Well the past few months I have been dealing with Caysen being diagnosed with Left toricollis, placiocephaly and asymetrical braciocephaly. Or should I say not being diagnosed. Basically what has happened was when Caysen was born he had what looked to be a flat spot on the back of his head. At every doctor appointment we would bring his head shape up to the doctor and she would say it is fine, and it will fill out and be more "normal". Well it hadn't gotten that much better, and my babysitter had taken the twins to a mom's playdate where a mother there asked if he had torticollis. The reason she asked this was because of his flat spot on his head. She also said that her daughter had to wear a helmet. This is where it dawned on me that I should ask about the helmet thing to my Moms of Multiple Group. Seems like a weird connection but with the email group I have with them I had seen several emails about helmets, etc, but never bothered to read them because I had never heard of torticollis, plagiocephaly, or braciocephaly. Well when asking the TMOM's they had informed me that you do not get a helmet for torticollis but for plagiocephaly and braciocephaly. They recommended that I do a free screening at our local hospital. So I arranged for a screening-keep in mind still with my pediatrician saying he was fine. At that point in time Caysen was diagnosed with Left torticollis with what they believed as plagiocephaly and bossing. Becuase it was a physical therapist she couldn't technically diagnos plagiocephaly or bossing, but recmmeneded that I go to STAR Cranial center in Dallas, TX who also have a free evaluation. So within the next two weeks I had scheduled a free evaluation from STAR Cranial the only down fall-we had to drive to Dallas. Not a real far drive, 4 hrs, but far enough that a down and back in one day wears you out. Since the kids were spending a week with my parents I scheduled it so that they would go with me down to Dallas. So we made a two day trip out of it and it was nice. The twins got to see my grandparents for the first time along with my Aunt Ang and my cousins.
During this time I spoke with my insurance and found out that they do not cover orthosis that change the shape of the body. Meaning the helmet would not be covered. Once talking with insurance though, they did suggest that I still go through the process of getting preauthurization for the helmet. I was dreading the whole process because I went through a similar process roughly two years ago, when trying to see if they would cover any infertility treatments. It didn't turn out good, but what was a positive was that during the process we figured out that if we switched to Craig's insurance it would be completely covered, perfect timing.
Well of course we couldn't do anything like that with Caysen's helmet and wait till the first of the year to switch back to my insurance because time was money-literally. The older he got the longer he would have to wear the helmet and the longer he wears the helmet the greater the chance he has of having to wear more then one helmet. To give you an idea, one helmet cost roughly 2500.00 so two of those would run 5k. Althouh IF my insurance would cover we still have an out of pocket maximum of 3500. Well although insurance now doesn't cover we are only paying 2500. So in the long run we are saving 1k.
So after our evaluation at STAR Cranial I was secretly hoping they would tell us, "oh although he has a little bit of a flat spot his head is still in normal range and just seems a little more obvious now because he doesn't have much hair.
Well...... we were wrong. He actually was diagnosed with moderate plagiocephaly, mild asymmetrical braciocephaly, with right front bossing and ear misalignment. -I have to say I was shocked, I didn't know all those things were wrong, but what was promising was that he did tell us that we were catching it in time and that we would probably only need one helmet.
Fast forward a month and after gathering all the diagrams, letters of medical necessity, research, etc. (I had roughly 15 pages) of documentation I sent to insurance to try and plead my case that they should cover the helmet, we were denied. I have to say I was a little hurt, but also knew that you get to chances to appeal and I appealed once but I wasnt going to appeal a second time because if I did and insurance denied again, then they would not even consider the claims STAR cranial would be submitting. I know that probably seems weird but with STAR Cranial they have said that after submitting medical codes, etc sometimes insurance will cover. So I have opted not to try and submit the same documentation again for a second appeal. That is why it took me so long to do the first one because I made sure I got all the information I possibly could before submitting, so that if it was denied I would know I did everything I could.
Plus on a positive note, because we have spent so much money on medical this year, we will be able to file some of it against our insurance. I am not a tax expert but basically if you spend more then 7.5% of your annual income on medical , thats perscriptions, bills, travel expenses, etc you can file it against your insurance. So I am trying to look on the bright side.
Anyway I gave you all the boring information to say this. Last Thursday Caysen got his helmet! I at first was really scared because as a money you wont to protect your kids, and to find out he had to get a helmet for his head, just made me feel like I did something to cause it. Although EVERYONE has said there was nothing I could have done, especially with having twins the size I did, but its still tough, and you want to protect them and take blame for everything, and especially since I was on bedrest and couldn't go down with him to watch him get the helmet put on I figured I would cry like a baby. And I have to say when Craig sent me a picture at the Dr. office I cried like a little baby for a couple hours. But once he got home and I saw him in it, and that it didn't bother him and he looked rather cute, I felt better. You are probably wondering how long will he have to wear it.. He has to wear it every day for roughly 23 out of 24 hours of the day. He gets to take it off for roughly an hour during bath time so I can clean it daily. And hopefully at his next appt on the 13th we will find out roughly how long he will have to wear it. My goal is that he will get it off by the first of the year if not sooner.
Ok so here are a few pictures of him in his helmet. And I have to say the helmet couldnt have come at a better time. He is just now starting to climb like a monkey on and off everything so he is hitting his head a lot on stuff, and now with the helmet it doesn't phase him. Its kind of nice.
Its a little blurry b/c its from Craig's cell phone, but this is after its fitted and still at the doctor office.
Caysen enjoying his helmet and a snack.
I am so glad you updated us on this! What a process. You are a GREAT mom! And Caysed looks SO SO cute in the helmet.
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