update on my

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Hi everybody. I've been reading posts lately, but not posting much because I have been so busy, too busy to collect my thoughts and write everything that needs to be said.

Since the wonderful episode with the military denying us access to the base to get our son's helmet adjustments, thus being unable to wear it anymore, I got him into Children's Hospital in Seattle on December 14th. They, of course, were very nice, but gave me the schpele about him being older than they usually recommend for helmet therapy. I basically told them that I don't care. I need to do everything I can, even if it is just a mild percentage of correction that we get. The nurse practitioner agreed that he had the asymmetry in the face, but other than that, kind of nonchalantly said it wouldn't be that "big of a deal" if he still had the misshapen head when he is older, due to his great personality. Well, the way I feel about that is that I'm pretty sure most babies are pretty happy with themselves no matter what. Babies have no concept of what they look like or what others think of them. But as they get older, that's another story. I have been told I was the happiest baby. But when I was going through my "awkward stage," and I had a normal shaped head, I reverted into myself and felt self-conscious and people made fun of me for my crooked teeth, weird haircut, etc, etc. And I didn't have facial assymetry or a flat head! Yes, my son has a great personality now and is very happy, but what is he going to feel like in the second grade if this doesn't get corrected? I have had two drs tell me that his wonderful happy disposition will conquer all. That is true now, but how long will that last when mean kids break his spirit?

I even brought up the fact of him being a boy and wearing sports helmets...she says, "Well, you know, if a football coach wants him bad enough, he'll just have to make him a special helmet." Uh, no! As competitive as sports are, I just don't see that happening. I want my son to have the same opportunities as everyone else.

Well, anyway, she went and got a dr to look at 's head and the dr thinks the back of his head resembles the way a baby's head looks with saggital sutures closed. This frightened me, because I have never once even considered the idea of him having cranio. The military only did x-rays, which, as much as they could tell from the x-rays, they said they didn't see any "signs" of cranio. So we left it at that. Now with my little boy turning a year old on the 17th of this month, and we have been dealing with this since he was six months with no results, is scheduled for a CT scan this coming Thursday. I am scared. I went on the capps website and saw pictures of the babies with the saggital closures, and I was amazed how closely they resembled 's head. I don't know if you'll understand my description, but his head is kind of long if you look at it from the top, and then at the back, it curves down instead of up like most babies. That's what a few babies on there looked like. He has to have a 2D and a 3D CT scan done so they have to sedate him. I feel bad about that too...it's hard to think of my baby being sedated, but I know it's for the best, it's for a good cause. They really don't think he has the cranio...they just want to be sure...but I'm afraid they'll tell me he does have it.

Meanwhile, we have to go back the next day to get casted for his helmet, in which he'll receive it on his birthday, the 17th. Pretty quick, as opposed to the month it took to get it from the military.

And the, of course, this story wouldn't be complete without the insurance denial from Regence Blueshield. We knew we'd get denied on the first time, of course. However, it was interesting, because I asked the nurse if they'd had any luck in the past with Regence. She said, "No, Regence has never paid." But I asked if anyone had ever gone through with appeals, and she said, "No, I think everyone has pretty much given up." Well, Regence is going to meet their match with me, because I've educated myself and I'm NOT going to give up, no matter how much crap they give me. If anyone can give me any tips on my first appeal, I'd greatly appreciate it. In my first letter to them that accompanied the letter of medical necessity, I mentioned that there are instances of possible TMJ and vision and hearing problems in children whose plagio is not corrected. They replied with the answer that 's letter had not indicated that he had or has any of these problems, so I need something to support that. I cannot find any articles on this. Do any of you know where I can find some?

Thanks so much.

Kellie and , 1 year Jan 17, 2002.

Tacoma, WA