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ToastieSimons
member
Think we might finally be getting to the bottom of this head banging (LONG)
ToastieSimons
member
EEG-1 hour drive to facility
MRI- 2.5 hour drive to facility in a freak snowstorm
New Glasses-$170
Physiatrist-$30
ENT and hearing test- $30
numerous therapist consults.
And we're finally getting there. Our private PT actually was the one last night who seemed to actually have a suggestion that seems to be working!!!
Up until now we were ruling out every medical reason. All the professional opinions seemed to be divided in two. One group said completely sensory seeking, the other said it's just a behavior. Ignore and he'll outgrow it.
We did a sensory diet for 2 weeks. Probably every 15-20 minutes I would engage him and give him massive amounts of sensory/vestibular input. Swinging, bouncing, dancing, rocking, jumping, upside down, rocking. You name it. I was exhausted every day.
It didn't work. He was still head banging for the majority of the day. Then friday, for some reason, he had a great day. He banged his head twice and stopped both times when I called his name or called him something silly.
Yesterday was horrid. Absolutely horrid. He spent a lot of time in his crib because he WOULD.NOT.STOP. head banging. Last night, our private PT seemed to really try to get to the bottom of it. He was screaming, banging his head, refusing to participate. We had his walker there so she decided to let him walk a bit. He calmed down. So she stopped and let him choose "walker or toy". He clearly chose the walker by reaching for it and being happy with his choice. The next time he chose walker again, happy with his choice. The next time, toy, still happy with his choice.
She really feels that he is cognitively ahead of his physical skills and is getting very bored, frustrated and angry. Angry and frustrated the he can't get his body to do what he wants. He's bored because the toys that he can play with independently are doing nothing for him. They're the same toys he's played with for over a year and they play the same songs and do the same stuff. It kind of makes sense too. Right around Christmas he started pulling to stand really well and tall kneeling and crawling much better. Then we got sick for like 2 weeks on and off. About a week later when he was fully recovered is when the head banging started. I've also noticed a lot of cognitive gains in him recently. Looking back it makes sense. What I took as shaking his head for comfort or self soothing (like DS1 does) was actually him saying "no". But because he doesn't have the physical skills, his whole body was shaking left and right, not just head so it looked different.
Our physiatrist recommended a developmental pedi and I'm hesitant to add another dr to the mix. They have a rare diagnosis. We have a great neurogeneticist at CHOP who looks at them completely. Every year they get eval'd by ST, OT, PT, genetics and the neurogeneticist. He wholly monitors their nuerological issues and their development as a total. He also has 2 other patients with the same diagnosis. I'm not sure what else a devel pedi could offer us. I will be happy to add a devel pedi when we got to school age if the boys are struggling in school or with an issue that seems outside their diagnosis.
To my boys: I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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Re: Think we might finally be getting to the bottom of this head banging (LONG)