Our sweet PANDAS child is only 3 years old. Her longest exacerbation with PANDAS lasted 8 months. 8 months is a very long time when you are only 3. For that reason, John and I are question who the REAL A is. Is she the sweet, easy going infant we had from 0 – 9 months? Is she the somewhat temperamental toddler that emerged after the incident at 9 months? Or is she really this person we met once she turned 3?
After the IVIG, I think she is a combination of all of these people. I wanted to believe that the IVIG would return her back to the easy going personality she was as a baby. IVIG has been wonderful and has returned our house to a standard of living that is completely tolerable. However, we still have a child who has so many needs. And I wonder where this is coming from. Is this who she permanently is now? Will she continue to improve? Is there more I can be doing to help her?
She still loses it over any situation that doesn’t go her way. She looks physically pained when this happens. She has to disappear screaming down the hall. The difference is that it is very short lived and she is able to calm herself without parental intervention. But I was thinking that this was not a real part of her personality. I find it so sad to be a parent who really and truly doesn’t know who her child really is.
I certainly don’t want to misrepresent all the progress we have made. On good days, A is able to use her words more than not. At a play date yesterday she did better than the other child. A was able to express her displeasure while the other child just screamed instead. This made me very proud of her.