Positional Plagiocephaly

[Xithras]

Does anyone here have any experience with this? My five month old has what I'd consider to be a pretty severe case (right ear over an inch back from his left ear, right forehead protrudes about 2CM, left side of his head flat all the way back to the "point") but our ped insists that repositional therapy is all he needs. I've been repositioning him for two months with only minor improvement, and since he's now rolling over on his own I can't even keep up on that anymore. He gets at least two hours of tummy time a day, spends about half of his sleeping time on his stomach, and yet his head is still so deformed that my other kids have taken to calling him "elephant boy".

Should I demand a referral to a specialist from the pediatrician? Should I calm down and keep up with the repositioning for a while longer? Neither of my other two had this problem, so I'm not quite sure how to deal with this, or what's "normal".

What about the treatments? I've heard that treatment ranges from helmets and straps to recontructive surgery, and was wondering what the pro's and con's of each were. Since about 1 in 60 kids born in the last decade has Plagio to some degree, I'm hoping that some of you may have dealt with this or had friends and family who have.

[mopinko]

1. don't know anything about it, but

i do know that dealing with doctors is one of the great pains of parenthood. if the other kids are calling him elephant boy, i would put my foot down. time is not on your side.

[Xithras]

5. I get to deal with LOTS of doctors with this one.

The poor baby has severe eczema, a benign tumor on his head (which he'll be having surgery on in a few months, plagio, and hypospadias (which he's having surgery for next month). The poor kid is developing a real fear of doctors, and my wife is having a hard time dealing with all of the constant medical worries.

Part of the reason we hadn't pushed harder on getting the plagio treated earlier is simply that we've been so caught up in his other conditions that a misshapen head seemed kind of minor. When the kids started calling him elephant boy recently, I knew I had to do something about it though (and yes, they do get punished for the name calling).

[mopinko]

8. you've got my sympathy there

i have 2 kids with chronic problems and have some health troubles myself. it can be very overwhelming. especially the part about sorting out the morons from the good ones.
good luck

[Pithlet]

2. My neice had that problem.

Hers was not the worst I'd seen, but it was a bad case. Her ears were also very uneven. She went to a specialist and was fitted with a special helmet that she wore for about 6 months.

I do think the younger your baby is, the easier it will be to deal with it. It couldn't hurt to see a specialist. I don't think it's all position. I do think some of it is genetics. Neither of my boys got much tummy time because they hated it, but we had no problems. My sister's neices (her husband's brother's girls) both needed the helmets also, so I think that was something that ran in that family. Somr babies may be more prone to it, and need additional therapy.

Your doctor may be right, but if you see a specialist and they concur with your doctor, you'll feel better about it. If they don't, and suggest other therapies, then you'll know. :hug:

[Xithras]

4. How old was she when she got the helmet?

I was told the same thing, and that babies respond the best when they're treated between 4 and 7 months of age. I think I'm going to push to see a specialist.

BTW, do you have any idea what the helmet cost your sister? I've read prices ranging from $500 to $5000 and I'm a bit concerned because my insurance only covers medical equipment up to $2000.

[Pithlet]

7. Next time I tallk with my sister, I'll ask her the details.

I believe she was around 6 months, if I remember right. The helmet is expensive, but my sister got her insurance to pay for most of it, although not without a fight, I'm afraid. If cost is an issue, there may be some programs to look into, something like March of Dimes, maybe?

[SoCalDem]

oops.. I duped

:hi:

[SoCalDem]

3. A specialist...stat

Craniofacial issues are solved faster on very young.. even if it involves non-surgical treatments..

Two of my boys had "melon-heads", and the youngest's head (looking down on the top) looked slight;y triangular.. It freaked me out, but the doctor reassured me that it was within the range of normal.. he
"grew into" it, and once he got hair it was not that noticeable.. He's the smart one in the family, so maybe his large brain needed a slightly diofferent configuration :P..

Follow your gut instinct and go to a specialist.. Better to be reassured by an expert, that to finally end up going, and finding out you should have come months sooner..

:hug: to you and your little one:)

[Xithras]

6. Will do.

I did a bit of research on the 'net last night and found all kinds of useful resources. It turns out that the longer I wait, the longer he'll have to wear it. Since it takes a while to do the head molds and get the helmet made, the earlier we start the better.