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what would you do???

Hi ladies, can I ask a bit of advice, most of you probably know that Isaac was at the hospital the other week and the paediatrician was worried that he was showing signs of muscle weakness, anyway to cut a long story short he tested him for Duchenned muscular dystrophy which thankfully he doesnt have but they do not know what the problem is, he has excessively hypermobile joints and the paed did say that the problems he is experiencing could be down to this, however even taking this into account he should not be struggling in the way he is, he took extra blood to store for the future in case he needs to do genetic and chromosome tests. After the results for MD came back negative, he said he will store the bloods and see Isaac in December, it there is not significant improvement then he will do the genetic and chromosome test and consider doing a muscle biopsy. The thing is, it is driving me mad, it is killing me not to go on google to try and find out what could be wrong (very bad idea I know) but it is all I can think about, I am obsessed with watchin how other peoples toddlers get up off the floor and how they get down, I feel like it is taking over my life, the question is, would you ring the hospital and ask that as they already have the bloods to do the test now or would you wait the six months?

Replies

  • hi Hayley, It is obviously driving you crazy so i would say if they could test now could they go ahead as it is affecting your mental health!! Surely if they can test then it will be present in his blood sample now. It will save you worrying so much about little Issac. six months is a long time to wait, not knowing, i think it would drive anyone crazy.
    Hope it all goes ok. xxx
  • hi hun the delay (not doing tests) is probably to give issac time for it to sort its self out before they launch into potentially painfull tests. i know its awful waiting id be obsessed to!!! i think if its really worrying you then ask for the bloods to be done sooner xxxxxx
  • Oh, yuo must be worn out with all the worry you've had. I'd say they must ahve their reasons for waiting the 6mth but you are entitled to question their judgement, and if you feel you want to ring and ask them why wait, then do. They may be able to give you a good reason why and put your mind at rest somewhat. Try to ring sooner than later and DON'T GOOGLE!!! x
  • I would ask for the bloods to be tested, after all they have already been taken so wont cause Isacc any more pain, but agree with lollyhatch that it would be better to wait 6 months to see if he is ok before putting him through any tests.

    Good luck i cant begin to understand how you feel

    xxDBxx
  • I think I would ask for the bloods to be tested too, that way perhaps it can set your mind at ease. And surely the sooner they can start on a course of treatment if there was anything wrong the better. I hope it sorts it's self and you don't have to worry to much longer. Huge hugs

    xx
  • Hi, thanks for the replies, lolly, I know he is waiting as he wants to see if Isaac improves in the next 6 months, the thing that is doing my head in at the moment is that he has already taken and stored the bloods for the chromosome and genetic tests, obviously if he hadnt then I wouldnt be so bad with it as I wouldnt want Isaac to have another blood test (even though I was more bothered by the first one than he was) I wouldnt ask him to do the muscle biopsy as that sounds pretty horrible but I think for me not knowing is much worse than knowing at the moment, at least if I knew I could begin to deal with whatever it is. I think I might phone my hv tomorrow as it may just be that I have alot on my plate at the moment, Phils scan is due in September but before that he has a visual field test, the results of the test I guess will tell us if it is likely the tumour is pressing on his optical nerve more than it ws 6 months ago, My eldest has just change schools due to problems with the old school although thankfully he is settling really well and loving the new school, Alice is due to start school in September and I have just been to her new parents evening and found out that all her friends from nursery are in the other class so I have had tears from her, I guess it just feels like I have the weight of the world on my shoulders at the moment, I am really tearful and I've had enough, I feel like all I do at the moment is fell like crap and worry.

    Sorry for the long post but I need to let it all out somewhere. :cry:
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