Traveling for Helmets/Surgery

[amizzle]

I have a few questions for those of you that travel for surgery and some for those who didn't...

We travel every few months to get carson a new helmet. We have been extremely lucky and haven't had any "issues" with helmets so far, that required more traveling or mailing the helmet in.

Here are some things I am curious about....

Those of you that travel for surgery:

Do you travel for helmets, or did you find a local place to get your helmet?
How often do you "touch base" or meet up again with the helmet people?
Anything else you can share that might be helpful?

Those of you who don't travel for helmets(LUCKY!):
How often do you meet up with the helmet people?
What happens at these appointment?
Anything else that might be helpful?

Like I said we currently travel for helmets. We tried to get a helmet from a closer location(bad idea) and it didn't work out to say the least. I was wondering what the rest of you surgery travelers are currently doing about your helmet? I was also curious how the helmet "stuff" would work if I was lucky enough to have a helmet place close.

(not all of us are as lucky as Leina is, with her fancy new helmet :wink)

Thanks!

[myangelSGY]

We use the DOC Band by Cranial Technologies. www.cranialtech.com (http://www.cranialtech.com)
Check out the June photo album and our precious Sara Grace is in it.
Do you travel for helmets, or did you find a local place to get your helmet?
Yes, from Monroe, La to Houston, Tx fortunate that a local organization has been flying us www.pilotsforpatients.org (http://www.pilotsforpatients.org)
How often do you "touch base" or meet up again with the helmet people?
We went every two weeks for adjustments. They would check the progress comparing her head to her mold.
Anything else you can share that might be helpful?
I really don't know anything else about the other brands of helmets. The band is wonderful and it did a wonderful job.

[Tyler&Jakobsmommy]

Both my boys surgerys and helmets are 3 hours away. With Tyler we went evry 2 weeks unless we had a problem with the helmet. With Jakob the orthotist understood we had a bit of a hike so we streached us out from anywere between 3-4 weeks unless a problem came up. They had 2 different styles of helmet. Tylers was blue with a foam lining. When we first got it the top was left open intill we noticed his head was trying to grow out the top of it then they had to make a top peice for it. Jakobs was clear plastic that was completly enclosed. I think Jakobs worked alot better but may have been a little more umcomfortable. I will try and post pics of our 2 different helmets. Let me know if you can see them.
http://a856.ac-images.myspacecdn.com/images01/5/m_7a8e8b8083b7bb8c250ebd6aa5c6354f.jpghttp://a246.ac-images.myspacecdn.com/images01/86/m_28688038706d89054ce5add0b1159f45.jpg

[AuburnLocks]

My son's helmet is not post surgical so I can't comment on that, but as far as follow up... We are also using Cranial Technologies and lucked out that there is an office about 5 minutes from our house (I know, don't hate me!).

The office in San Diego sees lots of post-surgical kids since there is a well known endoscopic team at San Diego Children's Hospital that uses them. The one in Pasadena that we go to seems to be mostly Plagio kids.

We go once a week for adjustments. There was one time we didn't even last a week since he was growing so fast his face was looking all squished so we went back after just 5 days for an adjustment. Patrick has been growing like crazy and is about to outgrow his first helmet after just 7 weeks! Not too surprising I guess since he's gained around 4 pounds since we started treatment. We are waiting to see if insurance will agree to pay for a second one. At the appointments the technician looks to see where his helmet is getting tight, compares his head shape to the mold they have of his starting shape and shaves off foam to give him more room to grow. Last week, after 6 weeks, we did follow up measurements and clinical photos to help us make a decision about doing a second helmet and to submit to our insurance company. The photos are hilarious, like little baby mug shots. I'll have to post them if I can scan them at work.

We've been really happy with Cranial Tech so far. The cranio-facial Pediatrician we saw specifically told us not to go to them (he had some sort of personal beef with the previous owner or something?) but we went anyway and couldn't be happier. In just 6 weeks we've seen about a 60-70% improvement. The Doc Band (that is their trademark name for the helmet they use) is lighter and more open than some of the other types of helmets and seem more comfortable in some ways, but because they are lighter and use less foam, the kids seem to outgrow them pretty fast. Something to consider for those who may not have great insurance coverage.

[spoongirl10]

So far I haven't had any problems with my helmet. I live in maryland and there is only one place here about 25min away called StarCranial center. I go to them every two weeks for them to make adjustments. My son got his helmet 2wks after his surgery at 3 months and just turned 5 months (we are still in the same helmet). We go for a scan next monday because this one is getting a little tight. At every appt they thin out the padding, replace it, tighten the screw. They make sure the red spots don't stay for long. I'm usually there from an hour to two. Mine looks just like yours. He hasn't gotten the "flashy" one yet because they said it's heavier and will weigh him down. He might be getting that one this time.

[Bean]

Jake just got his helmet last Wednesday from NOPCO @ Boston Childrens Hospital (we live just a shy of an hour away). We have a follow-up next week because Jake's head had changed so much between the day after surgery and the day we ppicked up the helmet, that their is concern that they may have to just remake the helmet altogether. Anyway, that being said, I am not sure what to expect as far as frequent visits. The NS said we would be going once a month. On the sheet of paper they gave me it is laid out as follows:

What to expect

First Appt: Casting/scan for molding helmet fabrication
Week 2: Initial fitting/delivery of molding helmet & beginning treatment
Week 4: Follow up appt with NOPCO for adjustments & measurements
Week 6-7: Follow up appt with NOPCO adjustments, scan or measure
Week 8-14: Follow up appt will take place every 2-4 weeks until physician discontinues treatment, final measurement/scan

That's all I think I can help you with right now!