Dysphagia as I learned yesterday is the official name for when a person has trouble chewing, swallowing and eating in general. I have to be honest and say that even though Greg’s has had problems chewing and swallowing all of his life, it never occurred to us that it was a recognised condition that can be treated with therapy.
Last week at one of our counseling sessions for Greg’s, I mentioned to the Doctor that we had recently had a scare, when Greg’s choked badly on a piece of potato. Greg’s battling to swallow is not something that we are entirely unfamiliar with as he has always had ‘moments’, but luckily as he has got older he has got better at chewing and with regular reminders to cut his food up into small pieces, especially meat, the choking incidents have become notably fewer.
I was surprised when the Doctor was straight on the phone to the speech therapist at the center and we had an appointment for yesterday. Apparently speech therapists are trained in all sorts of areas and dysphagia is one of them.
When we arrived for our appointment I could hear a loud lady in the office and my heart sank, I dread dealing with ‘loud’ people especially when it’s important, but I was pleasantly surprised, the speech therapist turned out to be a really lovely woman, who put Greg’s at ease right away.
We had to take a variety of foods for Greg’s to eat in front of the therapist, so that she could assess him, so we had taken a sandwich, dried bread snacks and some fruit. She let him choose what he wanted to eat and watched him as he ate.
I couldn’t help but feel sorry for him, as being watched while he ate must have made him feel squirmy, I know it would have if it were me. She stopped him every now and again to see where the food was in his mouth, which again couldn’t have been very pleasant for him, but he took it all in his stride.
She asked him questions too, like what food he likes, if he likes chewing gum and whether he prefers to drink cold water or water at room temperature.
What She Told Us…
She told us that he has dysphagia, which as I mentioned earlier in the post is the proper word for having trouble chewing or swallowing or both. As this information was not new to me after seventeen years of watching Greg’s eat this news did not come as a surprise.
She also told us that Greg’s does not use his back teeth for chewing at all and as his tongue is weak the food sits in the roof of his mouth until it softens enough for him to swallow, which is why he chokes easily. The roof of his mouth is exceptionally high too, which makes it even harder for him to move the food around his mouth.
The Good News…
Is that there is help for people with dysphagia. Speech therapists are trained to know how to strengthen muscles in the mouth to make eating easier. Just knowing that things can be done to help Greg’s to learn to eat more safely is a big relief.
The Not So Good News Is…
That the medical center is very busy and has a waiting list. The therapist will talk with the other therapists dealing with Greg’s to see what can be done for him.
We have already been fast tracked for the help we are getting now, not because Greg’s is more important than the other children, all our children are important, but because his conditions have been over looked for so long. We also feel that the medical center realize that they had some doing in that and are bending over backwards to help us now, which is appreciated.
Even though Greg’s does have speech therapy out of the center, back in February we also put him on the waiting list there too, as a precaution just in case we battled to find a speech therapist elsewhere on the island. Which also works in his favour.
The therapist said that at worst she hopes to be able to fit him in once every couple of weeks to work with him and t0 show me how to help him too.
More Diagnostic Tests For The Future…
Apparently dysphagia can be caused by a number of conditions and syndromes.
Whilst Greg’s was in hospital going through the tests that diagnosed his myopathy a few years back, the Doctors did say then that his difficulty chewing and swallowing was caused by his myopathy, which made sense and still does. But the therapist yesterday advised us to get more tests done to find out for sure if that is the cause.
She wants us to rule out any underlying condition other than his myopathy that may be causing it, although she thinks it is probably his myopathy too.
We have been advised to see the neurologist on the island to see if he thinks it’s worth referring Greg’s for more tests in Athens, but as there is no immediate rush we will look more into it after the summer is over and when we have a little more money. The therapies he will receive will still remain the same, so there is no rush.
Greg’s Must Realise That He Must Step Up…
As Greg’s has got older we have told him that he has to want to help himself. He can have all the help in the world, but it is pointless if he doesn’t step up and want to put the work in.
The psychiatrist has told him that, as did the speech lady yesterday. It may seem a little harsh, but he is no longer a little boy that can be cajoled into doing the things anymore, he has to want to make changes – although I do find that cajoling still works to a degree!
My worry is that he does not see the importance of the things that he needs help with, as his brain is wired different, but he is not daft, so fingers crossed, although he still has the attitude of a teenager which of course does not help.
How All Of This Has Left Me Feeling…
How I felt yesterday was exhausted, sort of happy for the help, a little sad as I swear I saw a tear in the corner of Greg’s eye, although he denied it and said he was fine – maybe it was just hay fever, but I’m not so sure.
It’s over a half an hour drive to the medical center, so it gives us a chance to chat without distractions. I want to know how all of this is making him feel and it gives him and me the ideal opportunity to share things, trivial and not so trivial.
I also let him know that in my experience, things will work out one way or another, as they always do.
For anyone reading this whose child has trouble chewing and swallowing, mention it to your Doctor as these issues are much more easily dealt with when children are younger.
When Greg’s was younger he always drooled and dribbled excessively and still does now to a degree. He would sometimes still have food in his mouth that he had eaten hours before as he had not swallowed it. I always checked his mouth properly before he went to bed just in case. Now I know both of which, are a sign of dysphagia.
Thank you for reading and I hope that this post serves to help someone looking for reassurance or answers to concerns they may have about their own child.
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Copyright © 2014 Debbie Roberts
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