Hi there guys, just wanted to chat really to anyone similar. i had my baby Paul in november and he's got some muscle problems which haven't been diagnosed yet. he's due to have a muscle biopsy and some nerve testing but i'm so torn as i know he'll be in pain and be left with a scar etc. anyone else's baby had similar procedures? my husbad doesn't want it done but i think we really need to know what the underlying cause of his floppyness is. the doctors think it might be quite rare.

hello, my lo doesn't have the same problem but i thought i would reply anyway. He is also sort of un-diagnosed at the moment. We think he has dvm so his eyes don't work properly at the moment (doesn't see anything but we think he responds occasionally to light). it's meant to fix itself by 6 months and if not then he will need to be getting tests done himself. i'm not sure how the tests will be but i know being sedated for an mri scan is one of them. Obviously i am praying that it wont come to that and he will be able to see by then but, if not, as horrible as the thought of your little baby going through any sort of scary treatment is you just have to remind yourself that in the end it will be to help them get the best help. you could always ask if there were different routes you could go down before this one if it's really worrying you, but i'd imagine they know what they are doing.
Good luck i hope it all goes well for you and that you get some sort of useful information from somebody. i actually go to another website which i've found useful, i don't know if you would find something relevant to you but it may be worth a try. www.justmommies.com the problem with rare conditions i've found is it's so difficult to find others in the same boat. thinking of you, take care

Hiya,
sorry i dont have any experience of anything like your babys problems. ben is autistic but before he was diagnosed he had an mri scan and blood tests but they did these under sedation. i just wanted to add that it was horrible seeing them have to do that to my son but much better than i imagined and done so quickly. i could stay with ben throughout the entire procedure etc so just wanted to reasure you that its not always as bad as it sounds when they say these things and ours were all done in one day on the childrens ward at the hospital
jenny

thanks for your replies we've been in Alder Hey for the last couple of days and it actually wasn't that bad at all. paul hardly complained, only before his biopsy because he had to fast so he was hungry. all the other tests he was smiling and laughing he surprised us all.

we actually had 2 MRI scans when he was a few days old, the first was was horrible because i hadn't been able to feed him so he screamed his head off but the second one the following day was more organised and i stuffed him so full he slept the whole way through. they never even mentioned sedation, but if your little ones are a bit older this will be a good idea as the mri scanner maked very loud noises. you are able to sit there though and you can ask them to stop at any time if you feel that your baby is becoming too distressed.

we've still got to have some more things done but these are more to do with speach and language and eeding so shouldn't be too horrible.

thanks for the support

Hi Chriss, how have you been hun? I changed my user name from Gazno. Do you remember me? How is your little boy? ive missed seeing you on here, how have you been? Please pop over to the November forum, all the user names have changed but if you ask they are all the same crowd as before and im sure they would like to know how your going.
What is your LOs name? How old is he now? xxx

I'm glad to hear everything has been going well and i hope you get some good results from it all. How wonderful that he was smiling and giggling through most of it, must have made it so much easier for everyone.
my lo is 3 months + at the moment, being seen again at 5mths and so i'd imagine he'd be around 6 months before they do scans (if still needed, which at the moment i have to say looks likely) it's nice to know i can sit there with him though.
Hope the next stage is a breeze for you and paul, it will be good to see that you're moving forward if nothing else. good luck thinking of you all