Hi,
Have changed my name, but have posted here before, and on TTR.
Am having a hard time dealing with things at the moment.
DS2 is developmentally delayed, but that is as far as a diagnosis goes. He has had a whole range of tests, some quite invasive, but all are negative / normal except for a slightly abnormal respiratory chain enzyme result.
All the doctors we have seen, including neurologists, neurophysiologists, community pediatricians, endocrinologists, audiologists, GPs, say that he is a "mystery", "complex", or other words which say to us that they don't know what is actually wrong with him.
He has had a whole range of therapies, and they are helping, but drs are generally negative.
I am very concerned for his future, and the future of the rest of the family, as not knowing exactly what is wrong, nor having a diagnosis, makes it really hard to know where to look in terms of treatments / therapies that may help him.
Is anybody else in this boat?
How do you cope with the constant not knowing, constant negativity, constant "interventions"?
Thx
Here are some suggested organisations that offer expert advice on special needs.
SN children
How do you cope with not knowing eactly what is wrong with your child?
justdontknowanymore · 28/07/2008 14:42
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