Should I be concerned about this? Head tilt/rest

KSchall
KSchall Online Community Member Posts: 18 Contributor
edited October 2021 in Rare, invisible, and undiagnosed conditions
My son who is now 15 months old was diagnosed with Mild Hie at birth, mild myelnation delay at 5 months and speech delay as well as both mild hypo/hypertonia at birth.He also has macrocephaly ( 4 deviations)

Hes walking now but not speaking or Evan really babbling.

My concern is that he tends to tilt/rest his head to the right shoulder randomly and only for a few seconds at a time. Most times his right arm will shake a little.When he’s walking it causes him to fall over.

At the 6 second mark and 18 second mark ( if I put the vid in right lol).

https://share.icloud.com/photos/0_QPxR6kx1_6ysIpvhv5QUhhg

The neurologist nurse says this this is normal but to me something does not seem right. This is while he’s eating but the behavior does appear at random throughout the day.

Anyone have any thoughts? Should I be concerned or am I overly paranoid in this?

Comments

  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @KSchall, unfortunately it is very hard for us to say, due to not being health professionals. It's good that you have been able to see a neurologist nurse. If it persists and you feel it's not right then I would advise getting a second opinion.

    Please do let us know how you get on. :) 
  • KSchall
    KSchall Online Community Member Posts: 18 Contributor
    Chloe_Scope said:
    Hi @KSchall, unfortunately it is very hard for us to say, due to not being health professionals. It's good that you have been able to see a neurologist nurse. If it persists and you feel it's not right then I would advise getting a second opinion.

    Please do let us know how you get on. :) 
    The odd thing is he does have a neurologist, but I think it was the neuro’s 
    nurse that reviewed it last Thursday and told us it was nothing to worry about.

    We received a phone call last night from the neurologist office asking us to come In tomorrow for a visit. He was originally scheduled for end of next month. I asked for an explanation as to why it was bumped up and all I got was  the doctor reviewed the vid and asked the appointment be made.

    So now I’m probably a lot more worried than I should be due to lack of explanation.

    thanks for the reply 
  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @KSchall, it's understandable for this to cause you to worry. I hope they'll be able to clear things up tomorrow. You never know, they may have just got a cancellation or something like that. :)

    I hope tomorrow goes well and you know where we are if you need anything.

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