Tuesday, May 26, 2015

10 Things I have Learned About Being a Plagiocephaly Mom

Oh my little Emily! She definitely has had an interesting first year of life. If you read my blog often, you will know that she was diagnosed with plagiocephaly and torticollis back in December. Torticollis is the stiffening of the neck, where plagiocephaly is the flat spot on the back of the head which typically goes with it. We were referred out to the awesome Cranial Technologies in Annandale, VA. And believe me it was a learning curve for both of us. Emily had to get used to a helmet and well, I had to get used to a helmet also. I have been thinking about this post for quite some time. I frequent the support boards and often see a lot of questions that I also asked. I didn't find the board until we had less then a month left, but I try to answer questions fairly often on it. So I came up with 10 things I have learned about being a plagiocephaly mom!

She didn't like it at first!

1. Don't worry if you can't say plagiocephaly.

Plagiocephaly- So plagiocephaly means "oblique head". Plagio is greek for "oblique" and "cephale" means head. You deserve an award if you can say it correctly. I have heard it used by the doctors and clinicians numerous times and have yet to be able to say it correctly! And honestly it doesn't really matter because when you tell people what your child has, they are still going to say "what's that?"

2. Get evaluated, even if you are scared.

We noticed Emily's head shape in November. She was most likely born that way, but they said that she probably had a growth spurt that made it more obvious. When the doctor looked at it, she told me that she felt it needed to evaluated and that it may be pushing down one of Emily's ears which could cause asymmetry to the face. I honestly didn't want to get evaluated because I def did not want her to have a helmet or to know that there was a problem. Just go and get it done. I asked Cranial Technologies if they ever tell people that their kid doesn't need it and was told from time to time, but typically patients are already screened by the doctors before coming in. Also there is a short window and the sooner it is caught, the faster and better the change is. Just go!

3. It's a big expense, but it is worth every penny.

The band cost $3800, but since we were in-network we were able to get it down to $2500. From there the insurance gave me $700. This left us coming out of pocket $1800. It was a big burden for us. We don't have a savings account and although we live comfortably, we didn't have the extra money to pay for it. I was able to use my Care Credit card which allows me to have interest free for the first year. I also contacted my insurance and have been in process of appealing for more money towards this. I already had a complete summary of Emily's evaluation and a letter from her pediatrician on file for them to cover anything, and I then wrote them a 2 page letter asking for further assistance. It was spendy and not something that we wanted to use money on, but it was so worth it in the end. Also make sure you contact your insurance and see what other options there are for you. Fingers crossed for June 4th!

4. It's scary, but you will get used to it.

I remember sitting in Cranial Technologies waiting room on the day she got her helmet completely sick to my stomach about it. I saw another Mom checking out and was able to ask her some questions. One of my biggest questions was "how do you get used to taking your child out with it". Her response was alot like my experience. Honestly it is hard to take them out and get the different looks, but you do get used to it. She told me that she had a hard time, but she figured that she couldn't hide in the house for 16 weeks. This was very true.

5. People will stare and ask lots of questions.

People can come off so rude. I had my first question probably 50 steps out of the office while waiting for the elevator. "What's that thing on IT'S head?" I have gotten a lot of interesting questions and also lots of stares. Usually when I caught someone staring they would quickly add "look at those eyes" or "wow look how alert she is". Hello big elephant in the room! Just try not to let it bother you. Many people will ask you why they have it on and then go on to tell you a story of some distant relative. Just smile and try not to let it bother you. I don't think that there was a time at gymnastics where I didn't hear a kid ask their parent. And although I still got slightly embarrassed, I just said "it's to help make her head nice and round". And typically it ended there. I heard a little girl at gymnastics say "LOOK DADDY THAT BABY HAS A HELMET ON" and his response was "And?" and that was the end of that conversation she quickly went on to something else. Just let it roll!

6. Don't worry about siblings, it's not as bad as we think.

I was so concerned about what Hailey was going to think and if she would be embarrassed by her baby sister. To my surprise, she wasn't at all! In fact, she was super protective of her. She did not like people starring at Emily and even more she didn't like people asking about it. We were in the grocery store and a little girl asked "what's that thing on that baby's head" and Hailey was so upset and loudly said "that is so rude". I seriously thought I was going to have to hold my 7 year old back from fighting this maybe 4 year old. I explained that it was innocent and she wasn't being mean, but curious. She still wasn't happy. She also was always sure to tell Emily how cute she looked. She told me that even though she didn't want Emily to have to wear it, she wanted Emily to know that she was still very cute with it on!

7. Pay attention! You are the parent so you know what is best.

One of the biggest challenges is making sure those little hot headed babies do not over heat! I often times got questions like "where is that baby's socks?!" or "why is she not in long sleeves?!". It was so easy for Emily to over heat and people don't typically know that babies usually let most of their heat out from their heads. With the helmet trapping it in, she would get hot fast! This makes them get sweaty and they also can develop heat rash in the band from the extra moisture. Neither of these are good! So honestly less is best. Their little feet may be cold, but as long as their stomach is warm to touch, then they are fine. And don't let anyone make you feel bad for not having proper clothes on. You know what's best and what works for your child.

8. If you see a red spot, then make sure it is completely gone before putting it back on.

I made that mistake once and it set us back an entire week. We were told in the first 72 hours while doing the skin checks throughout the day, to make sure to look for red spots. Well Emily had one and I waited the hour and it was going away, but not quite gone. I knew it was important to get the band back on and how much they stressed about the importance getting her to the 23 hour stage. So I figured it was going away and I put it back on. This started her 23 hours and the next night I was horrified when I saw what it looked like. It had created friction burns on her face. The band was off until it healed and I ended up having to take her back up the road to the office 3 times before it could go back on. So those red spots are no joke. If you see one, then it's better to leave it off, even if you have to sleep them without the band, then to put it back on.

9. Listen to the experts- other mom's who have been there and have advice.

I was lucky that I was able to message with another mom who had been through the same thing with her son. She told me to use a little powder on Emily's forehead (even though the doctors said that was not allowed because it was not approved by the FDA with the band) and it helped alot with the red spots. Also she told me to stock up on alcohol since I would need to be cleaning it so often. She told me what she would do for her son and where she would get it for the best deal. I am glad I listened to her and she was the first on I messaged when Emily had the friction burns asking if it was normal. I am glad I had her advice. I also see a lot of good advice on the boards. Seek a friend or a group with parents who have done this. They can help you out a lot more than the clinicians are willing to say.

10. This isn't your fault.

I spent a good amount of time feeling bad about Emily's head. Although they said it was most likely the ways she formed in the womb, I still felt bad! And sometimes little comments people would make would add a little more sting to my thoughts. "So did you leave her in the crib to long?" or "Would it have been better if you held her more". Just let those roll off your back. This isn't your fault and honestly compared to so many more scary things out there, this is just a temporary thing. It will be okay, but please don't blame yourself.

I hope that these are helpful tips for someone. It's scary when you start out, but it flies by and will be over so fast. And believe me, the changes were amazing and it will be worth it in the end!

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