H.S. For Sunday 081207

Plagiocephaly Revisited

Hey folks,

Back on May 20, 2006 I shared my story with you. It went like this.

I want to take a second to set aside politics, the news of the day, and the normal stuff I talk about. I want to share with you my story. Whatever you may think of me politically, or even personally, please hear what I’m about to tell you. You have NO idea how hard this is for me to share. How hard this has been, and continues to be, for me to go through. I know A LOT of it is simply pride and ego. I know that in the long run, it will work out.

My boy, Joshua, the love of my life, has always been a source of great pride. The fact he is so cute, advanced in his intellect (Documented), and just a source of joy that is undescribable, I walk around with him with my chest puffed out with pride. I love when we go somewhere, anywhere, and we are bombarded with strangers coming up to us and talking with us about how great he is. Then the medical condition became worse.

You see folks, Joshua was diagnosed with Torticollis which lead to Plagiocephaly. Because of this, he needs a helmet to be worn 23 hours a day for the next three to four months. As a proud and somewhat egotistical Father, I found and still find this hard to deal with. Now in the back of my mind, I, yes the one who couldn’t care less what people think about him on a normal bases, find myself upset and concerned what people are thinking when they see the helmet.

My pride was not the only problem. Our insurance company REFUSES to cover the cost of the helmet and treatments. They declare this to be cosmetic, therefore will have nothing to do with it. So myself and Laura are left to foot the bill. $250.00 every two weeks. The cost of the helmet? $2000.00. Along with any further and additional medical costs.

I’ll even admit to you, that I found myself guilty of this condition. I blamed myself and my wife for Joshua’s "Flat Head Syndrom". This all changed however, Friday 19th of May 2006, at 10:30am. My wife Laura found this web site. On this site, it talks about the fact that this is increasingly common, and a growing problem In the Leda Quirke piece, she said,

"Since the American Association of Pediatrics formally recommended in 1992 that babies sleep on their backs, the incidence of plagiocephaly has increased significantly. Records indicate that positional molding in back-sleeping babies is one in 10."

Myself and Laura are fortunate enough to find a way to come up with the added and unexpected cost of the helmet and $250.00 every two weeks. We are scraping by, but we will do it. But what about the single parents? What about those that live paycheck to pay check, penny to penny? That’s $500.00 a month folks. I know people that pay that in rent. Where do they get this money from? Their insurance will not cover it. So, do they do nothing? Do they watch their child grow and wait for the conversation that WILL come, "Mommy / Daddy, why did you not love me enough to fix my head when you could?" After a year, the only fix is surgery.

This is a cause that I will be taking on. This is a problem that needs to be dealt with. The insurance companies NEED to pay for this. I thank David A. and Pamela A. Schultz, along with Senator Larcenia J. Bullard (D) District 39, and Representative Edward B. "Ed" Bullard (D) District 118. I join with Mr. And Mrs. Schultz in their plea....You can read the whole thing with links included HERE.

So just a couple of days ago, I got this from a Mother of Three, Cherry, who said this.

Hey Peter, I have a 91/2 month old baby girl who is wearing the Doc Band right now. I have yet to submit some paper work for SSI, do you think she'd be eligible for it? I'm a single mom with 2 other older boys. She wasn't diagnosed by her physician even though I had asked him about her misaligned ears and misshapen head. As I was researching about how to correct her ears, I stumbled upon clues that she may have plagio and tort. I switched doctors and she's going through physical therapy right now. She's had the Band for 2 months now and may need a second one. I'd like to know if you think she's qualified for SSI...thank you for the heartfelt sharing of your story...

Cherry is EXACTLY who I was talking about. A single Mother of three, just trying to make ends meet. Do you think she is able to just throw an extra $500.00 a month into this NECESSARY process to help her Daughter?

I responded to her.

Welcome to the OPN.

I’m sorry I do not have an answer for that. I do not qualify for SSI. Myself and my Wife have pretty good jobs. I had, at the time, what I thought was great insurance. All I can do is share more of my story with you.

I’m 38 years old. I’ve lived my life, doing whatever it was I wanted to do. I have done some things in my life, both good and stupid. Law Enforcement, Hotel Management, Bouncer, Truck Driver, even Wrestled for fun. I have met ALL kinds of people, from all over the world. I would like to say that I have had a blessed life. I’m no millionaire. My name is not up there in lights. But I was happy. I’ve loved and lost. Married and divorced. Quit and got fired. You know, the normal stuff.

