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Still lost, but we still can’t figure out his head tilt/abnormal head position.

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    Still lost, but we still can’t figure out his head tilt/abnormal head position.

    I hope this post finds everyone well, it’s been awhile.

    Our son turns 3 in April, and still has issues with head tilt.

    His pediatrician has not figured it out
    His ENT has not figured it out
    The low vision clinic we go to for his cortical vision impairment insists it’s not vision related
    Neurology has no idea why
    Both PT and OT can’t come up with a reason when he was seeing them.

    He had a mild HIE event at birth, with a small amount scar tissue on his brain. He has seizures but undetermined the cause( last one in Nov 2020). Diagnosed with hypertonia and hypertonia. Non verbal, CVI. Mild myelnation delay that has since been resolved. He is currently no verbal but in the process to start using an AAC device.

    His head tilt is not constant, but does it briefly throughout the day. Will often play games or watch his shows on his IPad upside down or sideways. Will stand up and watch TV with his head resting on the arm of the couch. He has been doing this as far back as I can remember.

    I’ve run out of ideas and doctors to talk to. I think both medical and family think I’m nuts and am reading too much into this and there is nothing wrong.

    Is there anything I could be missing, a specialist I have not thought to see yet for him?


    Thoughts are appreciated ( even if it’s to tell me I’m crazy)
    Last edited by Lostparent; 03-31-2021, 04:04 AM.

    #2
    ((((((Lostparent)))))) ~

    You are not crazy! I am sure this is driving you around the pole, and you think it will make you crazy, if you don't get an answer or an explanation. Or, even a guess, from some expert.

    Has he had MRIs, ultrasounds, etc. to determine any joint deformities? If he has low tone, he will have trouble holding his head upright. I'm just stating the obvious here, so I'm not contributing much to solving the mystery.

    I could venture guesses all day and night, but it could be anything causing this tilt. It could be a form of seizure activity. Like a drop seizure. It could be related to a weakness in his muscles. Has his hearing been checked? He's seen an ENT, so I assume it has.

    I'm so sorry that I don't have any guidance or advice for you. I completely understand your frustration. Jon and Michael weren't able to communicate verbally to me where their pain was, or what they were feeling, or answer questions as to why this thing or that thing happened. It is so hard, because we want to do something, anything to help our children.

    Please stop by more often, and let it out. You need to vent, you need to share, and if we don't have answers, we have open hearts and compassion and understanding.

    Your son, you, your wife and family are in my prayers.

    Love & Light,



    Rose

    *Virtual Hugs Are Germ-Free!



    THANKS!
    Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

    Comment


      #3
      Thank you for the reply

      I’m convinced it’s vision related, but even after a 2nd opinion I have yet to find a doctor who agrees.

      He has had several EEG’s( no abnormalities) 3 MRI’s that have shown some scarring but nothing that would cause the tilt according to Neuro. His last hearing test was in February and came out fine.

      Whats frustrating is that I keep hearing wait until he’s 3 and we can do different test. He’s 3 in April I doubt a month or 2 would make that much of a difference.

      Will probably take him to a pediatric orthopedist next, after he turns 3 because apparently that’s the magic number.

      Comment


        #4
        Forgive me if I brought this up before. If he has a mix of hypertonia and hypotonia the head tilt could easily be from the muscle tone issues. I'm hypertonic and sometimes if I'm not paying attention whole body parts shift in odd directions including my neck. Has he been tested for conditions like dyspraxia? Dyspraxia is often not diagnosed properly and effects muscle tone. I know someone with dyspraxia who was wrongly diagnosed as hypotonia until he was a teen.
        Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
        My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

        Comment


          #5
          Originally posted by funnylegs4 View Post
          Forgive me if I brought this up before. If he has a mix of hypertonia and hypotonia the head tilt could easily be from the muscle tone issues. I'm hypertonic and sometimes if I'm not paying attention whole body parts shift in odd directions including my neck. Has he been tested for conditions like dyspraxia? Dyspraxia is often not diagnosed properly and effects muscle tone. I know someone with dyspraxia who was wrongly diagnosed as hypotonia until he was a teen.
          Not to my knowledge or memory ( do much to keep track of).

          In relation to his speech issues apraxia or ataxia has been mentioned, but I get the two confused. It has to do with muscle control of his mouth and tongue.

          She also suggested another EEG, which have always been torture for him but this one would be at home with video. Which previous ones have not been, but he did have a 24hour EEG with video last year.

          Comment


            #6
            Originally posted by Lostparent View Post

            Not to my knowledge or memory ( do much to keep track of).

            In relation to his speech issues apraxia or ataxia has been mentioned, but I get the two confused. It has to do with muscle control of his mouth and tongue.

            She also suggested another EEG, which have always been torture for him but this one would be at home with video. Which previous ones have not been, but he did have a 24hour EEG with video last year.
            Thanks! You probably mean apraxia where the brain and muscles do not communicate well. Dyspraxia and apraxia can be confused by medical professionals in the USA. He might have dyspraxia and was misdiagnosed as apraxia. Ataxia is a balance problem and can also effect muscles involved in speech and cause slurring and stuttering. Everything your son has sounds like a neurologic condition and since he watches TV with his head turned to the side it may be that his brain has trouble filtering neurologic input and tilts to get a different sensory input even if eyes, hearing etc are fine. Checking for seizures within the environment where they likely occur (your home) is a good idea since sometimes a change in environment like a hospital can change how the body reacts. I was told this when I had EKG done on heart not EEG but sounds like it could apply to EEG. It could be that the head tilt is neurologic but not actually a seizure. Tell us if EEG brings up anything??
            Last edited by funnylegs4; 04-03-2021, 09:16 AM. Reason: spelling errors
            Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
            My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

