Here are some suggested organisations that offer expert advice on SN.
Argh, do the tests EVER end?(4 Posts)
Sooo, after waiting nearly 5 months since seeing the comm pead, we finally got the letter detailing his recomendations. (apparently his secretary has been changing over to a new system so has been behind writing up his dictations.)
So here we go -
another set of blood tests (cytogenetics) (we've already had 2 of these, plus other bloods too) in the last 8 months alone. Can't even count the amount prior to that.
Another MRI (we've had a few of these already too) Apparently they want to look at one particualr area of her brain.
Another sleep depravation EEG - and waking EEG (we've had 1 sleep, and 2 waking already have mostly been normal)
Another 12 lead ECG - We've already had one, but it wasn't 12 leads i don't think
and a referral to a balance specialist in Cheshire? (that's a new one) But we live in the east midlands - and cheshire is quite a drive!
I know it takes time to get to the bottom of things, and we might never have answers, But god i feel awful inflicting all this on DD I feel like hospitals are second homes to us right now, and seem to spend more time driving too and from local hospitals than doing anything else with our lives! Some part of me is screaming i just don't care whats wrong any more stop with the tests and let her be a normal little girl for a bit, but i know we need a diagnosis to hopefully stop the fitting & everything else.
She's so blooming brave, even the nurses in hospital go out of their way to buy her presents and sweets, because she really does set an example. Some days i feel like i just can't put the game face on and be as brave and as wonderful about all of this as she can.
Just wish i could make it all go away for her.... sorry emotional outbust over.
DS2 is 3 and his most recent tests were MRI at 12 months and genetics bloods at about 15 months. He'd been poked and prodded since birth. We chose to give up testing because we weren't getting anywhere but I appreciate this is different for you. My friend's ds has similar issues to mine and they are still testing him, he is nearly 6.
Can you write to each tester and ask them to explain exactly what they are looking for so you can make an informed decision yourself about whether it is necessary?
Unfortunately testing is done in order with the cheapest test first. If that doesn't help then they get the next test up in expense etc etc. In the NHS you are usually not allowed the more expensive test/ medicine/ doctor until you've gone through the cheap ones to no avail.
Neuroimaging is a very new and exact method of identifying that some areas of the brain are not reacting as it should to various type of stimuli. And for each sya MRI scan they will be focusing specifically at one area of the brain. It is all about observing neurons and measuring blood flow in various part of the brain. This is still on the cutting edge of research sometimes and you may be part of pushing the boundaries of understanding a bit further.
It has been easier for researchers to carry out research with fully developed adults, and developing adolescents but more difficult with children, and especially you developing children who have not developed their abilities to respond to the same stimuli.
you might like to have a look at one of my new research paper collections Brain Development and Maturation and may be more specifically Normal Development of Brain Circuits
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