Thursday, June 19, 2008

Phew time to breath again...

Pics and Los to share in the next post, warning very long blah blah blah post, so if you want a coffee id get it first lol

Well for the past few months weve been very busy, doing there whole Drs thing to try and discover what is wrong with our little man, its been tests tests and more tests, without positive or reassuring results.

Weve been given the run around by several Drs, and now 10 weeks later are no closer to an answer than before, which really sucks.

First we went to see the Paedatrician after many months of me telling the Drs its not right my son cant talk, they all told me hed get better, how old is he theyd say, almost three my reply, ah hes fine no probs many children dont talk til they are three or older, or my favourite his brother talks for him ?? what the Jacks got less idea what he wants then us are they for real??
So we get to the Paedarician, after weeks of fighting with their secretary about needing to see someone ASAP we finally get an appointment with the Paedatrician, who sends us for numerous tests, bloods, urine, etc, and tells me to go for this EEG scan, (brain scan) just to cross it off his list. A couple of days go by and i finally book him in for EEG scan only to have to wait for two weeks to get it done. Scan completed we fast forward to next day at Gps surgery where Heidi is getting her shots, Gp tells me all bloods have come back fine, not sure what to do now, youll have to wait to see Pasedatrician again. That night we are eating dinner and get a phone call from the Paedatricians office, we need you to bring blake in tomorrow, to start treatment, ive been discussing the results with the head of Neurology (wait hold up the head of neurology, WTF??) and weve decided that Blake needs to start treatment for this rare type of Epilepsy (Landau Kleffner Syndrome) that is making his Brain fit, he will need to be hospitalized for at least three days, well see how he goes.. see you Friday morning at 6 (huh?? all still very overwhelmed i got off the phone and tried to explain to Paul)

So for the next eleven hours i researched the internet for answers to the mystery illness that was apparently the cause for my sons problem, the first few minutes were mind numbing, im not sure but when you are affected greatly by something your body just goes into shock, i couldnt fathom what i was reading , my son, our little boy is never going to talk, he will eventually loose all understanding of our language, these children are affected for the rest of their lives although in most cases the Epileptic seizures cease at about 15, and the scariest part, there have only been about 250 reported cases since 1957 when it was discovered, how are you going to fix him when you dont know how??

So we get to the hospital and the Drs really has no answers other than well see how this goes, WTF?? Head is spinning, see how what goes??
so we go through the traumatic experience of getting the IV line in which was a mission that involved 7 people, just to hold him down and one to put it in, he starts treatment and we stay at the hospital for the weekend, none knows anything and people are asking me what is wrong with him?? what you people are the Drs here not me, finally comes Monday and we see another Paedatrician, who it the head of Paedatrics, here on the Gold Coast, im thinking great finally somebody who will give me some answers.

Hi Dr just wondering if youve got any other information on this Landau Kleffner Syndrome?? hoping you could help me understand what is happening??
Dr replys in very polite voice, um im not really sure ma'am for all we know (flicks through files) Blake could have Blake Corliss syndrome, my heart just sank to the floor , what?? arent you going to help him, oh yes ma'am well do all we can for him, just the reaction differs from patient to patient and so we just have to treat it as it comes.

FAST FORWARD a few weeks and we get to see the Head of Paediatric Neurology at Brissy hes a lovely Dr who seems very keen to understand this syndrome and has been on several telephone conferences with Drs in Seattle and somewhere in Norway where they seem to be taking kids for USA and Europe to they have conflicting reports and feel blake should go for more tests including and MRI to assess if it is LKS or some other type of problem, (which they havent specified, but ive read the symptoms of this syndrome can also be caused by a brain tumor or lesions on the brain
Yesterday we have been for the test MRI Scan and also on Monday we went for a repeat EEG scan to see if medication is having any affect, hopefully we will have some answers by next week although we dont see the Neurologist again until the 7th

so there has been my last few months, weeks, in a whirlwind of caious and confussion, and we are still no closer to an answer than before, still in limbo waiting for the next lot of tresults to come in and tell us an new story, hopefully this ones better thats all i can pray for right now is a better ending for our little man, no matter how many times you think it cant get any worse it just dose and seems to come and knock you flat on your arse again... im sick of that feeling, flat on my arse, not way out..


til next time with the LOs and opics to share