How do you cope with not knowing eactly what is wrong with your child?

[justdontknowanymore]

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

Well, if you ever want to meet up sometime, and have a coffee, let me know!

hi sorry you going through this ! we are in a simlar boat to you dd as ggd, hyptonia, seizures ofsorts , moverment disorders and no dx we been told her brains still growing so may not now till after this time shes hasda mir, eegs bloods tests most clear or inconclusive i hate no not knowing what is up with dd 14m i think if we new we maybe cope better

What is GDD?

Thank you FioFio. Would this be similar to 'global learning difficulties'?
DD has that and I have never fully understood what it entailed as it seems so ambiguous.

not sure but i think its the same but for an older child, i may be wrong some one will come along and tell you