            Comment


              #7
              Hi everyone, My son has a cortical visual impairment meaning that his brain does not process visual information properly - there is nothing wrong with his eyes or optic nerve etc. A Cortical Visual Impairment (CVI) is hard to diagnose and many doctors said our Nick was fine until we brought him to a specialist cerebral centre in London UK (The Wolfson Ctr) and they did a full day assessment and diagnosed the CVI. My Nick looks up to listen because he can't look and listen at the same time. He will tilt his head to screen out visual information that is cluttering what he wants to see. His vision works best if he is looking at a familiar object on a plain background. For example, he recognized a fork if it was drawn with thick black lines on a white background. But something like trying to find a fork in a "Where's Waldo" background would be impossible. I think the thing to do now might be to try to figure out if there is intention or accommodation that your son is doing when he tilts his head. What are the triggers for that action - follow his eye gaze and try to see what he is looking at. Informally check how he visually tracks left to right, up and down etc. You may not get to the root of the problem immediately because it sounds like a hard diagnosis to make, but you can be gathering information and figuring out how to help your child see in his best possible way. All of this of course is based on my own experience with my son so may not be relevant to you - but in case it rings true and familiar, I thought it worth mentioning. Good luck!!! Donna
              Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
              Check out my blog: http://www.donnathomson.com

              Comment


                #8
                Originally posted by Donna Thomson View Post
                Hi everyone, My son has a cortical visual impairment meaning that his brain does not process visual information properly - there is nothing wrong with his eyes or optic nerve etc. A Cortical Visual Impairment (CVI) is hard to diagnose and many doctors said our Nick was fine until we brought him to a specialist cerebral centre in London UK (The Wolfson Ctr) and they did a full day assessment and diagnosed the CVI. My Nick looks up to listen because he can't look and listen at the same time. He will tilt his head to screen out visual information that is cluttering what he wants to see. His vision works best if he is looking at a familiar object on a plain background. For example, he recognized a fork if it was drawn with thick black lines on a white background. But something like trying to find a fork in a "Where's Waldo" background would be impossible. I think the thing to do now might be to try to figure out if there is intention or accommodation that your son is doing when he tilts his head. What are the triggers for that action - follow his eye gaze and try to see what he is looking at. Informally check how he visually tracks left to right, up and down etc. You may not get to the root of the problem immediately because it sounds like a hard diagnosis to make, but you can be gathering information and figuring out how to help your child see in his best possible way. All of this of course is based on my own experience with my son so may not be relevant to you - but in case it rings true and familiar, I thought it worth mentioning. Good luck!!! Donna
                Thanks for the response

                It is unfortunately really hard to catch, as he only does this for a few seconds at a time, but we will often catch him as he starts to watch tv or video. Sometimes while looking at pictures.

                If he’s watching something or playing a game on the iPad he will often have it turned sideways or watch it upside down. Yet when he uses the iPad for AAC trials he’s fine.

                Comment


                  #9
                  If I did this right. A picture of him playing on his I pad
                  You do not have permission to view this gallery.
                  This gallery has 1 photos.

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                    #10
                    Thanks for the photo! It seems that whatever visual/spacial issue your son is having has to do with how his body responds to screens which is common in a lot of neurologic conditions. Screens generally have blue light or flicker which can make them hard to look at. What is on the iPad screen when he uses AAC that is different from regular iPad use? Different fonts?
                    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                    Comment


                      #11
                      Originally posted by funnylegs4 View Post
                      Thanks for the photo! It seems that whatever visual/spacial issue your son is having has to do with how his body responds to screens which is common in a lot of neurologic conditions. Screens generally have blue light or flicker which can make them hard to look at. What is on the iPad screen when he uses AAC that is different from regular iPad use? Different fonts?
                      We are in trials still for his AAC, but the 2 he has been using have different visual set ups but seems to do well with both.

                      Comment


                        #12
                        Originally posted by Lostparent View Post

                        We are in trials still for his AAC, but the 2 he has been using have different visual set ups but seems to do well with both.
                        I'm glad you are setting him up with AAC early on in his life, he will be grateful for it especially when he looks back on it at an older age. So the AAC looks visually different from say an iPad video or game he uses for fun?
                        Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                        My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                        Comment


                          #13
                          Another frustration

                          ST wants to increase his therapy sessions which are currently bi-weekly to twice a week. Unfortunately while my health insurers is great in a lot of aspects, therapy is not one of them as he is limited to 25 sessions a year. There is no way we can afford that many sessions. Talking to our insurance rep they can’t find any language regarding AAC devices. So I have no idea if they will cover any of the cost.

                          Comment


                            #14
                            Originally posted by Lostparent View Post
                            Another frustration

                            ST wants to increase his therapy sessions which are currently bi-weekly to twice a week. Unfortunately while my health insurers is great in a lot of aspects, therapy is not one of them as he is limited to 25 sessions a year. There is no way we can afford that many sessions. Talking to our insurance rep they can’t find any language regarding AAC devices. So I have no idea if they will cover any of the cost.
                            If you are in the USA this service can be provided in a public school free of charge once he reaches Kindergarten age. I have no idea what is provided below the kindergarden age.
                            Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
                            My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

                            Comment


                              #15
                              Hello, I'm a little late weighing in on your post but I've been reading them. Has your son been evaluated by a Physical therapist and an Occupational therapist? Both of these support people could possible have some ideas as to what's going on. Especially an occupational therapist. It may be worth getting something set up. I live in NY and for children younger than Kindergarten we have Early intervention. It's free of charge and if an evaluation supports the need then at 3 your child can attend preschool and get all the supports needed free of charge. I don't know what other states do but there may be a similar program.
                              Mary Grace

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