But then I met my Wife Laura. Soon after that, we had a Son. THAT changed EVERYTHING for me. I have always loved kids. I have worked with kids and even helped raise a couple of them. Kind of a Father figure without being the Father. I have been “Uncle Pete” longer than I can remember. Even talked about getting a T-Shirt made up that said so. But when I first laid eyes on Joshua? That day in the Hospital, my whole life changed. I went from being “Uncle Pete” to one of the proudest Papa’s you have ever met.

Now they told us at the hospital all about SIDS. They taught us the proper care and nutrition of our newborn Son. They told us about the proper use of the car seat. What they NEVER say word one about, is Plagiocephaly or Torticollis. We had no idea that these were even possibilities. They never told us about rotating the baby when he is sleeping. Never told us what could happen if we didn’t. Nothing.

When we began to realize he had a problem, we told him right to the Doctor. That is when we learned all about plagio and tort. You can see pictures of Joshua from day one all the way up to his last Birthday {Two years old now} and some with the two different helmets he had to wear at Joshua's Photo Bucket.

Now the battle began. The total cost of everything when it was said and done was somewhere in the neighborhood of $3000.00. Our “great insurance company? Nothing at all. They just kept saying this was cosmetic. Our Doctor, GREAT DOCTOR, kept arguing with them that this was MEDICAL.

You see, because he had Tort, he always favored the one side. Therefore, even if we were to move him all night long, the chance of him getting Plagio was great. So we battled and battled and in the long run, I will admit, we just paid for it to get it fixed sooner than later. Time IS of the essence.

So then I found Mr. and Mrs. Schultz. I learned about Amanda’s Law, which died in both the House and Senate. I learned that this is more of a common condition than we though. The battle wages on. Like I said, “Myself and Laura are fortunate enough to find a way to come up with the added and unexpected cost of the helmet and $250.00 every two weeks. We are scraping by, but we will do it. But what about the single parents? What about those that live paycheck to pay check, penny to penny? That’s $500.00 a month folks. I know people that pay that in rent. Where do they get this money from? Their insurance will not cover it. So, do they do nothing?”

You are exactly the type of person I was talking about. This is the reason that this needs to be revisited in Congress. The only problem is, with this do nothing congress, all they care about is “getting Bush.” they do not even seem to want to hear about anything else so I have backed off for now. It’s pointless.

You said that you have two older boys. An interesting point would be this. They do not have Plagio. Your Daughter does. She has also been diagnosed with Tort. That has to be, at least somewhat, of a link between these two.

I wish you nothing but the best. I know, if you do what the Doctor says, it should work out. This is NOT your fault. This IS a medical condition. Joshua is doing just fine now. If he chooses in the future to have a military haircut, you may be able to notice a bit of it, not too much. It is A LOT better than it was, and it is money well spent.

I would try SSI. The worse they can do is say no. We heard that a lot. It is hard to go through. No doubt about it. But now, Joshua is fine, and I’m back to being a proud Papa.

Please feel free to contact me at ANYTIME. You can email me, opntalk@netscape.net I will discuss any part of this, give you encouragement, help in anyway I can, or even just say hi.

On a lighter note, stop by the OPN anytime, you never know what you will see here. {Smile}

Best wishes, and you are in my heart and prayers. I know what this is like. Talk to you soon my friend. Like I said before, this is NOT your fault.
Peter

This began a process in my head. I started to revisit the feelings, emotions, and the thought process, as back when I was going through this whole mess the first time. I wasn’t sure if I had helped Cherry or not. I just knew I understood EXACTLY what she was going through.

That night I came in to check the news and comments, and I saw that Cherry had responded back. The following is her, and my conversation to each other.

Peter, thank you so much for the encouraging words you gave me.

No problem. I will help in anyway I can. I know when we were going through this, no one was out there to give us encouragement. Oh, of course friends and family, but the Insurance company wanted nothing to do with it, or us.

How old was your baby boy when he got diagnosed with plagio and tort?

Six months old. The first picture you see is with the corrective gear is a Star Strap. The one with the moon and stars. He out grew that one pretty quick and ended up with the helmet. He also had a reaction to the Styrofoam used for the lining.

