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At a loss. Head tilt issues anyone have these?

My son is 15 months old. At birth diagnosed with mild HIE, hyper/hypotonia. At 5 months was diagnosed with mild myelnation delay( mri) and developmental delays. Currently has speech delays ( barely babbles, no words, mostly screeches). Macrocephaly ( 20.75 inches, 4 deviations)

He has for the past 6 months or so been tilting his head to his right side and resting on his shoulder randomly for 5-10 seconds.seconds.  Lately it’s been causing him to fall over while walking and the tilting has increased.His neurologist office says it’s normal but something does not seem right to me. He’s had 2 EEG’s showing no signs of seizures.

We have tried to get recordings but the episodes don’t last long enough to catch on video.

Anyone have any suggestions as what this could be, what I should be asking or am I being overly paranoid. Doctors are not taking this seriously so it’s very frustrating.
2 Responses
973741 tn?1342346373
Hi.  I have a son who has developmental delays and motor planning difficulties.  He is now 15.  But one of the most valuable things we did was early intervention.  Are you in the states?  There is a program for birth to age 3 that is great.  Normally you enroll through your pediatrician and they will begin evaluating her and offering therapeutic services. Would occupational therapy help her, for example?  Low tone is often helped with OT. We did OT for over 6 years.  This link has several ideas for therapy (ot is listed among others for low tone, hypotonia little ones) https://www.webmd.com/baby/hypotonia-floppy-infant-syndrome#2.

My son has sensory integration disorder which is the culprit for many of his issues he's had. That involves issues with the nervous system working properly.  I will tell you now that at 15 he is an athlete and straight A, self sufficient student in high school.  Early intervention is really key though to getting on the right track.

I'm happy to offer any more info that I can.  Perhaps your son has the same types of issues mine does with his sensory system.
973741 tn?1342346373
So, I wanted to touch base and see how your child is doing?  Come back with an update please.
2 Comments
We still have not had any idea why he tilts his head. We showed a video on an HIE support group and a member suggested a possible Cortical Visual impairment. He has an MRI at the end of the month and will see an ophthalmologist in November for an evaluation.
Wow, a lot to deal with.  Visual disturbance is part of the nervous system.  Or it 'can be'.  Let me know what happens next.  I hope it all works out and will be following!
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