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Grandson: Myotonic Dystrophy, Severe Autism, Tuberous Sclerosis

Posted by dgray1110 @dgray1110, Nov 9, 2018

I have a 15 yr old grandson with severe Myotonic Muscular Dystrophy, severe Tuberous Sclerosis, and severe Autism. 4 days ago he stopped swallowing, wont chew foods, wont swallow his spit just lets it pour out of his mouth....did not sleep for 53 hours straight...can no longer walk.....this was rapid and severe....before 4 days ago he walked on his own...slowly but on his own....was a great eater.....slept regular hours.....so I do not understand what has happened "all of a sudden". Any input would be greatly appreciated

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Ethan McConkey, Moderator | @ethanmcconkey | Nov 9, 2018

Hi @dgray1110 and welcome to Connect! It must be heartbreaking to see your grandson like this.

I wanted to tag fellow members @gailfaith and @robbykline as they have some experience with different types of Muscular Dystrophy.

I also wanted to share this two past discussions so you can learn more about what others have had to say:

– Myotonic Dystrophy type 2 https://connect.mayoclinic.org/discussion/myotonic-dystrophy-type-2/
– Muscular Dystrophy & Diverticulitis https://connect.mayoclinic.org/discussion/muscular-dystrophy-diverticulitis/

Back to your grandson, has his doctor said anything about these sudden changes?

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dgray1110 | @dgray1110 | Nov 10, 2018

Haven't been able to get in to see Neurologist yet. Spoke with her nurse...Dr has been out and won't be back until Monday. Said first opening is in January. Explained we CANNOT wait until January. I need answers. Why this sudden rapid decline? What am I dealing with and what can I expect so I am prepared? What is happening so I know how to take care of him? Right now he has zero quality of life and this concerns me a great deal. I need to know what we are dealing with. Just need answers. Thank you so very much for replying. You have no idea how much it means to me.

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hodagwi | @hodagwi | Nov 17, 2018
In reply to @dgray1110 "My 15 yr old grandson has had severe myotonic muscular dystrophy since birth. Nov. 6th he..." + (show)
@dgray1110

My 15 yr old grandson has had severe myotonic muscular dystrophy since birth. Nov. 6th he stopped chewing, stopped swallowing, stopped drinking, stopped walking and stopped sleeping. We have been to 2 hospitals in the Northwest and only get "there is nothing we can do for him". Has anyone seen this rapid of digression before? What can I expect? We are going home today and I have no answers......please ....if you have any experience or knowledge of this chonic illness ....please help me....

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Hi, Sorry to hear about that. My sister in law and her brother both had that. From what my brother said, it is an inherited disease. Both their parents did not have any symptoms and yet the kids got it. Her dad passed at age 90 and her mother died of cancer at age 50. Her brother died in an accident at age 40 and was active until the end. My sister in law was a small woman, with very little muscle tone and it didn't get bad until she was about 56 and she passed last year at age 59. She had one son, my nephew, who is now 30 and about 6'4'' and about 275# and a big strong muscular guy. My brother took CNA training to take care of her until the end and felt helpless to see her like that knowing that he could only make her feel comfortable. Let me talk to him and see what other medical information he has. He lives in Rhinelander, WI so northern WI.

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dgray1110 | @dgray1110 | Nov 17, 2018
In reply to @dgray1110 "My 15 yr old grandson has had severe myotonic muscular dystrophy since birth. Nov. 6th he..." + (show)
@dgray1110

My 15 yr old grandson has had severe myotonic muscular dystrophy since birth. Nov. 6th he stopped chewing, stopped swallowing, stopped drinking, stopped walking and stopped sleeping. We have been to 2 hospitals in the Northwest and only get "there is nothing we can do for him". Has anyone seen this rapid of digression before? What can I expect? We are going home today and I have no answers......please ....if you have any experience or knowledge of this chonic illness ....please help me....

Jump to this post

Any information would be greatly appreciated

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dgray1110 | @dgray1110 | Nov 17, 2018

My 15 yr old grandson has had severe myotonic muscular dystrophy since birth. Nov. 6th he stopped chewing, stopped swallowing, stopped drinking, stopped walking and stopped sleeping. We have been to 2 hospitals in the Northwest and only get "there is nothing we can do for him". Has anyone seen this rapid of digression before? What can I expect? We are going home today and I have no answers......please ....if you have any experience or knowledge of this chonic illness ....please help me....

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3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 17, 2018
In reply to @dgray1110 "My 15 yr old grandson has had severe myotonic muscular dystrophy since birth. Nov. 6th he..." + (show)
@dgray1110

My 15 yr old grandson has had severe myotonic muscular dystrophy since birth. Nov. 6th he stopped chewing, stopped swallowing, stopped drinking, stopped walking and stopped sleeping. We have been to 2 hospitals in the Northwest and only get "there is nothing we can do for him". Has anyone seen this rapid of digression before? What can I expect? We are going home today and I have no answers......please ....if you have any experience or knowledge of this chonic illness ....please help me....

Jump to this post

Hi @dgray1110, I merged the 2 discussions about your grandson and myotonic muscular dystrophy together and have associated the discussion with 3 groups: About Kids & Teens, Bones, Joints & Muscles, and Just Want to Talk. This will help bring others into the discussion.

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