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George's update (physical therapy/head shape/etc.)

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February 28th, 2013, 08:50 AM
KMH KMH is offline
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George had another appointment this week, so here's the update and a question about a big decision we have to make.

Quick background...George was squished in the uterus and his head has been a little lopsided since birth. He also had a little bit of torticollis...the muscles on one side of his neck were stronger than the other side. We have been doing exercises at home to help, and he has made great progress on the strength. We have 3 more appointments with the physical therapist to work with him and get those muscles as strong as possible. This will help with all his motor skills and also help to even out the shape of his head.

In 6 weeks when PT is over, we have to make a decision about his head shape. He looks totally fine from the front and one side, but from the other side you can tell his head is flattened on that side. We can see a specialist that will fit him for a helmet that will reshape his head and help it be more symmetrical; he would wear the helmet for 6-12 weeks. This will mean weekly appointments an hour away, and will cost $1500-$4000 depending on which specialist we choose and how long he needs to wear the helmet. Insurance will not cover the cost.

George's head shape doesn't cause any issues with brain development...the benefits of reshaping are purely cosmetic.

I feel totally unprepared to make a decision like this! On one hand I want him to be comfortable with his physical appearance and don't want him to be "the kid with the funny-shaped head," but I don't even know how much you'll be able to tell once he has hair. On the other hand, I don't want to "fix" something unnecessarily. Heaven knows I'm not perfect, and neither is DH...our imperfections make us unique. I don't want to send the wrong message to our kids by "fixing" them because they are not physically perfect. Heck, now I'm probably overthinking

Has anyone been through this with their kids? Any advice? I am terrified of making the wrong decision...this is something he'll have to live with forever.

(Sorry so long...thanks for listening )

Melissa & DH
IVF babies Claire (5), Abigail (3) and George (3)

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February 28th, 2013, 08:58 AM
mandattu_02's Avatar Mom to 2 beautiful babies
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Location: Lubbock, TX
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Awe, I'm glad he is doing so well with therapy!!

We have a little bit of the flat head issue going on here as well, only on the back and not the sides. Our pedi gave us the option of a helmet to help round her little head out or to just flip her more side to side, lots more tummy time (even tummy sleeping) and sitting up more to get the pressure off her head and just let it round out on its own over time. She has a lot of hair so it hides it pretty well, but if you run your hand over the back of her head, you can definitely feel a pretty good flat spot. We have chosen to forgoe the helmet for now and just do more tummy time and sitting & flipping to let it round out on its own. We did this with Ryan and it worked pretty well and once his hair got nice & thick, you can't see it at all.

Its such a tough decision, but I totally get where you are coming from. *HUGS*

**Thank you Jaidynsmum for my beautiful siggy!**

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February 28th, 2013, 09:11 AM
KMH KMH is offline
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Thanks, Amanda, I really appreciate your response!

Melissa & DH
IVF babies Claire (5), Abigail (3) and George (3)

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February 28th, 2013, 09:18 AM
cincy1luv's Avatar 1st time mommy
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I know nothing about this but what you have said and Amanda it sounds like the hair growing in and keep up with what you are doing and watching him you wont be able to tell!!

You will make the right choice I am sure!!! Wish I could be more help!! But hugs!!
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February 28th, 2013, 09:25 AM
Belita's Avatar Platinum Supermommy
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That's a tough one. I'd try the increased tummy time and all of that first, although I know it must be so hard for you with the twins and Claire. For a boy, I'd be a little more concerned about the head shape's cosmetics because a lot of the popular hair styles for men are very short, and then in case he goes bald.

At Gymboree a couple of weeks ago there was a baby girl there Sean's age and her head was so flattened on one side that even with thick, black hair that was about 2" long there was an obvious flat spot. I'd definitely do the helmet in that case!

