We Got a Script for !

[Guest guest]

,

That's great news! Sounds like your ready to go. :-) And glad you got the insurance thing settled, too, so you won't lose time waiting on answers. Great advice from your friend...be "kindly tenacious" to get what you need for your children. I'm going to remember that! Early on, we were anxious about getting started with the helmet - and then we were surprised how relieved we were when he finally was wearing it. We could finally rest because we knew his plagio wasn't getting worse..only better. There's much comfort in that. Let us know how the trip to CT goes.

Jill

Cade's mom (11 months, DOC Band 09.29.09 - today...we may be graduating this afternoon!)

Austin, TX

[Guest guest]

That's great news that you got your son a script. I also do not think you are

crazy for flying to CT for his treatment. I would do the same if in your

situation. The thing that would concern me is the CAT Scan that the neurologist

recommended. In my opinion this seems very unnecessary, especially if the

neurologist was almost 100% sure that his sutures were open. Why would he

subject him to a potentially dangerous procedure like a CAT scan? My son's tech

at CT felt his head, and said she could tell that all his sutures were still

open. I would do a little research before subjecting your son to this sort of

procedure. There is an increased risk of cancer in children who are exposed to

this level of radiation. Here is a link to one source. Best of luck to you.

http://www.cancer.gov/cancertopics/causes/radiation-risks-pediatric-CT

>

> Just thought I'd post an update on 's appointment with the neurologist

yesterday, especially since a few of you asked for one. Sorry in advance if

this seems to detailed!

>

> The appt. was a little overwhelming; I thought we'd just go in and get right

to the head shape. Instead, the neurologist (who we know a little on a personal

level--he and his family go to the same church as us and I know his wife fairly

well) wanted to thoroughly check on all kinds of things I hadn't considered. I

appreciate that he was thorough, but it's sometimes alarming to have bring up

other possibilities. He ordered a blood test to rule out any chromosomal

abnormalities (this might be more to do w/ an epicanthal fold he noticed than

with the plagio) and a CAT scan to confirm that the skull hasn't fused at all.

He said he's nearly 100% sure that it hasn't, but wants to be certain. I was

under the impression that most doctors could tell this w/out a CAT scan, but I

don't mind confirming. It just means will have to be sedated, and I

don't love the idea of that, but we'll do it, and we need to do it before he's

banded.

>

> The neurologist confirmed the plagio diagnosis, brought up and then ruled out

a dozen other scary things, then said he'd refer us to a neurosurgeon who would

probably recommend cranial banding. As long as the CAT scan confirms that the

skull hasn't fused, why do I need a neurosurgeon?! I felt sure that this would

delay us too much, so I pressed the doctor. We told him we agreed that

would need banding, and that we wanted to start right away. He said he hasn't

ever prescribed banding,even though he agrees it's often needed; he just refers

to the neurosurgeon so that the neurosurgeon can be the one to coordinate the

process. (Lesson learned: it's probably best to go straight to a pediatric

neurosurgeon, not a pediatric neurologist). I thought that seemed an

unnecessary delay. I told him we already had an appointment with CT in Southern

California next week for an eval and then possibly the DSI, and that they are

specialists who ONLY do cranial banding (i.e., they know more about severity of

the plagio, chance at success with the band, etc. than he--or likely the

neurosurgeon--does). He said, " great, what do you need? " I told him we needed

a prescription for the band, and he wrote it for us. I felt like we FINALLY had

a victory with a doctor! I think I've learned my lesson not to just always go

w/ a doctor's plan but to actively participate in, and sometimes sway, the

development of the plan.

>

> We feel a lot of peace about our decision to move forward with a band for

, and now I'm relieved that we have the doctor's go-ahead. Now we just

need to get in for a CAT scan by Monday, which is really pushing it, but as a

friend of mine (who has several high needs children and deals with medical stuff

all the time) keeps reminding me, you have to be " kindly tenacious " to get what

your kids need.

>

> On the insurance issue, we sent in a letter for pre-determination but have

already been told over the phone that if there's an exclusion for cranial

banding written into our policy, then there's no way around it--no way, no how.

So we're moving forward without waiting on the insurance denial. We may try

asking the employer to request an override of the exclusion, but I don't hold

out much hope on that front.

>

> We go to Cranial Tech in Pasadena on Tuesday. It's a 6 hour drive, so we plan

to fly for appointments (just an hour flight, and you can get round trip tickets

for around $100.) Travel expenses for medical reasons can be taken out of a

flexible spending account, so even though we won't be able to pay for the helmet

out of our FSA (we've exhausted our 2009 FSA $ and will be incurring the cost in

Dec. of this year), we'll at least be able to put $ in there for 2010 to cover

the travel we'll be doing. We have a lot of family in Southern California and

will already be down visiting them for probably 3 times during what I am

estimating will be 's course of treatment (though we don't know for sure

of course.) So that cuts down on the number of flights he and I will have to

take. If you think I'm crazy for traveling so far, please don't tell me now!

I just feel really good about putting in the experienced hands at CT.

>

> The best thing that's happened to me in the past week, amidst my devastation

at realizing 's condition and my awful guilt at not having taken action

sooner, has been receiving the wonderful support of so many on this forum who

took time to share their experiences, opinions, and recommendations. Without

all that help, I'd still be spinning my wheels, and we'd be waiting a month or

two just to get into the neurosurgeon's office. So a huge THANK YOU to all you

great plagio parents!

>

>

> Mom to , 8 months old

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