Emily's upcoming doctors. Appointment

[joneshockey]

Hello All~
Tomorrow I will find out weather or not Emily will need to have a helmet made for her.... She has an appontment to see an orthopedic tomorrow afternoon. I guess they will be scanning her head to see where the flat spots are and if it is severe enough to need to be fitted for a helmet. She not only has hydronephrosis but toricollis (a head tilt) as well, which causes her head to be somewhat mis-shaped on one side. Has anyone ever had experience with this before? I have heard that if one is needed that they cost around $3,000 and that most insurances don't cover them, since they are mostly for cosmedic reasons.

 

[cubsgirl]

I don't have any first-hand experience but my best friend's nephew had a helmet for several months starting when he was about 6 months old. I have no idea about whether it was covered by insurance or not. He is a totally normal 12 year old now.

Best of Luck. Emily is sure a trooper!!

 

[HaoZi]

No clue, but push the doctor to put it in writing that it's for medical reasons. Whole lot to go through so early!

 

[susiestar]

No real clue on the helmet, but I would push the doctor to insist it is medically necessary and to appeal the insurance decision. I am sorry not to have posted on your other threads about her, but I HAVE kept all of you in my prayers.

Is the head tilt called "torticolis"? If so, it can cause real pain from muscle spasms. I do know that some adults are treated with botox for it. The botox relaxes the muscles and keeps them from pulling the head to the side and relieves the pain that it causes. I am sure that she is too young for botox for it, but it is something to keep in mind.

 

[Mattsmom277]

I was never given a name for what happened to my Matt's head as a baby. His head was shaped fine at birth but changed a few months later and progressively became worse during his first year. He was fitted with a helmet as well for many months, but it was due to head banging. They were never sure, but thought he banged his head due to pressure (headaches). In spite of seeing a neurosurgeon (they finally ruled out water on the brain, cysts, tumors, eventually thought his "soft spot" had closed up too early, turned out not to be the case though, no reason was found) and a plastic surgeon (who had planned for a series of reconstruction type operations), nothing medically actually was performed. He stopped the head banging on his own. He skull never magically corrected itself but with hair growth it was hard (next to impossible) to notice the misshapen nature of his skull. I opted not to have the reconstructive procedures and still think it was a good decision for him. Had the problem been more noticable, I would have.

I have no clue about insurance in the US but I hope the cost of the helmet is covered or much less than you have been thinking it is. Ouch!!! Keeping baby Emily in my thoughts!!!

 

[Hound dog]

Not had any experience with the helmet and no clue what the philosophy is for it.

Bff's son had toricollis as a young infant and it caused one side of his head to flatten drastically because he favored that side and she just let him stay on it, not realizing it would flatten out his head. I'm not sure they used helmets back then, or if they did no one suggested it. We kept turning him off that side in hopes of rounding out his skull bones, and PT worked with him over the muscles as it was one of the major ways he was diagnosed with cerebral palsy. But this was 11 yrs ago too and I'm sure things have changed since then.

When you do get the helmet, have your list of questions ready, no matter how silly some of them may seem. Some docs are great about explaining, others just plain don't really take the time. I always had a long list of questions when I took Travis to the docs, and trained bff to do the same for her son. It helps to make sure you're doing what you should be doing with no misunderstandings or info left out.

Like my docs, big brained specialists they were, never thought to tell me that Travis visiting the neuro clinic at children's every week was to keep a close eye on his progress to diagnosis him with CP. After about 6 months of those PITA appts that seemed to be for nothing except Travis shocking them to death with what he could do that they kept telling me he couldn't.....and not one of them taking the time to explain to me he was only doing them due to rigid muscles......I got fed up and stopped going. Travis waited another 12 yrs to get his diagnosis. Just because I had no experience with CP and didn't know the right questions to ask.

So don't be afraid to drill them on the theory of how this helmet works, what are the pros and cons, how best to use it, ect.

And give lil Emily smoochies from her Auntie Hound, she's such a lil doll baby. And always in my prayers.

Hugs

 

[joneshockey]

Thanks for all your comments! Her appointment went ok , however they decided that they wanted to wait 2 1/2 more weeks before doing the head scan.... they are hoping that her neck and head tilt improves some with PT between now and then. He did think that she was going to need one and he was optimistic that my insurance would pay most or some of the cost. Her next appointment is on Sept 2. Estimated cost $2500.