I'm sorry it might be my Englishness... I've had a few people ask me...A "Tumble-Turn", is when you get to the end of your swimming length and you do a summersault underwater and turn at hte same time and carry on swimming like the "real swimmers" do. One of my Canadian friends called it a flip turn.
Well last night we got our follow up call from the neuro clinic, they actually are very nice don't get me wrong, I just feel that the "structure that they have is flawed".
They are nice, for the following, they are happy to keep the "door open" for Oatie, we've never been to the neuro clinic for the following reasons.... They want to poke and prod Oatie, and weigh him for the millionth time and OK I can hear you shout "What's wrong with that...!", well nothing in principle if it's for a valid reason. Like when he got diagnosed,.... that was fine.
Well that's not why we haven't been. They want to give him a general anaesthetic to scan his brain to see what's damaged. So for me, I'm like WHAT'S THE POINT! Why do we need a photo to see the damage, what is that going to do? Do they have superhuman powers to correct this or is it just to tick a box? How will this improve Oatie's treatment or his quality of life? Why should he have to have a general anesthetic at the age of 3 (he was 2 when diagnosed) for no VALID reason in my eyes. I have nothing against anaesthesia at all, but there is a place... for operations, life and death etc... not just to tick a box which doesn't improve or alter the outcome.
If at some stage of his life Oatie needs an GA (general anaesthetic) the I might ask them if they want to scan it then then do. The reason for the GA is at this age he can't lie still enough, so again if he is able to lie still when he's older, I don't mind that either.
Spending time going for that procedure, which to me is "looking back" not looking forward is a waste of time. When we first found out his diagnosis, I remember scouring hte internet,and came across this book title, no laughing I'm still on the waitlist from the library... the title is something like...."So my child has brain damage, so now what?", I like the idea of it, looking forward and making a change with what you can change... not sitting in a heap crying over what you can't. It was that book that mentioned ABR, I caught an extract on the net and it just said ABR, it took me 2 hours on google to decipher what ABR was. As soon as I saw it, it made so much sense to me ....the next day we were booked in for our induction. with tickets bought!
Anyway, this lady phone my darling husband... and obviously they've never met, (so to be fair, they don't know how severe he is in their defence) him and asked how his walker was and what aids and then my husband mentioned ABR and he doesn't have a walker or mobility aids except his pushchair/stroller. My husband mentioned the benefit of ABR,... and how he's improved... Then she was saying how he will make "natural progress", Yes I agree that he might do that, and as he gets older he'll mature like my other two. However, this time last year, he couldn't sit without his hands supporting him. Oatie was so unstable physically, I couldn't even get him to weight-bear for more than 2 seconds, If it wasn't for the off duty, Canadian soldier who helped us off the plane and to our cab and gave me his barracks number if we needed help (he joked he'd send a tank...) I don't know how I would have done it (my heart's a softie, but I'm not). To then have Oatie holding not even all my fingers yesterday (they usually feel like they are being pulled out), that isn't natural progression, it just isn't. I feel like contacting our paediatrician just to let him see Oatie and let Oatie walk in, and have a camera handy to capture his expression and send that to the sceptical neuro clinic... So the door is still open... The other flaw is now recently they are now x-raying the hips... as for YEARS they have seen that problems with the hips now results in bigger problems later. So yes, that sounds like a good idea and you don't need a GA, why did it take YEARS for them to work that out, or change the procedure?
Today he did some messy art, something he doesn't like to do, so I'll post a photo in a a while, it's a St Patrick's day Craft.
Well last night we got our follow up call from the neuro clinic, they actually are very nice don't get me wrong, I just feel that the "structure that they have is flawed".
They are nice, for the following, they are happy to keep the "door open" for Oatie, we've never been to the neuro clinic for the following reasons.... They want to poke and prod Oatie, and weigh him for the millionth time and OK I can hear you shout "What's wrong with that...!", well nothing in principle if it's for a valid reason. Like when he got diagnosed,.... that was fine.
