C
Chele
Member
Hi there, Just been told today, that after months of worrying that my son has a very rare disease (HNPP) causing paralysis, going deaf and possible blindness - that it is indeed Conversion Disorder and there is actually nothing wrong with him at all!
In a bad place here, as only just come to terms with all the hoopla that came with having a teenager in a wheelchair and physios and Occ therapists all over the place, to being discharged from all that and passed over to a counsellor for him to deal with his "issues"!
He is 14 years years old and a lovely lad, but having problems over the years with asthma and eczema, developed social phobia (school phobia) Mostly being told to pull himself together and get a backbone!
He started with foot drop in March this year, which (after some trips which caused broken arms) progressed to right side paralysis, total body numbness and strange tingling sensations. Had all the EMG/muscle tests. The peripheral nerve test showed that the foot drop was real enough, but all other tests inconclusive. It all came and went a few times. Talk of sending him to a special school. By September, it had all gone away apart from some right leg muscle pain and some funny feelings in his hands. After being told a a joint meeting that it was probably physcosomatic in origin, all the help we were being given disappeared and we are left with 1 counselling session a month and a diagnosis of CD.
not sure where to go from here. Those symtoms were so real! Expect them to keep coming back and worry in case something medically is being missed, but also told that if I insist on seeking a medical explanation I could be causing him further damage. I dont want to cause my kid any problems of course, but so difficult to accept that there is nothing wrong with him!
Sorry for the long rant - need to vent! Any ideas anyone?
In a bad place here, as only just come to terms with all the hoopla that came with having a teenager in a wheelchair and physios and Occ therapists all over the place, to being discharged from all that and passed over to a counsellor for him to deal with his "issues"!
He is 14 years years old and a lovely lad, but having problems over the years with asthma and eczema, developed social phobia (school phobia) Mostly being told to pull himself together and get a backbone!
He started with foot drop in March this year, which (after some trips which caused broken arms) progressed to right side paralysis, total body numbness and strange tingling sensations. Had all the EMG/muscle tests. The peripheral nerve test showed that the foot drop was real enough, but all other tests inconclusive. It all came and went a few times. Talk of sending him to a special school. By September, it had all gone away apart from some right leg muscle pain and some funny feelings in his hands. After being told a a joint meeting that it was probably physcosomatic in origin, all the help we were being given disappeared and we are left with 1 counselling session a month and a diagnosis of CD.
not sure where to go from here. Those symtoms were so real! Expect them to keep coming back and worry in case something medically is being missed, but also told that if I insist on seeking a medical explanation I could be causing him further damage. I dont want to cause my kid any problems of course, but so difficult to accept that there is nothing wrong with him!
Sorry for the long rant - need to vent! Any ideas anyone?
Never heard of that til now. So sorry about your son having to go through that. Doctors are so ignorant at times.