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Possible swallowing difficulties

Katherine HaywardKatherine Hayward Member Posts: 74
edited August 2016 in Disabled people
Hi everyone. I'm very worried when it comes to mealtimes. I am 30 and don't like feeling worried about eating certain foods (bread, potatoes) and cannot tolerate certain textures (very thick foods with liquidy textures such as porridge, baked fruits, some fizzy drinks, milk on its own,) also mushrooms. I notice that lemonjuice used as a salad dressing is too acidic, and anything with cream in makes me feel ill. Ive seen nutritionists throughout my life as I have an exaggerated nausea and gag reflex and drool when speaking or at anytime during the day. Really distracting when wanna eat my fiancee's delicious food as not sure what else will trigger it. Most recently, I got in touch with another nutritionist who suggested me seeing my neurologist as she thinks I could have swallowing problems related to CP, and said gag reflexes and nausea reflexes are automatic reactions the body has, so hard to control. I try chewing slower as she suggested but that doesn't really help matters. When eating, I cough a lot and eating sometimes causes nausea and vomiting. Anyone else experience difficulties like these? I have quad CP, hydrocephalus with a shunt and severe eyesight difficulties, I'm registered blind. What sorts of tests are available?
Katherine

Replies

  • forgoodnesssakeforgoodnesssake Member Posts: 308 Pioneering
    Hi, my son (athetoid CP) has a lot of problems with eating, chewing and swallowing and whilst they sound different to the issues you have, he has always been under a Speech and Language Therapist trained in eating and swallowing issues (dysphagia) for this. The dietician has been involved re making sure he gets enough calories but their area of expertise is not in the actual mechanics of chewing and swallowing.
    One of the tests my son has had is a videofluoroscopy, in whihc a little bit of something like barium is mixed with some food and then eaten and an x-ray film is then taken of the swallowing action so they can see exactly what is going on. Coughing a lot when eating may indicate that you are actually inhaling little bits of food rather than swallowing them, and the videofluoroscopy should pick this up.

    Is it possible that you have also developed some acid reflux? My son had this very badly when he was younger and I am aware it can be a real issue for many poeple with CP. Good luck.
  • Hi thanks for your reply, and the explanation of the test. Since writing this post, I have sought the help of a a nutritionist and she has also said that she's suspected I might have acid reflux & swallowing difficulties I often feel nauseous while swallowing and after having eaten. .I have yet to make an appointment with the specialists to discuss this further I'm also not sure whether me seeing my neurologist might also help with this. I, like your son, have seen nutritionists for the same reason trying to get enough calories, and also making sure my diet is as balanced as possible. I am really apprehensive about any kind of test and hope any tests they do are not too invasive or painful. Is that the only kind of test they do? Katherine
  • forgoodnesssakeforgoodnesssake Member Posts: 308 Pioneering
    The videofluoroscopy is not painful as it is simply a sort of x-ray film taken while you are eating. My son did also have a 24 hour ph study done when he was about 2 or 3. This is to measure how much acid is in the stomach and whether it is actually regularly coming up higher than it should.
    This was done in a children's hospital and involved an overnight stay as they put a very fine tube with an acid "detector" on the end down into your stomach by way of your nose. I think it can be a wee bit uncomfortable when it is inserted but should not be painful. This was left in place for 24 housr and I think it was continuusly relaying data to a computer (sorry, quite along time ago so don't remember all the details) At they end they look at the readings and can then say if you have acide relux and if so how badly. My son;s came up in the range of normal actually...
    As an adult you may well not need to stay in hospital but with young kids of course they have a habit of pulling at tubes etc and then they have to be re-fitted!
  • akkanaedaakkanaeda Member Posts: 4
    I have mild spastic CP, so nothing like as bad as you have, and a hyperactive gag reflex. Nobody has ever suggested that the gag reflex is anything to do with the CP. I don't know how relevant what I'm going to say is, but it might help you.

    I can't eat things like bananas and porridge because of the consistency. But, what I have discovered is that the tireder I am, the worse it gets. So if I get up in the morning after not having had enough sleep (for me this is about 8hrs uninterrupted sleep, may be more or less for you) then the gag reflex will be bad and brushing my teeth is impossible for at least an hour and I can't eat bread. The other problems I have which are definitely connected to the CP also get worse if I'm tired.

    I recently had to go to the hospital to get a tooth looked at, and the surgeon said he didn't want to take it out as he felt it could be filled. He said that gag reflexes can be trained to be minimised (practice putting a toothbrush on the back of your tongue, I'd guess the worse the CP the longer it will take) and this is something dental clinics do so that they don't have to take teeth out unnecessarily, plus one thing you need to remember is that the more you think/worry about it, the more the muscles contract and the more shallow your breathing gets and so the more likely you are to gag. Deep, slow breathing really does help, I've tried this and can now have a dental checkup without gagging. Anyway, what they have now said is that I am to go to a clinic where they will attempt to fill the tooth under anesthetic. I don't know if I will get to experience the gag reflex training, I'm going to attempt to try the toothbrush on the back of my tongue while breathing as slowly and deeply as possible!
  • Hi , thanks for replying. I know the tube you mean- nasogastric. I had to be fed through them after my shunt operations. I also have hydrocephalus which is where the cerebrospinal fluid accumulated in my brain making it and my head swell as a baby. My shunt is in my brain and is attached to a catheter which drains the CSF towards my abdomen. I remember the insertion being very uncomfy, more so as the tube kept coming up when I vomited (vomiting is a sign of shunt fracture/ blockage/ something not being right), my neurologist, due to the complexity of my disabilities and the fact I find tests uncomfy, may well choose to keep me in, as I think I may need an anaesthetic when they put the tube in, if that's what they decide to do. I was going to ask you if a speech and language therapist could help me with the problems I face. I do know of others with spastic CP who face the same difficulties. Mine is complex as its quadriplegia.
  • Katherine HaywardKatherine Hayward Member Posts: 74
    Hi. I've practiced the toothbrush on the back of the tongue thing for years and it doesn't work for me. Thanks for suggesting it though. I'll try the breathing technique you suggested.
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