At least I hope this is the middle. Otherwise...
I normally like to wait until we’re out the other side of a hard place before I write about it. But this hard place has been going on for a while and every time I think we’re close to the end it turns out to be just another bend in the road. And if I wait till the end I might never write again.
I wrote a while ago on FB & IG about William being unwell due to a vitamin deficiency, at the time I genuinely believed that this was the cause of his nausea and intermittent vomiting. I also genuinely hoped that, as his body was absorbing the B12 from the supplements he was taking, he would gradually start to improve and return to his old self.
As months rolled by and his condition seemed to worsen we went back to the doctor, searching for another cause. After further testing (showing nothing) and an intense period of illness, culminating in blood-stained vomit, we asked for an endoscopy to be performed. The doctor agreed but needed to refer us to a paediatrician because William is still a child. The paediatrician was great. Astounded by his diet, and perplexed by his excellent blood work, but otherwise very helpful. She ordered a few more tests but said if they came back normal then she would refer William for an endoscopy.
Great, thinks I. Now we’ll finally get to the bottom of this thing and we’ll be able to get him well again. The tests were normal, the endoscopy scheduled, the results of which were reflux. An incompetent sphincter. A relief on the side of it not being fatal and no other nasties present. But extreme frustration on the side of treatment. Diet. And. Exercise. Right?! That’s super easy with a kid who hates most foods and most forms of physical activity.
He was already on the best medication to reduce the symptoms of reflux. So no magical pill was forthcoming. And now we’re just trying to get through the days, attempting to get him to school but mostly failing. Trying to improve his diet and exercise but mostly failing. Trying to be calm and rational as my life is constantly interrupted but often failing. Trying not to catastrophise a future where he lives out his days with a debilitating chronic illness on top of all his other barriers to living an independent and fulfilling life. Definitely failing.
So if you have a child like mine - ASD, SPD, ARFID/SED, & GERD/GORD. And the reflux is not responding to treatment, I’m open to hearing any words of wisdom or encouragement or even just solidarity.
#sendhelp #ARFID #GERD #GORD #teenswithchronicillness #willthiseverend