Weaning off IVIG
Amelia had her last IVIG about 6 weeks ago now and we are hoping that she won't need anymore. She has been having IVIG every month for nearly two years now, so it is a great relief to think that it might end soon.
The last month had been the best since she got sick. Amelia was totally normal behaviourly for almost a whole month. Her body is slowly but surely recovering from the steriods, she is losing about a kilogram per month and she seems to be getting her muscle tone back. Our hairdresser even said that she could see a mark in Amelia's hair from where she stopped taking the prednisone. Her coordination is much better now, today she learned how to ride her bicycle without training wheels.
Unfortunately she has deteriated a bit over the last few days. She has been having more and more periods of mania where she is extremely happy, bubbly, chatty and gradually more crazy until she gets repremanded and then she suddenly becomes depressed and tearful. She was so bad tonight, with two or three manic cycles, and at the end of the last one she actually said that was so sad that she wanted to die. This was a terrible shock for Kara and I to hear. We had just been getting used to her being normal and now she seems to be going backwards.
We are just starting school holidays which is often an unsettled time for Amelia anyway. We also started giving her fish oil a few days ago which may be confusing things even more. The plan for now is to stop the fish oil and hope she settles down. If the behaviour continues we might have to get another IVIG infusion, but Amelia hates the procedure and since she has been told that she won't need another, it will really upset her to have to go back to the hospital.
The last month had been the best since she got sick. Amelia was totally normal behaviourly for almost a whole month. Her body is slowly but surely recovering from the steriods, she is losing about a kilogram per month and she seems to be getting her muscle tone back. Our hairdresser even said that she could see a mark in Amelia's hair from where she stopped taking the prednisone. Her coordination is much better now, today she learned how to ride her bicycle without training wheels.
Unfortunately she has deteriated a bit over the last few days. She has been having more and more periods of mania where she is extremely happy, bubbly, chatty and gradually more crazy until she gets repremanded and then she suddenly becomes depressed and tearful. She was so bad tonight, with two or three manic cycles, and at the end of the last one she actually said that was so sad that she wanted to die. This was a terrible shock for Kara and I to hear. We had just been getting used to her being normal and now she seems to be going backwards.
We are just starting school holidays which is often an unsettled time for Amelia anyway. We also started giving her fish oil a few days ago which may be confusing things even more. The plan for now is to stop the fish oil and hope she settles down. If the behaviour continues we might have to get another IVIG infusion, but Amelia hates the procedure and since she has been told that she won't need another, it will really upset her to have to go back to the hospital.
posted by James at 21:35
0 comments
