I write this message with a heavy heart, as my wife and I are beyond our wits end. The subject says it all, my autistic 6 year old son will not swallow anything, including his own saliva.
How did it start? Well, my child had a fantastic appetite. A couple of months ago, he went to school, gobbled down his porridge & toast as usual, then we got a phone call from the school at lunchtime to pick him up. He was highly distressed, complained of something in his mouth, and was raking at his tongue to get something out. We can only assume he choked on something, was maybe tricked by a pupil to eat something horrid, or some other incident that has triggered this. We never did get an answer from our son or the school as to what exactly happened. He was probably at lunch or in the playground, as he usually has support teachers with him. Over the course of a week, he rejected all solid food, then after 7 days and 2 doctor visits later, he rejected most fluids for 2 days straight, including his own saliva. At this point, we took action and took him to A&E
We had him admitted to hospital to get a battery of tests, and everything came up clear. You name it, he has had it - endoscopy, ultrasound, blood tests, x-rays, specialists/dieticians/pediatrics have all been putting their heads together and came up with nothing. All have agreed that his swallowing mechanism works and that this is psychological.
After being put on a drip, and then a nasal gastric tube for a week, he was released from hospital to see if his mental state would improve at home. It did, and he has been drinking milk shakes and yoghurt drinks with a dietician keeping an eye on his nutrition levels. This was a few weeks ago. We used a distraction technique where I engaged him with his Star Wars game, and he must have been so engrossed that he actually forgot about the swallowing.
He still hasn't had solid food in 2 months. The hospital were originally thinking of surgery to install a PEG so that he can be fed through the stomach wall with a little portable feeder, but they have said autistic children do not react well to them, and given how many times he pulled at the NG tube, they think the operation would be a waste of time.
Yesterday, the original anxiety and symptoms from before his first hospital visit returned. Utter refusal to swallow anything, but the poor boy is desperately trying to get it down. He sometimes holds liquid in his mouth for 10 minutes before giving up and spitting it out.
Here are the symptoms: High levels of anxiety about swallowing liquids or solids. He spits out his own saliva, and will wake in the night to do this as well. Only my wife is allowed near him mostly. He will attempt milk shakes, yoghurt drinks, diluting juice, even fresh juice which he doesn't actually like.
On the autism: My 6 year old son has delayed speech, a security issue with new faces, one-to-one support at school. He can communicate but, when phonating, misses out consonants frequently. Socially, he wants to join in and is normally very, very cheeky and smiley. He doesn't always understand how to join in group activities and prefers to watch before deciding if he will in fact partake. We understood him perfectly well in terms of his needs before this incident. Speaking of which, there was no incident like this before, and he has no history of a sensory overload that has caused anything like this before.
His behaviour of late has been full of tantrums, meltdowns, tears and fear. We have been given strategies such as the no pressure approach, i.e; "no fuss, leave food around, have meals together and leave the option for him to partake". Distraction has been tried, which worked originally, where he'd play a game on his playstation and yoghurt drinks left on the table would start to go down the hatch...eventually. We tried the disciplined approach, which was to help him reduce habitual spitting when the swallowing of the drinks was working. This involved taking a drink from him if he spat anything out, and denying him another one for 30 minutes. And 30 minutes to a little boy only on liquid is a long time. Again, this did seem to be working, but as I was the enforcer, he came up with a new strategy. "Daddy, I don't like you, go away please". This meant if Daddy wasn't in the room, he could start spitting. So now, I'm the bad guy, and he actually starts to get upset if I speak to him. So the child dietician's strategy has completely blown up in my face.
Has anyone come across this before? We have tried ice lollies / ice cream, and a hundred other things that would seemingly solve the problem...but he does not trust the idea. As I said, he spits his saliva out. The autonomy of his swallowing does work, and I have watched it happen both during the day and while he sleeps.
We live in the Highlands, and I have friends who are doctors, one of which has autistic children himself. Nobody seems to understand the problem or how to address it. All I can find in terms of similar issues are children who will only swallow certain things, but what do we parents do when NOTHING will go down. He doesn't want to lick anything, that just isn't working. The reason I re-iterate this is because that seems to be the most common advice after everything I explain to everyone.
Please...help..we are about to go back to hospital for the second time after 36 hours of no fluid in him. I can't bear the thought of him getting another NG tube because there is still no diagnosis and still no solution.