Well that's not why we haven't been. They want to give him a general anaesthetic to scan his brain to see what's damaged. So for me, I'm like WHAT'S THE POINT! Why do we need a photo to see the damage, what is that going to do? Do they have superhuman powers to correct this or is it just to tick a box? How will this improve Oatie's treatment or his quality of life? Why should he have to have a general anesthetic at the age of 3 (he was 2 when diagnosed) for no VALID reason in my eyes. I have nothing against anaesthesia at all, but there is a place... for operations, life and death etc... not just to tick a box which doesn't improve or alter the outcome.
If at some stage of his life Oatie needs an GA (general anaesthetic) the I might ask them if they want to scan it then then do. The reason for the GA is at this age he can't lie still enough, so again if he is able to lie still when he's older, I don't mind that either.
Spending time going for that procedure, which to me is "looking back" not looking forward is a waste of time. When we first found out his diagnosis, I remember scouring hte internet,and came across this book title, no laughing I'm still on the waitlist from the library... the title is something like...."So my child has brain damage, so now what?", I like the idea of it, looking forward and making a change with what you can change... not sitting in a heap crying over what you can't. It was that book that mentioned ABR, I caught an extract on the net and it just said ABR, it took me 2 hours on google to decipher what ABR was. As soon as I saw it, it made so much sense to me ....the next day we were booked in for our induction. with tickets bought!
Anyway, this lady phone my darling husband... and obviously they've never met, (so to be fair, they don't know how severe he is in their defence) him and asked how his walker was and what aids and then my husband mentioned ABR and he doesn't have a walker or mobility aids except his pushchair/stroller. My husband mentioned the benefit of ABR,... and how he's improved... Then she was saying how he will make "natural progress", Yes I agree that he might do that, and as he gets older he'll mature like my other two. However, this time last year, he couldn't sit without his hands supporting him. Oatie was so unstable physically, I couldn't even get him to weight-bear for more than 2 seconds, If it wasn't for the off duty, Canadian soldier who helped us off the plane and to our cab and gave me his barracks number if we needed help (he joked he'd send a tank...) I don't know how I would have done it (my heart's a softie, but I'm not). To then have Oatie holding not even all my fingers yesterday (they usually feel like they are being pulled out), that isn't natural progression, it just isn't. I feel like contacting our paediatrician just to let him see Oatie and let Oatie walk in, and have a camera handy to capture his expression and send that to the sceptical neuro clinic... So the door is still open... The other flaw is now recently they are now x-raying the hips... as for YEARS they have seen that problems with the hips now results in bigger problems later. So yes, that sounds like a good idea and you don't need a GA, why did it take YEARS for them to work that out, or change the procedure?Today he did some messy art, something he doesn't like to do, so I'll post a photo in a a while, it's a St Patrick's day Craft.
I agree with you that the general anaesthesia is tricky. The point of doing a brain scan (PET, MRI, CT?) though is primarily to have a reference point to see changes in the future, especially if there is contrast agent used. Certain brain anomalies develop over time and could be dangerous. Then there is simply the added information that allows us to learn more about how the body works. But as I said the GA is tricky and if there does not appear to be any urgency so then you should go with your feeling.
ReplyDeleteI totally agree with your feelings about GA and all these types of scans. After Adam's accident when he lived in Intensive Care, one M.D. finally said why put him through all these MRI's, PET scans, etc. They will show a brain injury which we know exists already. I always think that a mom's intuition is the best guide and the M.D.'s know little about the brain anyway. I once posted about a boy without a cerebellum and pons who walks, says words, grasps....the M.D.'s can't explain it. The scans showed he should not be able to function but, gee, he is functioning. Stay with mom's intuition...
ReplyDeleteDear Phil and Eric,
ReplyDeleteThanks guys for your support. There is a saying in England "if it ain't broke, don't fix it!" and yes you could say his brain damage is "broken" but he Oatie, is a really lucky guy, no seizures, no twisted limbs, he's improving with the ABR we do with him almost everyday, his ABR machine he has everday, his speech is improving and his mobility, he feeds himself. Because of what anaesthesia is/does, I wonder or my hugest concern is, if the anaesthetic would "change" his condition and then make it permanently worse, like you rightly pointed out, for Oatie because he is stable and improving for me there isn't any urgency. As he isn't shaky either, I would like to think in a few years time, he could lie still on his own accord no anaesthetic to have the scan.
Love Mel
xxx