Confused

[George]

Hi, I don?t know what to do ? my four and a half year old son diagnosed ASD in May has recently had another appointment come through to see the Paediatric doctor (his old one has since left) I rang to ask what the appointment was concerning, thinking it would just be a follow up, his new paed phoned me to say he had been looking through his notes and was concerned to find a reference made, by his old paed to the fact that he had �prominent calf muscles� and he wanted to do an enzyme test on him for muscular dystrophy ? he said �I?m afraid its not a very nice condition�

 

I said that he did have defined calf muscles but then anyone would who spent the amount of time he did cycling with his legs would - he also walks quite a lot on tiptoes,? he is an extremely tall and thin but very strong little boy who shows no sign of having any problem getting up off the floor or with his mobility in general. It?s taken me four days to get really down about it ? and angry, I just feel it was grossly irresponsible for him to drop that in a phone conversation when everyone is in such a venerable condition. Instead of looking at his file thinking - what can we do to help him develop and make sense of the world - he picked out �prominent calf muscles� then proceeded to scare the living C**p out of me. At the time of his assessment the OT report was not completed because Jamie went into meltdown at the fact she was 3/4 hour late then proceeded to sit on his play mat, even when she was told that this was a major faux pas she would not move ? anyway the upshot was she didn?t complete it and has not contacted again, the whole thing has left me so frustrated, do I get the test done even though I know that he is OK but then there is always a little voice in the back of your mind and its pushing me into a downward spiral. I just don?t know what to do.

 

Sorry to go on I?ve been obsessing over this for days and I?m driving everyone mad with it (Last night I couldn?t get to sleep - I was having conversations with the paed in my head getting more and more wound up over it)

Just had to get it out ? thanks for listening.

 

George.

[elainem]

I think your instincts are right and that there is nothing wrong BUT from the way you have written your post, you are probably like me and will always have a niggle unless you do the test.

 

I agree with your comments about the Paediatrician , sounds like an idiot.

 

I would say if your son can cope with the test it will put paid to any doubt you might have.

 

Elaine

[bid]

I think professionals often make 'throw away comments' that they don't realise have a huge impact on parents.

 

When Auriel was first assessed by the school doctor at 5 he was found to have hypertonic responses in his legs (I think that's the right terminology) which I was told was indicative of cerebral palsy.

 

Of course I panicked...but he doesn't have CP at all, it was just a 'thought' of the doctors...they forget that we're not medical professionals and sometimes I think they 'think out loud' without taking into consideration the worry they cause.

 

Bid

[caroles]

Maybe that paedatrician is newly qualified,really nasty doctor thought.

Would be a good idea to have the test ,if only for taking away youur worries.

IF IS CREATINE KINASE test is just a blood test.,they would not do another test unless the creatine kinase is high or very high.

Has your child always tip toes? many autistic kids tip-toes ,but with muscular dystrophy ,they start later .

[CarerQuie]

I would have thought that Creatinine Kinase would have been done as part of the routine blood tests.They might well test for fragile X,too,since it seems to be the vogue to test all ASD children for this.xx

[George]

yes Jamies has always walked on tiptoes - Thanks everyone, Think i'm going to give the doc a call tomorrow to get the whole thing over and done with then I can stop worrying.

George XXX