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son with autism just dx with MS, need some guidance please

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    son with autism just dx with MS, need some guidance please

    My 31 one year son was just diagnosed with MS several weeks ago. He also has autism. His ability to verbally communicate is very limited, he can't tell me what he is feeling or thinking with words. I really need to know how he is feeling...what he thinks about all of this (I really believe that he understands most of what is said to him, and knows what is going on).
    As far as his physical symptoms, I think maybe his hand is numb, he has been picking at it, he's never done that before. Also, he keeps closing his eyes or rubbing them, I'm wondering what vision symptoms he may be experiencing. Sometimes he is so weak and tired he can't stand on his own, he can't get himself out of the bathtub some days, and frequently he drags his right foot/leg when he walks. His MRI showed multiple lesions, and his spinal tap was positive for MS as well.
    I'm scared for him, and angry (at who, I'm not sure), he's already had such a big hurdle in life.
    what can I do to help my son?
    thanks so much for listening, and so glad that I found someone who can really understand.
    sad mom in Illinois

    #2
    Hello, dcdnns.

    I am very sorry to hear about your son, this must be very difficult for you as well as him.

    Be careful about the water temperature, many of us are heat intolerant and a hot shower or bath can cause weakness and increase fatigue. This is will improve once cooled down.

    Your son dragging his foot is foot is known as foot drop/drop foot.

    Vision problems in MS is known as Optic Neuritis. Not everyone with MS will have vision problems due to this disease.

    I have provided a few URLs that might help in answering your questions.

    Visual symptoms:
    http://www.nationalmssociety.org/abo...oms/index.aspx

    Temperature Sensitivity:
    http://www.nationalmssociety.org/abo...ity/index.aspx

    Gait (walking) Problems:
    http://www.nationalmssociety.org/abo...ems/index.aspx

    For more information about MS:
    http://www.nationalmssociety.org/index.aspx
    Diagnosed 1984
    “Lightworkers aren’t here to avoid the darkness…they are here to transform the darkness through the illuminating power of love.” Muses from a mystic

    Comment


      #3
      Wow...that's a hard one.

      I realize since he has autism he can't communicate with you, but does he respond to instructions. My thought is, if he would allow it and feel comfortable with it, it might be a good idea to have a physical therapist evaluate what he can and can't do (that would be if he can follow the instructions the PT gives.) I've found that a PT can spot problems that sometimes a neuro doesn't even know exists. At any rate, if that would be possible, you'd know where his motor deficits are and the PT might be able to help him with those.

      Hope you find some solutions to understanding what he's feeling.

      Comment


        #4
        thanks so much

        thanks so much rdmc and snoopy. We had tried pt rdmc before the ms diagnosis, he was initially diagnosed with strokes, we will go back now that we have the correct diagnosis. Never did seem like the strokes diagnosis really fit. I was very impressed with the pt, and how much she was able to relate to my son.
        I am going to go to the links you recommended snoopy right away. I have much to learn and am anxious to do it.
        thanks again!

        Comment


          #5
          Originally posted by dcdnns View Post
          My 31 one year son was just diagnosed with MS several weeks ago. He also has autism. His ability to verbally communicate is very limited, he can't tell me what he is feeling or thinking with words. I really need to know how he is feeling...what he thinks about all of this (I really believe that he understands most of what is said to him, and knows what is going on).
          As far as his physical symptoms, I think maybe his hand is numb, he has been picking at it, he's never done that before. Also, he keeps closing his eyes or rubbing them, I'm wondering what vision symptoms he may be experiencing. Sometimes he is so weak and tired he can't stand on his own, he can't get himself out of the bathtub some days, and frequently he drags his right foot/leg when he walks. His MRI showed multiple lesions, and his spinal tap was positive for MS as well.
          I'm scared for him, and angry (at who, I'm not sure), he's already had such a big hurdle in life.
          what can I do to help my son?
          thanks so much for listening, and so glad that I found someone who can really understand.
          sad mom in Illinois

          What a big challenge for both of you!

          My nephew has autism and mostly echo's speech, does not use it appropriately. Is this where your son's language skills are at?

          I have lots of questions but very little in terms of answers. Does your son still live with you?

          I imagine you have been interpreting his behaviour for a very long time. Don't underestimate your skills at understanding what he is experiencing and expressing behaviourally.

          I am glad to hear you had a good experience with OT/PT in the past. They have been a valuable resource for my family over the years. Their interventions are practicle and reasonable.

          I wish you the best in sorting this out. Give yourself a big pat on the back for caring enough to worry about his experiences and struggles. The fact that you've done so means a great deal to him I am sure. In caring, you are creating an environment which is safe and responsive. Although he may not be able to tell you, your concern matters!

          Comment


            #6
            I don't have any advice but did want to say that I'm angry with you! I can't imagine that your poor son should have the burden of dealing with not one but two horrible diseases.

            It is truly unfair. I hope you continue to post here for whatever insight we may be able to offer.
            Sending hugs.
            He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
            Anonymous

            Comment


              #7
              Originally posted by Jules A View Post
              I don't have any advice but did want to say that I'm angry with you! I can't imagine that your poor son should have the burden of dealing with not one but two horrible diseases.

