*** ROARINGROCK ***

LucyPevensie

OK ... back to Jack's head!  I just called and made him another appointment with a different pedi (same practice) - the other pedi did not even really look at his head - at all - at his 4 month appointment.  And I noticed the other day when looking down at his head that his forehead has a slight bulge on the same side as where the flat spot is in the back.  If you google plagiocephaly images - it's classic plag.  Jack's is not severe, but I don't care, I want it evaluated - the fact that it's there at all is very distressing to me.  And he's favoring laying on the right side of his head as much as ever.  I'm upset. 

So - questions for you - who first noticed Ginny's spot?  Did her forehead have the corresponding bulge on one side?  How did pedi evaluate her?  At what point did they refer you out to a specialist?  And what did her physical therapy consist of?

I reposition him constantly.  We do at least a half hour of tummy time every day.  I have a boppy nest noggin to keep pressure off when he's in his bouncy or swing or on his back on activity mat.   He NEVER naps on that side of his head - he only flips to it at night but then is on it for several hours, obviously (because I'm asleep too.)  I don't know what more I can do - I think we need more help.  UGH!!!!!!!!!

I hate the pedi I saw recently.  She is a condescending idiot.  And she didn't even look at his head.  What a jerk.    

roaringrock

oh man! now I REALLY believe you are my twin. I'm so sorry.

 

I was the first one to notice the flatness on ginny's head. but come to find out, both of my sisters had seen it and never said anything to me. nice. 

at first I only noticed the flat spot then her eye started to look odd -- smaller actually. I mentioned this to my pedi (who I totally love and trust) and he was honest "I see it but I'm no specialist." he wanted me to meet with a plastic surgeon who operates on babies' deformed skulls. we couldn't get in to see him without waiting 2 months. we were then redirected to the cranial tech people. after a major photo shoot and lots of measuring, ginny's dx was pretty obvious. she had full-on plagicephaly. it was pretty clear once you saw the 3d mold of her head. the flat spot was creating the shift in her eye (asymmetry) as well. going with the head band was a no-brainer.

the physical therapy is done 5 times a day. simple exercises to help with the neck muscles. we also have to carry her around on her side which creates a gentle stretch and lengthens the muscles. unfortunately, she STILL favors sleeping on her left side. we now roll up a towel and create a wedge under her body. this helps a bit to keep her facing right. it is battle I'm afraid.

if I were you I'd talk with your pedi that you do like. he/she should be able to direct you to the right people. the key thing is, catching this early. treatment is much faster when the child is younger. I'm sorry you have to deal with this crap as well. getting a specialist to evaluate jack is necessary though. you're doing the right thing. follow your instincts.

sending good thoughts your way. and please keep me updated.

 

Mrs.K&C

Totally butting in since Sabrina has also dealt with plagiocephaly I thought I'd chime in...

I noticed it first at about 2 months old. I emailed our pedi a couple times about the severity of it, he said it was common, not to worry. I brought it up at her 4 month appointment, he said it was fine (her head is very clearly flat on one side). Brought it up again at an appt at 5 months, he said, "I'd call it moderate...worst than most but better than some." I asked to be referred to a specialist, which he did. 

Specialist said the same thing...moderate in comparison to the very severe cases. She doesn't have any asymetry of her eyes but her right ear is pushed slightly forward due to the flattening. We discussed the helmt, specialist did not necessarily recommend it but said if we wanted it, she would coordinate it. I had done a lot of research myself and my stance was the same as the specialists...that it likely wouldn't make much of a difference compared to doing nothing(meaning no helmet) as seems to be the situation in cases like Sabrina's. 

We did start physical therapy, which I hate and she hates even more. We work on neck stretching exercises and we also work on her gross motor skills to just try and get her off of her head (getting her to get herself into a sitting position, rolling more, etc). Frankly I haven't seen much improvement in her motor skills but since she sits unsupported and has for well over a month, her head is already getting better. It still looks very flat, but it's getting bumpy which means it's popping out some. The specialist was very clear that the flatness would be quite apparent until she was about 15 months old. She also was very clear that to her, who sees positional plagiocephaly all the time, Sabrina's head was simply a "variation of normal since the back to sleep campaign." I was quite irritated with my pedi for not doing anything at her 4 month appointment, but he felt the same. Very common, and will likely round out in time.

I had the noggin nest, but since you're not supposed to use it while sleeping, it didn't do us much good. We positioned her different each night, nothing helped. She did not spend time on her back during the day, but she started STTN at about 2 months (and long stretches before that) and she just sleeps in the same position, on her back with her head tilted a bit and it made her head flat. Her head was a little pointy when she was born which apparently can also be a factor in flattening. At any rate, I felt terribly guilty but in hindsight, we did nothing wrong except let her sleep at night.

I focused on her head constantly for months. I honesty was embarrassed to take her places because I thought people stared at her head. Some did. I worried constantly about it. I still worry and I'm still concerned, but not as much so. I had to let it go once we made the decision to not get the helmet. 

Sorry to hijack your post, but I know when I was really at my worst dealing with her head isssues I appreciated others sharing their stories with me. I have two co-workers whose first borns each had flat heads they said as bad as Sabrina's and you can't tell at all now. One isn't even two and it's not even noticeable. The other is 4 and not noticeable, although her mom says she thinks it's still flat since her pigtails are always uneven...but I think it might be the mom's hair dressing abilities and not the once-flat head.