Monday, September 30, 2013

Jack Needs A Helmet

I took Jack to the neurosurgeon because his physical therapist said she is concerned that his torticollis is not responding to therapy as much as she had hoped. Jack's torticollis was so bad at first and it got much better right away with therapy. It wasn't completely better and he seems to continue to want to hold his head to his right side. Since he does this his head is developing an odd shape.

The neurosurgeon examined Jack. He said he is generally against helmets. He feels that a baby's head shape will get better by itself as the brain grows and they start spending more time on their stomach.
He also said that he felt Jack was an exception to this. He said Jack had as bad a case of torticollis and plagiocephaly (misshaped head) as he has seen. He said that since Jack is not yet rolling over and we don't know when he will, that it might not self correct. There is a small window of time where the skull is soft enough to correct the odd shape and we may miss it if we don't act soon.

He gave me a prescription for the helmet. I need to take him to an orthotist where they will make it for him. I am hoping they will figure out a way that it can work with the hearing aids and then the implants.

I feel so bad that Jack has to endure all these treatments. He is a happy guy and doesn't seem to complain much but it seems so unfair. I am happy that he is getting it all now and I remain hopeful that he will progress to the point that he doesn't need more than the cochlear implants by the time he goes to school.

Jack is ten months old now. He is still not able to roll over. I keep being assured by all the therapists that he does not have cerebral palsy. I remain unconvinced. I don't get any answers when I ask why he is not progressing. He has therapy four times a week and I do the exercises with him as much as possible yet he does not seem to be getting much better. I am looking for different specialists to take him to to see if I can get any new ideas.


  1. I am so sorry you (and Jack) are having to deal with all of this. It is so disheartening to just have one thing after another, I certainly understand. If you are really worried about CP, or something similar, can you find a doctor that specializes in its diagnosis just to be sure. It comes in such gradations from very mild to severe, I would be worried just like you are. I hope his helmet can fit ok with his HAs/CIs. Does the doc know how long it will be needed? Hugs to you, its a lot to deal with.

    1. Oh sorry, just reread your last sentence that you're looking into different specialists. I hope you get answers.

  2. I have an appointment with a pediatric neurologist who is supposed to specialize in developmental delays. I am hoping he knows what is going on. Most of them all have a wait and see attitude. Unfortunately the appointment is 3 1/2 weeks from now. Thanks!

  3. certainly have been through a lot.
    Only good things from now on have a lot to smile about.

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