              It is truly unfair. I hope you continue to post here for whatever insight we may be able to offer.
              Sending hugs.
              Cog fog here...I had to read that sentence five times before I realized you were angry too, as she is, because her son is afflicted by both MS and autism. I kept reading it as saying, you were angry at her, and I couldn't figure out why.

              Comment


                #8
                Originally posted by rdmc View Post
                Cog fog here...I had to read that sentence five times before I realized you were angry too, as she is, because her son is afflicted by both MS and autism. I kept reading it as saying, you were angry at her, and I couldn't figure out why.
                Ooops, probably not the best phrasing on my part. Sorry about that, maybe...I'm angry along with you?
                He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true to the last beat of his heart. You owe it to him to be worthy of such devotion.
                Anonymous

                Comment


                  #9
                  Originally posted by CanadianGirl View Post
                  What a big challenge for both of you!

                  My nephew has autism and mostly echo's speech, does not use it appropriately. Is this where your son's language skills are at?

                  I have lots of questions but very little in terms of answers. Does your son still live with you?

                  I imagine you have been interpreting his behaviour for a very long time. Don't underestimate your skills at understanding what he is experiencing and expressing behaviourally.

                  I am glad to hear you had a good experience with OT/PT in the past. They have been a valuable resource for my family over the years. Their interventions are practicle and reasonable.

                  I wish you the best in sorting this out. Give yourself a big pat on the back for caring enough to worry about his experiences and struggles. The fact that you've done so means a great deal to him I am sure. In caring, you are creating an environment which is safe and responsive. Although he may not be able to tell you, your concern matters!

                  Comment


                    #10
                    hello Canadian Girl,
                    Yes, my son echos mainly, very little direct communication. He never answers a question. And yes, he still lives with me. How old is your nephew? Thanks for your kind words and encourage. It's such a help to know we are not alone.

                    Comment


                      #11
                      Haha! I have to admit that at first I thought you were angry at me Jules A. And I thought oh no, what did I do? This posting is a new thing for me
                      But I knew what you meant, thanks so very much for your kind and caring words (and hugs) Jules A. It is amazing how much comfort it has been to hear from you all.

                      Comment


                        #12
                        Originally posted by dcdnns View Post
                        hello Canadian Girl,
                        Yes, my son echos mainly, very little direct communication. He never answers a question. And yes, he still lives with me. How old is your nephew? Thanks for your kind words and encourage. It's such a help to know we are not alone.

                        My little nephew is nearly 4. He is a very loved member of our family.

                        I am interested in following how things are going with you son. Stay strong!

                        Comment


                          #13
                          Hello again Canadian Girl,
                          Your little nephew is just 4. Takes me back to when Justin was very young. So much has been learned about autism over the years. When my son was diagnosed with autism, it was still believed that it was a psychiatric disorder, caused by bad mothering, "refrigerator mothers" was the term that was used. Whew, that has been disproved many times over.

                          Much like MS I suppose, I remember in my nursing school days, 30 years ago now- MS was a diagnosis that had little room for hope. And now we have not one, but several medications to choose from. Stem cell therapy gives a lot of reason to hope as well.

                          My son has had a tough few days, he hasn't wanted to get out of bed at all. Lots of trouble walking and with balance as well. He sees the neuro on Friday, I'm wondering if a round of Prednisone would help.

                          We also need to decide which medication to try. I'm thinking Avonex, it would mean fewer injections for him. What do you all think.....

                          Comment


                            #14
                            Autism....drugs that promote hemopoeitic progenitor cells?

                            It's horrible to think that someone could be diagnosed with two diseases of autism and multiple sclerosis.
                            I've seen on television a show which promoted how a young boy with autism managed to "grow out of it" with the care of love of his parents. Exercise, diet, love, & the right medical care are all very important to healing.
                            I read a bit and am impressed with the research of those that investigate how certain drugs and lifestyles can promote the healing. Of course in promoting healing they're talking about getting our bodies to manufacture more healing STEM CELLS or hematopoietic progenitor cells (scientific words for STEM CELLS in your BLOOD).
                            You can read about it yourself by going to PubMed which is published by the US government.

                            ncbi.nlm.nih.gov/sites/gquery

                            Here's one search that I like...
                            Enter in the Search box, the line below (use "")...
                            "progenitor cells"[Title] "humans"[Title] "multiple sclerosis"
                            Click on the GO box

                            Good luck

                            Comment


                              #15
                              Originally posted by home2468 View Post
                              It's horrible to think that someone could be diagnosed with two diseases of autism and multiple sclerosis.
                              I've seen on television a show which promoted how a young boy with autism managed to "grow out of it" with the care of love of his parents. Exercise, diet, love, & the right medical care are all very important to healing.
                              I read a bit and am impressed with the research of those that investigate how certain drugs and lifestyles can promote the healing. Of course in promoting healing they're talking about getting our bodies to manufacture more healing STEM CELLS or hematopoietic progenitor cells (scientific words for STEM CELLS in your BLOOD).
                              You can read about it yourself by going to PubMed which is published by the US government.

                              ncbi.nlm.nih.gov/sites/gquery

                              Here's one search that I like...
                              Enter in the Search box, the line below (use "")...
                              "progenitor cells"[Title] "humans"[Title] "multiple sclerosis"
                              Click on the GO box

                              Good luck
                              hummm, interesting, thanks for the link and the good wishes

                              Comment

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