Thursday, October 30, 2008

Once Again..

I find myself being stuck on the "well, Salamander's [xyz] symptoms are just not severe enough to warrant [investigation ABC]'" merry-go round.


I can't tell you how many times I've heard this line before.
And in an exactly equal amount of times, after finally finding a person with the required letters behind his/her name who WAS willing to conduct the necessary investigations, stuff was found. Stuff that would then provide another piece of the puzzle of Salamander. Stuff that would then trigger additional interventions that would have a profound impact on Salamander's health and daily functioning.

I am trying to get a local, big name hospital, to schedule a sleep study for Salamander (his pedi agreed and wrote the referral to said big name hospital). Today I was informed that my request needs additional medical review to determine if such a study is warranted.


Salamander has been extremely tired (falling asleep in class, falling asleep on the bus, little to no energy). He is rigid as a board while he's asleep (his muscles do not relax). He has a history of sleep apnea as a little guy (TG that all went away after a complete dietary overhaul). He has a neurodevelopmental delay diagnosis and he is entering puberty (and he wouldn't be the first child with ASD to develop 'something seizure disorder related' in puberty). He has continued bed wetting issues. He has a history of severe night terrors. He has mitochondrial dysfunction and a history of "mystery" metabolic crashes. When I wake him up at night to go use the bathroom, he has no idea where he is, what he is doing, and where he's going (he's literally 'on a different planet').

Granted, there could be many, many underlying causes for all of the above. So let's start working down the list and cross off as we go, OK??

Look at this blib from said big name hospital's sleep clinic website:
"The Pediatric Sleep Disorders Program deals with all aspects of sleep medicine, including sleep apnea and nocturnal gastro-esophageal reflux and bruxism, difficulties in initiating and maintaining sleep and circadian rhythm dysfunction. As a neurology-based sleep disorders unit, there is a particular emphasis on the neurologic aspects of sleep disorders in both children and adults, with special emphasis on narcolepsy, idiopathic central nervous system hypersomnia, periodic limb movements of sleep, restless legs syndrome, sleepwalking, confusional arousals, sleep terrors, REM sleep behavior disorder and all sleep-related epilepsies. "

Ya'd think Salamander has enough going on to fit within this description somehow????

I am tired. I am tired of being told that my child is 'not severe enough.' So that makes what he's going through OK? I am NOT a neurotic over anxious mommy looking for attention, I am not looking for conducting unnecessary medical diagnostics on my child, I am not looking for more 'issues' to add to our already lengthy list of 'issues'. I do NOT make 'stinks over non-issues'.

I have identified a problem and I want for my child to get the necessary medical attention to investigate this problem further. But apparently that's too much to ask, as my child 'is not severe enough.'

[no, I am NOT giving up on this. I have never given up on anything related to Salamander. I will give them a few days to conduct their additional medical review, and then the real 'fun' will begin]


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