Plagiocephaly

kmonroe2

My 8 month old has been diagnosed with torticollis and mild plagiocephaly. My pediatrician referred us to a craniofacial specialist for head scan and evaluation. According to his measurements (by the head scan), he is not medically required to wear a helmet. However, she said if his head shape is something that concerns us, that we should go ahead with the helmet. Anyone else have a baby with plagiocephaly?

hmontty

My LO has a slight flatness on the back of his head, but his neck is fine -- he just prefers to sleep looking up.

No one has even mentioned the need for a further evaluation...yet. Although I don't believe the flat spot is getting worse, and now that he is sitting up, sleeping on his side a lot, etc., I think we will just let it go and let time smooth things over.

His ears are also slightly uneven, but it's only noticeable from the top. They look normal looking straight on at his face.

jo4janet

My DD1 had torticollis and plagiocephaly. It was moderate to severe because she had misalignment of her ears and eyes. We put her in a helmet at 8 months because the neurologist recommended stretching exercises/PT and to see if it would improve/correct. She was two months when I noticed it. To one of the responders, the doctors won't necessarily say anything about the plagio because although they look at the head, they don't really look for plagio. They are looking more at the head circumference and don't always notice shape. To the OP, the helmet is very expensive, but if it is something that concerns you, definitely get the helmet. I was concerned because although there is no absolute research, I personally feel that a baby/child is at risk of having perceptual problems from a misshapen head if there is misalignment of the eyes. Good luck either way.

kmonroe2

I'm very conflicted. He has no misalignment with his eyes or ears. Only a flat spot on the left side of his head. The helmet will cost us $3000 out of pocket and weekly trips for a head scan & helmet adjustment. I don't want to do it unnecessarily. I also don't want to regret not doing it down the road. I was hoping it would even out as he continues to grow.

jo4janet

There is a plagiocephaly group on yahoo. You might be able to get more opinions regarding whether or not ppl banded that had a baby with mild plagiocephaly. I don't think plagiocephaly will really correct on its own, though, to be honest with you, but that is my personal opinion. They can tell you what their experiences were, as well. It is a really hard decision to make. Why don't you also XP this post to the special needs board and you might get more responses?

nuttycoconut

My twins have plagio and the helmets (Doc Bands). We paid $5000 for both but didn't want to have any regrets about not doing it because you can never go back and fix it later on. After 1 week their heads looked SO much better. They have had them for 2 weeks and have adjusted very well. It's awesome to go to the weekly appointments and see the progress. I have no regrets whatsoever. 

The babies had no problems with sleeping and they were used to it after a few hours. In fact, it has helped them save their heads from some big bumps since they are becoming more mobile now. 

I was worried about how strangers would perceive them in helmets in public but we painted them fun colors and got some decals that say "tinkering with a flat" and "rounding out my game". Many people still comment that they are cute, and some people even say that their baby had a helmet too!

Because we got them at 6 months (5 months adjusted age) they will only be in them for 8 weeks. As my pedi says, it's only a "blip on the time scale." The longer you wait the longer they are in them. Good luck with your decision!

Ireland05

Our guy saw the plastic surgeon about a month ago and was diagnosed with moderate plagio.  He doesn't have torticollis, but his flat spot is still on one side.  The doc said to keep him off his back as much as we can, but he doesn't spend much time on his back as it is, so I'm not sure how much it will help.  We are due to go back in another month to see where things are.  I'm sort of leaning toward the helmet though it will be a lot OOP, but DH is sort of leaning away.  We'll see what things look like in a month.  Tough decision, but PP is right that it's really a blip on the time scale, and unfortunately you can't fix it when they are older.  It is purely cosmetic though. 

st.augbride

We had a doc band for ds from 6.5 months to 8 months old when he outgrew it. They recommended a second too, but at that point he was off his back a lot on his own and his head shape looked much better. It still isn't perfect at 2.5 yrs but nobody would notice except me. His was moderate to severe and he had bad torticollis that was neurological and not muscular in nature, so I knew it would take a while for it to resolve if left alone and probably wouldn't completely. For most kids, it does resolve. We have friends whose daughter had pretty severe plagio, and now she is 13 months and it is much better. You can still see some flatness if you look, but it doesn't stand out unless you really focus on it. I'm sure it will keep getting better. The helmet appts and cost blow. If ds didn't have torticollis and lower muscle tone keeping him on his back longer, I would not have felt like we needed to pursue it as much.

hmontty

jo4janet said:

To one of the responders, the doctors won't necessarily say anything about the plagio because although they look at the head, they don't really look for plagio. They are looking more at the head circumference and don't always notice shape.

