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  #1  
April 19th, 2008, 07:25 AM
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Join Date: Feb 2008
Posts: 55
well, we had the follow up appointment with orthoptics and they agreed he still couldn't see, but said there was a slight improvement with following light which has to be good right!
Anyway we have another follow up on 2nd june and he's been put on the waiting list for neurological tests and an mri scan (he's been marked down to be sedated) i am really apprehensive as i don't really understand anything and as they said there is still a chance i could phone them up before the dates come through to tell them they wont be needed and he can see, God, i hope so!
i managed to get hold of a little coloured mirrored disco ball and there seemed to be a reaction so i just thought i'd try with a toy and thought i was getting somewhere only to discover that my rings were reflecting underneath, grr, as soon as i hid my rings there was no interest again. stupid me!
he's certainly progressing in every other way though i have had some real smiles over the last 3 weeks which has been lovely and so special as i've been waiting months (obviously) for them.
got the vista coming again on wednesday which i hope goes well as last time he was far too fussy to get much done, and, as well planned as i am i've gone and got his jabs booked for that monday. oops! if the last lot are anything to go by i could be in trouble as he spent the whole week in tears with a runny tum poor boy!

regarding mri what is hydrocortisone, i noticed in hannybanny's post it was mentioned as something to have on hand after mri, is that something i would need to look into? thanks

hope all of you are doing well
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  #2  
April 21st, 2008, 08:55 AM
fiefer87's Avatar Mega Super Mommy
Join Date: Aug 2007
Location: Near Buffalo, NY
Posts: 4,336
I know its very frustrating, but the good thing is that as small as it may seem, he did make some progress. At this stage, progress seems to come very slowly, but vision develops up until they are 2 years, so there is still a lot of time for things to change.

It is very difficult waiting to get in to see the specialists. The neuro will be very beneficial, especially the mri. I know its very scary knowing they are going to be sedated, but the only way to make sure that there are not brain structure abnormalities that could be affecting his vision or other things is too have the MRI done. And you will want thatinfo ASAP, to rule in or rule out certain diagnoses. Especially, if by some chance there is an abnormality, the earlier you know, the better off you and he will be in the long run. But, of course, knowing this, doesn't make it any less nerve racking, but you get through it and he will come through it like a champ.

In regards to the hydrocortisone, that is a hormonal supplement givin to children who do not make enough of the body's natural stress hormone, cortisol. I mentioned it to hannybunny, because I knew honey was cortisol deficient. It is not something you will need to ask about, as it is very uncommon for babies and kids to be cortisol deficient. The only cases I know of, are connected to the septo-optic dysplasia diagnosis. If you have any other questions, please feel free to ask.
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  #3  
April 21st, 2008, 02:08 PM
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Location: bristol uk
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What are they thinking it could be? What are they looking for on MRI?

Great news about the smiles! Melts your heart doesn't it

How old is he now?
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  #4  
April 22nd, 2008, 05:06 AM
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Join Date: Feb 2008
Posts: 55
oh right thank you, well i don't need to ask for that then...... sorry a bit clueless about it all at the moment.

well, zachariah is about to be 5months come 3rd may. and as far as i'm aware they don't actually know what they are looking for specifically they just know already that his eyes should be functioning normally as he has had the drops and they said everything looks normal and his optic nerves are there etc but i think they are just trying to make sure it is nothing else. it could just be this delayed vision that we have to sit and wait for. i think from all i've read up if it is delayed, the vision starts to come at around 6-9 months and then begins to develop, so the dr says it could still be that but i assume because all the tests involve long waiting lists they've put him on there now so that if/when his sight doesn't start to appear i wouldn't have to wait even longer.
it is very frustrating but like everything else you know it is best for your child in the long run so i just hope they can come up with what the problem is and if they can, how to fix it!

as for his smile yes i love it i have taken so many pictures and sent them off to all the relatives, haven't managed to get a photo though i just filmed it and took a load of stills but it's so nice to see the emotion now as in the beginning i used to say ' he doesn't smile but i know if he could right now, he would be!' if there was even a hint of enjoyment in his face whereas now, there's no question, he'll get away with everything with that smile me thinks, i'll have to control my meltdowns for when he tries to use it to his advantage later on in life heehee!

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  #5  
April 23rd, 2008, 04:57 AM
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babies
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