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Have any of you been able to have a feeding tube removed after regaining the ability to swallow food, or do you know of someone who has had this victory? I have not been able to find where someone with WD has been able to have a tube removed, so if you have, or if you have ever heard of it happening, please take a moment to reply to this message. THANK YOU.
Yes, I have in 1981 I was diagnosted WD so I got Penicillamine, but I didn't get any better, but I was getting worse, most of my muscles fails, so I couldn't swallow food and got a feeding tube and change medicines I got Solphersinc. Slowly I got better and now I have work for 36 hours a week and I eat with spoon, knife and fork.
Hi Gerard,
can i ask how long did it take you to get all your motor skills( eating, walking etc) back?
Regards
Melinda x
Hi Melinda x,
That's a question I have to think hard, because it is long ago, 1981. 28 years ago. Well I went to the Hospital in januari, after 3 á 4 weeks, I went home with Pennicillamine, but after 2 weeks I was back, it was getting worse. Februari, they gave me Solverzink, but I got very worse and get a feeding tube. I think it was March or April. And I remember that I was eating in July and I went in a Revalidationcenter in july, to learn to speak right and to streng my muscles. It took a half year. But it took years to loose that shivering. I am now 49 years old.
And what is your story Melina x ?
Yes there is no problem removing the tube once eating ability comes back. My son took the tube out when he discharged himself from hospital and we had to feed him ourselves. Everything takes a long time but slowly his intake improved and is still improving. Putting on weight is the hard thing for us. He eats full pizzas, 2 Big Macs, protein drinks, Indian and Chinese takeaway food and is still the same weight ! He lies back at an angle to eat , it is easier that way to swallow. He is waiting to get into rehab at the moment. Speech and hands are his biggest problem at the moment. He started treatment last October.
Thank you all for replying and sharing your stories. This helps give us hope. Molly is improving in many ways. She walks beautifully. She is in speech therapy and will resume occupational therapy soon. It is a slow process indeed. We are so grateful that she responds to the medications. A couple of weeks ago, she actually chewed up and swallowed 5 grapes. If we pull our kitchen sink spicket (sp?) out and turn it upside down like a water fountain, she is able to bend down and drink from it as one would at a fountain, and she is able to swallow most of the water with very little choking. We've had our water tested, and the copper content is very, very low. :)
That sound very hopeful. When was she diagnosed ? It is a whole series of little steps , some days are better than others. Our best wishes and prayers are with Molly ... and keep with the food until you find what she can eat more easily, it often means cutting up into small bites easy to get down.
She was officially diagnosed in April. Once we found out what was going on, we could understand why other things had been happening for several months prior to the diagnosis. Molly's first symptoms were emotional issues. For several months we basically chalked everything up to the stress associated with graduating from high school and beginning college. Molly was involved in a minor car accident in late Jan of this year, and after that she began having more obvious neurological symptoms that could not be written off as stress. It has been a slow process, but we are grateful she has responded to medication. She and a friend went for a walk this evening, and while they were out in our neighborhood, Molly met a lady who is a physical therapist who specializes in neurological issues, and they became fast friends. So, this lady wants to come over and show us some swallowing therapy exercises and show Molly how to get her mouth to close more easily. That is an example of how blessed we are with people who are helping us get our girl's life back. I did cut up some bratwurst into tiny bites tonight, and Molly was able to get a few pieces down! Thank you for your prayers. Our prayers are with you and your son.
Our stories are quire similar. Dr. John Walsh who is a world specialist on Wilson's says that many WD patients are diagnosed through another trauma which can be related back to the disease. James was in a fight outside our house 2 years before he was diagnosed. That was totally out of character for him. He did end up in hospital but the wrong doctor was looking at the MRI scans. The high spots were there but not picked up. Like Molly it was only when the neuro symptoms worsened and could not be ignored that they picked it up. Molly is still in early stages .. its now down to love , care and the meds taken properly. Best regards to her.
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