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 She is interacting more with her peers at preschool, she is talking in more complex structures and a lot less withdrawn.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.
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.
posted by James at 21:34
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