Steady improvements
The last week has been marked by very positive consultations with our oncologist and neurologist.
We had a meeting with our neurologist on Monday in which we had anticipated that we would set a date for the IVIG treatment, but after considering Amelia's progress we agreed that we would hold off the additional treatment for another week. Amelia has regained all of her coordination now, with no sign of opsoclonus, myoclonus or ataxia at all. The tantrums and bad sleep are still a problem, but the tantrums have become shorter and fewer. We are hoping that at this rate she will not need the IVIG at all, but if the symptoms don't continue to abate, we will start it.
We got the tumour pathology results from Amelia's oncologist yesterday and they were, as expected, good. There was no N-myc amplification (only one copy) which means the neuroblastoma cells are less agressive and hence there will be no need for any more treatment for the neuroblastoma. Unfortunately, there is no guarantee that the the cancer is completely gone so we will be booked in for a CT scan and an mIBG scan every three months for a while.
We have been working on Amelia's diet in an attempt to control her weight. When Amelia started the steriods she developed a very strong appetite and her weight went from about 21kg to 23 kg in a couple of weeks. We were told to try to remove as much sugar from her diet as possible to control the typical Cushingoid (named after Dr Harvey Cushing) weight gain associated with steroid use and we decided to take a Low GI food diet approach. This seems to be working well. She hasn't put on any weight over the last week. Amelia asks for high GI foods, but if they're not available she often won't eat anything, which makes me think that she's not really hungry, but just craving sugar.
We had a meeting with our neurologist on Monday in which we had anticipated that we would set a date for the IVIG treatment, but after considering Amelia's progress we agreed that we would hold off the additional treatment for another week. Amelia has regained all of her coordination now, with no sign of opsoclonus, myoclonus or ataxia at all. The tantrums and bad sleep are still a problem, but the tantrums have become shorter and fewer. We are hoping that at this rate she will not need the IVIG at all, but if the symptoms don't continue to abate, we will start it.
We got the tumour pathology results from Amelia's oncologist yesterday and they were, as expected, good. There was no N-myc amplification (only one copy) which means the neuroblastoma cells are less agressive and hence there will be no need for any more treatment for the neuroblastoma. Unfortunately, there is no guarantee that the the cancer is completely gone so we will be booked in for a CT scan and an mIBG scan every three months for a while.
We have been working on Amelia's diet in an attempt to control her weight. When Amelia started the steriods she developed a very strong appetite and her weight went from about 21kg to 23 kg in a couple of weeks. We were told to try to remove as much sugar from her diet as possible to control the typical Cushingoid (named after Dr Harvey Cushing) weight gain associated with steroid use and we decided to take a Low GI food diet approach. This seems to be working well. She hasn't put on any weight over the last week. Amelia asks for high GI foods, but if they're not available she often won't eat anything, which makes me think that she's not really hungry, but just craving sugar.
posted by James at 20:53
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