To clarify: the doctor did say something about the flat spot, she just didn't see a need for a further eval. She had me try repositioning and some other things so that it would not get worse -- and it hasn't.

hmontty

jo4janet said:

I don't think plagiocephaly will really correct on its own, though, to be honest with you, but that is my personal opinion.

My friend's son had a seriously misshapen head -- so badly that they suspected he had hydrocephalus. Thankfully he tested negative for that, but his head was enormous (making his face look tiny with an enormous cranium) and totally bumpy and bulgy in all the wrong places. He looked seriously bad.

This child never got a helmet -- the neurologist thought he would get better on his own. He did need to get PT for torticullis, but never a helmet.

Over time, his head got better and better. Now he is 26 months and looks completely normal -- in fact, he is extremely handsome. The shape of his head evened out, his face caught up with his head, and with a full head of hair, any little abnormalities that might be left are totally unnoticeable.

This is just one story out of many, of course...

plusoneblog

My baby has slight flatness on the back of her head. It has improved a little over the last 3-4 months. As their head grows bigger it can improve. For me it would depend on how severe it was.

cmhicklin

This is what the specialist told me with my DD. On boys, the flat spot is usually more noticeable, because they don't have the hair to cover it up.  SHE would be more likely to get her son one than her daughter if all the measurements were fine.  We decided to get one for DD, because I wanted to do the most possible so that she wasn't self conscious about it down the road.  We really waited longer than we should have, and even though it improved, it could have been even better.  She has a ton of hair, and you can't tell.

Lferr417

Yes - my son has tortocollis, brachycephaly and plagiocephaly.  He was right on the line between needed a helmet and not needing one. But the "crooked"ness of his head was VERY apparent and really bothered me (boys cant hide a misshapen head under hair). We were told that we should absolutely go with the helmet by the neurologist. It was also covered by insurance.

We went through NOPCO (boston based company) and I couldnt be happier. He got it on at 5months, at 6 months he just needed it over night and now his head is ALMOST perfect and we are just doing it at night and 2 days a week. He has his last appointment next week.

I am more than happy that we decided to helmet him because it took the worry and the stress off of me every time he was laying down. He HATED tummy time. I also suggest calling an early intervention for his tortocolis and perhaps looking into the WINGBO... see pic for the one thing that got my son to do tummy time The PT has helped him tremendously with his neck.

That was LONG! feel free to PM me if you have ANY questions

kangtini

When our son was 5 months old we went for testing.  His head looked  very flat and high to me, so I made a point of asking the doctor and she recommended going to see a specialist. We ended up getting a helmet that he wore for 8 weeks.  It made a HUGE difference.  My thought was you only have this small window to fix it and I didn't want my son to hate his head shape later in life.   Ours was covered 100% by insurance, but even if it wasn't I would have done it.  It was sort of a pain to go to the weekly appointments, but other than that we really never noticed it.  Our son didn't seem to mind it at all and it didn't hold him back from rolling/sitting/crawling, etc.   If you are interested I can send you our before and after images so you can see what a difference it made. Also, I think I would be much more inclined to do it for a son than a daughter because of the hair issue. 

kangtini

We have Aetna. It is my understanding that the insurance company looks at all the measurements and there are thresholds you need to meet, but no one told me what they were.

kmonroe2

I was told today that my insurance company (BCBS FL) wants to have written documentation of repositioning therapy and/or physical therapy for at least 2 months and a diagnosis of mod to severe plagio. 

We have been doing repositioning therapy but no PT. He is considered mild plagio. We are still going to try to have it approved by insurance. It seems doubtful that it will be covered, especially since I have a $5K deductible. 

The helmet will be $2,500 either way. The orthotic center (West Coast Brace & Limb) are very flexible with payment plans. Usually $500 up front and $250 per month. 

Lferr417

sgreen13 said:

My LO is covered by my husband's insurance - United Health Care. I'll have to ask him to check the policy. We just had our 3rd PT session and we are already seeing progress with her torticollis. 

We have United Health Care and they covered at 90% (under the medical equipment section) just had to meet our deductible... All in all we paid like $200 for it.

Well worth it even if not covered by insurance.