And how long did it take for him to wear the bands?

I believe he was somewhere around 15 months when it came off totally. MAJOR improvement. Like I said, if he shaves his head, you will notice it a bit, but nothing even in comparison to the way it was before. His eyes and hearing is great. That was one of our most major of concerns.

You are lucky to have an excellent doctor. We weren't that lucky. My baby girl's ear was noticeable since I first held her at the hospital. Her left ear didn't have a curve, it floppy and sticking out much further than the other. I brought this to her doctor's attention but all he told me was she will grow out of it. So after getting that advice, which I believed, I just started to tuck her ear under her baby cap and even tried to tape it but taking it off was painful because she has a lot of hair so I didn't do that afterwards.

It’s easy to believe. When a Doctor tells you something, you figure, since he is the Doctor, he must know what he is talking about. It also sounds logical. This tiny little head is like putty and is simply going to grow out. Kind of like a balloon. Truth is, the head STOPS growing VERY early in life. There is only a very minute window where corrections can be made without major surgery. Once the head solidifies, or becomes fully formed, it will grow a little lager, but the form or shape is pretty much there.

Then my baby's dad, (whom I'm not with anymore)and I, noticed that she only likes to point and lean her head towards the left so her ear was getting more forward. And her dad actually was the one who noticed the flatness on her head and brought to my attention when she was two months old or something. I asked her doctor about it and again he said she'll grow out of it and even suggested for me to put a small pillow under her. I nodded but I wasn't about to put my baby girl's life in danger of suffocation. The things he suggested were really odd. He also suggested for me to wash her head with Selsun Blue to remove the baby dandruff. I didn't do that risky thing either.

You should tell any and everyone you can about this Doctor. This seems to me to be EXTREMELY bad advice to say the least. I am so VERY glad you didn’t listen to him. This guy does not sound like he should still be practicing.

My baby's head cleared up a week later because I started to wash off the baby shampoo really well from her head (I was too scared to touch her soft spot before that's why I was only gently rinsing her head.}

I know the feeling. {Laughing} I was totally convinced that I was going to “break him” if I was not overly careful. You get use to it though. I understand that YES, you need to be careful of the soft spot, but not overly so. Well, I get that now. {Smile}

How come the doctor had to suggest a harsh shampoo for her head? I didn't understand that.

He sounds like an idiot.

Then she had a cold or cough or something like that and he prescribed and otc medicine but I've read and also asked 2 pharmacists about babies those young taking otc meds, and they all said they don't suggest giving babies those, articles and pharmacists said those.

You are not still seeing this Doctor are you? I’m serious about this. From what you are telling me, this guy needs to loose his license, or at least be barred from Pediatrics.

Anyway, I used to work overnight as an auditor for a big hotel chain so after I'm finished with all my paperwork, I would just browse online and I wanted to find something about babies with ear problems. I found something called Ear Buddies which was developed and only sold in England anyone can order them and I was happy...I was worried what the other people would think with those ear splinters but I knew my baby would need it.

I talked about this a few times when it was happening to me. Really, to Joshua. I use to HATE when people would come up to me and ask stupid questions. “Oh, is he handicapped?” “What happened? Did he fall?” “Oh, my so and so had the same problem. They got seizures too.” Seriously, I cannot tell you how this was a learning experience in the control of my temper.

My Niece actually helped me out a lot. She was afraid I would end up in jail, so she said to me. “You know Uncle Pete, they really do not mean any harm. Nothing gets to people’s emotions more than a baby in need.” She also said the same thing you just did. “You know, it really is all about Joshua.”

Believe me when I tell you, she is my Angel. She was only 14 at the time.

So after nights of researching about ear splinters, for some reason I stumbled upon a an article which led me to start researching some other worse problems my baby girl may have. After 5 appointments with her doctor, and no diagnosis of any of my findings, I started to look for a different one. Five months passed without knowing my baby have these problems. The second doctor was supposed to be good but I also had problems with her. She's too busy shadowing or teaching her medical students medical terminology and she just don't seem to concentrate or show any compassion about my baby's condition. I was the one who told her that my baby has plagio and tort, I didn't waste any time for her to guess what my baby's problems are. So we got referred to different specialist but all her referrals were snots. The neurologist she referred me to didn't have an availability until my daughter is past a year old. So did the neurosurgeon. I have medicaid and I believe that it's the reason why they wouldn't see my daughter, I mean can you really believe a neurologist can't squeeze in a 5month old to be evaluated? At that young age, that's an urgent thing.

