Friday 11 December 2015

Videofluoroscopy (Swallow test)

December 11th 2015

So much for keeping the blog up to date - as per our lives we have been so busy. I have lots to tell you, but today I am going to concentrate on Dregans most recent hospital appointment.

First some education (yay!). Myotonic Dystrophy affects practically all the muscles and organs in the body, but you can never tell what is going to be affected in each person. This is what makes it such a dangerous and complex disorder, because we need to keep on top of all the possibilities. The main cause of death for patients with DM is Aspiration Pneumonia: Infection in the lungs caused by swallowing food/drink into the lungs instead of down to the stomach. People with DM often have reduced cough capacity, due to the wasting of the muscles, so once an infection is there, it is hard to cough it up, and stop it settling on the base of the lungs. Dregan is allergic to the main antibiotics, so it holds that extra danger for him.

I believe its estimated to be close to 47% of patients with DM (whether they are diagnosed or not) die from Aspiration Pneumonia. This is NOT something to be taken lightly! There is nothing we can do to cease the progression of the disorder and stop the muscles wasting, but we can help to try and avoid the danger...once we know it is there!

So, Dregans link to this is that he has had hiccups regularly since he was a baby - often at every meal! He coughs and splutters when eating, and often says 'It did go down the wrong way'. There is a test called a 'videofluoroscopy' which can be done to see how the swallow function is. We have been asking for this, on advice from specialists, for 12 months. The test has to be asked for by the speech and language therapist. Unfortunately, this is where we have hit a barrier. Long story (and many arguments) later, we went to our Neurologist and he said he would write to the correct department. With the wonderful support from our Neuromuscular care advisor, we received an appointment , despite the speech therapist saying she doesn't think there is any need because she watched him eating at school. We explained the complexity of the disorder, and that the problem is that people are often unaware there is a problem, but in Dregans case, we do see there is something...I said we are NOT going to stop asking so she might as well write the letter....

I actually was starting to feel like maybe I'm over reacting again, and that we were being treated like 'those parents', and it was really getting me down. But, I said, you know what, if it shows up as everything is ok - I don't need to worry anymore for a little while!

Well, I was right! Unfortunately Dregan failed the swallow test (Oh my, I am so angry at the speech therapy department!!)

It would seem that the sphincter muscle in Dregans throat is affected by the Myotonia, and isn't opening, so the food is gathering there. Also, when he was drinking water, it is Aspirating into his lungs. We saw it clearly on the screen. The scary thing is, he showed no reaction. The specialists who were in the room said this is the dangerous thing, because he is completely unaware of it. She said we did the test while Dregan was 'at his best' sat up straight, concentrating and alert, so the worry is how it is affecting him when he is tired, slouched, weak, etc....

So, there is a 2 part problem! We are waiting for the official report and advice, but honestly, I don't really know what we do from here. This is something I haven't researched so deeply in to, but it is a serious life threatening issue and we need to treat it as such. The initial advice was to try and avoid thin drinks, (such as water, pop, juice, etc) and get some drink thickener to add to them. I am not sure where to get this, or what it is, or how much to use, so need to get some advice.

I am heartbroken because, as we were told, this will only get worse. I really don't want to have to stop Dregan drinking his favourite drinks. He doesn't get pleasure out of a lot of things, I fear that food and drink is a simple pleasure that would make a big difference if it was taken away. You don't realise how simple a nice glass of coca cola is, until you're not really allowed it.

I'm sure Ill update again later when we know more....

x




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