I think, with a boy, what it'd come down to for me is whether the flat spot is noticeable without looking for it or if you only see it if you know it's there.
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February 28th, 2013, 10:59 AM
bryan and nina's Avatar Love being a mommy!
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Oh wow, that's a really tough call!!! I agree that my decision would depend in the severity. If its not super noticable to strangers, it will be even less noticable once he grows hair. That's a lot of money and I also agree with your point of "fixing" them for purely cosmetic reasons. Yet, you don't want them to be teased later! My voice would be no helmet but there are definitely pros and cons either way. Let us know how you decide!
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February 28th, 2013, 12:32 PM
Mega Super Mommy
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I went through this exact thing with Riley. He squished himself head down in-utero from 20 weeks on and didn't move. At my anatomy scan they couldn't even get any good pictures of his face because of his position. He had moderate-severe torticollis and moderate plagiocephaly. We went to PT for months and months for his neck and eventually were referred to a specialist for his plagiocephaly as well.
We agonized over the helmet decision, but in the end we did it. We don't regret it one bit. Riley's ears were uneven and his head was noticeably misshapen. I thought about things like...what if he someday needs glasses? Will they fit funny because his ears are uneven? Will baseball caps fit funny? Will he be self-conscious about it? Will he be teased? Will he be able to have a buzz cut without being worried people will notice his head shape? This isn't something that can be fixed later on in life. There is a window where the helmet will do the most good and then that window shuts.
Riley wore his helmet for 3-4 months, 24 hours a day with 30 minute breaks every few hours. It really was no big deal. He didn't mind wearing it, and you'd be surprised the number of people who would stop us and say, "Oh! My niece/nephew/grandkid/neighbor/friend's baby had one of those!" We decorated Riley's helmet with cool stickers. His head eventually stopped changing and he still has what is considered mild plagiocephaly, but it isn't noticeable except to maybe his doctor.
In the end, Riley did require surgery at 13 months to correct his torticollis. The PT wasn't working, and the surgeon said the muscle fibers were hard and fibrotic. PT would never have been able to fix it.
As far as the cost, our insurance did cover the PT for his neck and his helmet, but only because his plagiocephaly fell within a certain range of severity. However, because of our deductible at the time we basically paid for it out of pocket. Like I said though, no regrets. Feel free to ask me questions if you have any.
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Last edited by Tiffany8620; February 28th, 2013 at 12:36 PM.
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February 28th, 2013, 12:57 PM
KMH KMH is offline
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Thank you so much...I really appreciate everyone that has taken the time to read and respond.

BabyLover, thank you for your thoughts. The Physical Therapist did mention that it might be slightly more difficult to fit football/baseball/bicycle helmets, and that's the only reason DH is even slightly concerned (men!). She also measured to see if his ears are even (they are). I didn't really know why that was important while she was doing it, but that makes sense if he needs glasses someday.

Lots to think about for sure!

Melissa & DH
IVF babies Claire (5), Abigail (3) and George (3)

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February 28th, 2013, 01:00 PM
doremi's Avatar Team Blue Mama of Two
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Hmmm... I'd be inclined to lean towards getting a helmet if he had been squished in utero. If it was just flatness caused after birth, prior to being able to sit up unassisted, etc, I'd be more likely to wait it out. That's a tough call!
Mommy to two beautiful boys, watched over by two angels in heaven

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February 28th, 2013, 03:13 PM
Mega Super Mommy
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Tough decision! No real advice, just hugs!
| Jessica | Wisconsin | Happily married since 8/22/08 |

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February 28th, 2013, 09:31 PM
michellelove0502's Avatar Mega Super Mommy
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I would definitely get the helmet for the same reasons the other ladies said.

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March 1st, 2013, 03:35 AM
yashobo's Avatar Mega Super Mommy
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Tough decision. Big hugs and best of luck deciding.

Sisters, friends forever
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March 1st, 2013, 05:56 AM
JillMama's Avatar Mega Super Mommy
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I don't have any real advice but what ever decision you make will be the right I e for your family. Go with your gut. HUGS!

Jett 10/11/12 7lb 14.5oz 20.5in long
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March 2nd, 2013, 08:13 AM
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Hey there. I haven't been on in awhile but I saw your post and definitely wanted to chime in. Catherine actually HAS a helmet. She got it about 3 weeks ago. For her first 2 months in NICU, they did a good job of flipping her around and letting her sleep on her sides and stomach even (they are on monitors so its ok). But when she got to the progressive care nursery for her last month in the hospital they had her on her back the entire time because it is "preparation for going home". Well that's nice and all but she developed a flat spot on the right side of her head because everyone would walk up to her bed from the right and she would look that way and stay there. The occupational therapist in the hospital even said that they should turn her bed different ways and we asked but they didn't and you can't be there 24 hours a day. SOOO, she came home with a flat spot. Her pediatrician noted it at the first visit the day after discharge and we were DILIGENT in having her sleep on the other side but it didn't help. Her head was growing but all over and the spot didn't fill in. So now we have a helmet and she also has a bit of torticollis we are working on through stretching. They said that it wasn't just a cosmetic issue, that the flat spot made her right ear more forward than the left and that put her at risk for TMJ if it didn't correct itself. Her helmet was covered by insurance but we went with an out of network provider because they give much more personalized attention and they actually did a mold of her head so it fits PERFECTLY. She does not mind it at all. Even after one week I could tell the flat spot was less pronounced.

We went ahead and did this no question because I am a FIXER and if there is a way to fix something so we don't have to worry about it anymore I am IN. I felt we had done the best we could on positioning her for 3 months plus post hospital and it didn't help. I didn't want her to complain as a teenager that her head was flat and be self conscious.

I would upload a picture of her in her helmet but I can't figure out how to add pictures because it asks for a URL? Why can't I pull the pictures off my hard drive like you do for facebook and email? Can someone tell me how to do this?

I hope this helps!
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