Amelia really enjoyed their company. One or two weeks earlier she would have hid away in her room.

Melatonin is bad

The last few days have been the best for a long time. I don't think we have seen Amelia this happy and 'normal' for nearly a year. She hasn't even been sent to her room for a few days.

The contrast in behaviour between the last few days and the end of last week has made the current behaviour seem especially good. Last Thursday and Friday were two of the worst days we have had since Amelia was in hospital. As you can imagine, Kara and I were very depressed at the time because it seemed that the gradual improvements that we had seen since the treatment started were all lost. Amelia was irritable the whole time and constantly throwing tantrums that would last for up to an hour. At one stage she got so angry at Kara for some trivial reason that she was saying the most hurtful things she could imagine. She doesn't know any 'bad' language, but she still managed to upset Kara terribly.

The relapse co-incided with us giving Amelia 3mg of melatonin at night to help her sleep. For the previous week Amelia had been going to bed two hours later then usual and she was tired and getting more irritable, so our neurologist prescribed melatonin. The melatonin certainly made Amelia sleep better (in fact she was still sleepy the next day), but after the behavioural problems started, we were suspicious that the melatonin was making the OMS worse, so we posted a question to the OMSFamilies yahoo group and did a Google search. The results were startling. Melatonin is BAD for OMS. Lisa W. from the OMSFamlies group warned us about it and the warnings we found at various sites specifically stated that melatonin should not be given to children, people with an auto-immune disease or people who are taking cortico-steriods. I can't believe our doctor prescribed it! It just goes to show that OMS is so rare and obscure that we have to check everything ourselves.

The day after we stopped giving Amelia the melatonin she improved, and she has just got better and better since. She is interacting more with her peers at preschool, she is talking in more complex structures and a lot less withdrawn. We will have our third IVIG infusion on Thursday at Westmead, so it will be interesting to see if she improves more after that. Her speech is still a little mumbled sometimes and there are occational outbursts of irritable behaviour that have an OMS edge to them.

Amelia is sleeping better now, even though we have stopped the melatonin, so perhaps it did help set a good sleep pattern at least.