OK, I’m NOT, I repeat, I am NOT a medical Doctor. So what I’m about to say to you is friendly advice between friends. I do not practice medicine and in no way is what I am about to suggest to you to be taken by you, or anyone else out there reading this, as medical advice.

Try this. Pick a new Pediatrician. Briefly advise them that you believe that your baby has Plagio and Tort. Ask them if they will refer you to a Prosthetic Company. We used Hanger. Look them up, see if they are in your area. I believe they are nation wide. They are great people. They are the ones that made, monitored, and remade Joshua’s Helmet. We NEVER saw a Neurologist. It was not needed. If you have already done that, then I’m saying this for the benifit of anyone else out there reading this.

I have depression for years now, have been on antidepressant for years, then got the severe post partum depression and got much worse when all these problems with my daughter start popping up. I have to take her to physical therapy every week. Single mom of 3 who's suffering a mental breakdown.

You know Cherry, I want you to realize something that is REALLY important to remember. Once you bring a child into your life, it’s all about them. I can have the worse day ever. I can be sick. I can be angry. When I get home, Joshua runs over and says “Up!” When I give him a hug, I smell him. Yup, I said it. I actually take a deep breath in and smell him. Baby’s have a very unique smell.

Also, right there, in my arms is the essence of innocents. Pure as the wind driven snow. All he cares about is I was not there, now I am. When I hung my boy, the cares and the problems melt away. NOTHING is more important to me than my Son. NOTHING.

So the next time, I do not care what, why, how, who, or anything else, the next time you start feeling depressed, sad, lonely, hurt, mad, or ANY negative feelings whatsoever, pick up your baby, and smell her. Trust me on this.

I don't want anyone to feel sorry for me because my kids are my responsibilities and my life and I love them very much. They're the reason why I haven't given up in life. I refuse for them to have no mother.

Remember this also Cherry, it is possible for them to not have a Mother, even when you are there. If you are so focused on your problems and the way you feel, sometimes you can forget that right there in front of you is someone that needs you. Someone that loves you unconditionally. Someone that couldn’t care less about the phone bill, bad days at work, where the money is coming from for the next trip to the grocery store. Nothing. All they know is they love and depend on you for EVERYTHING. Mommy is there to comfort, guide, fix, and love. As long as Mommy is there, all is right with the world.

So right now, my daughter is on her 2nd month of wearing the Doc band. Did you also get a Doc Band for your baby? His helmet actually looks different from what they have now. Did it just recently change?

The first one is a Star Band the second they just called a helmet. I’m not sure if they just recently changed or not to tell you the truth. But just wait until she is done with the process. When you hear, that’s it. She no longer needs it. When you see the difference it made. THAT will be a good day. I know this may sound simplistic, or seemingly needing not to be said, but it really DOES take time. Do not keep checking every night for improvements. You will drive yourself nuts. Also remember there is no such thing as a perfect head. EVERY head has imperfections.

Thank you for your time, Peter.

No thanks needed. It is MY pleasure to talk to you. As a matter of fact, you may have re-lit the fire in my heart to attempt to get Amanda’s Law revisited. I have been formulating letters in my head to different Senators and Congressmen. With all this talk about American Healthcare, maybe they will be willing to look at this again. I still doubt it. I still believe all they really care about is “Getting Bush.” But hey, this would be a GREAT way to prove me wrong.

I will attach a pic of my daughter and her band. I have no decorations on it right now. It's just plain white but I may color it pink soon. Have a great weekend.

I would LOVE to see it. You have a great weekend as well. Talk to you soon.
Peter

That is Exactly what she did. She re-lit the fire in me to get something done about this. I will be contacting Congress, when they get back from Vacation and see if we can get Amanda’s law re-visited. Someone like Cherry, or Me for that matter, NO ONE should have to go through this. This is a growing medical condition. 1 in 10? Come on. This is a serious situation that needs to be addressed.
Peter

Sources:
OPNTALK -Plagiocephaly
Plagiocephaly.org
Torticollis