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I am hoping that there are other people here who have children with 22q11.2 Deletion Syndrome. I'd like top hear from you have experience with cognitive regression, which is caused by 22q11.2 Deletion Syndrome. At what age does this set in and are there any possibilities for delay? Any comments are welcome!


Hello eddie, 

The most important fact about 22q11.2 Deletion Syndrome is that it does not always manifest with all the possible symptoms. Sometimes it’s manifested through more or less visible physical condition (related to heart or gastro-intestinal, to name just the two) and only sometimes it does have major effects on child’s cognitive development.

This means that there is always some degree of developmental delay – the child starts to speak later than average, but, as long as you are constantly keeping track of the child’s development , chances are far better that the problem will be addressed in time, before there is any permanent cognitive delay. So, there is no specific age to monitor, instead, little milestones are far more important.