head shape ever "perfect"?

[Dean'smom]

Hi....I have to ask all of you, as this is becoming a battle right now between my husband and myself.......my son has had the endo procedure for coronal CS, and has been in the helmet for a little over 2 months. We have seen great results in that time, but there is still mild flattening on the left side of his forehead, but his eyes and nose have really straightened out. My question is, will his forehead ever be totally round? My husband wants to have him in the helmet until it is perfectly round, and I think his head looks great now, you really would not be able to tell that anything was different. We see our NS in 2 weeks, and at the last appt, 6 weeks ago, he said that Dean might be able to be done with the helmet come our next appt, Feb. 26.......I don't know what he will say about his head, he may very well say that he should wear it another month, I don't know. But if he says he thinks he's done, I want him to be done! I have had enough of the helmet! I think my son has too! Just thought I would see what some of your opinions/thoughts are about head shape, and whether or not it can be "perfected".

[Jennifer]

I totolly see where you are both coming from. Going through surgery, I pictured I would end up w/ the perfect round little head....not so much though. We had the full FOA/CVR procedure and for the first few months it was perfect....then nature takes it course, and her head grew how it wanted to grow....she did have a touch up surgery at 20 months as the one eyebrow area was completely flat (darn nature sometimes!)- so now the front of her head is pretty close to perfect. She has her imperfections--if you feel the back of her head (which we didn't have correct at surgery, and we didn't use a helmet), it's a bit 'crooked'- only obvious when her hair is flat and wet.

But I've also noticed that my two non-cranio babies....they don't have perfect heads either- you couldn't have told me that prior to Emily, but now that I'm a head-picker.....they don't have perfect little round heads....I'm not sure it really exists :giggle Having a coronal baby- I find myself fixated on eyes- as pre-surgery Emily definantly had the one 'wide' eye.....nobody's eyes seem to be perfect either! :giggle........


I'm curious to see what your NS has to say. :hugg Good luck at the appointment!

[bloom_ss]

My son did not have cranio, and even his head is not "perfect". My daughter's head is still rounding out since she only had surgery a month ago, but I don't expect her head to ever be "perfect" either. A lot of my relatives (who never had cranio) don't have "perfect" heads. My mom and all of her sisters have flat spots on the backs of their heads, but you would never know that from just looking at them. Personally, I wouldn't worry too much about it if it is not really noticable. =)

~Stephanie

[Dean'smom]

Thanks....I will let you know what our NS says this Monday.......I am also obsessed with eyes- I find that I look at everyone's eyes now......I must admit that I am a little bummed about the fact that there's a possibility that his head shape can change after we are done with the helmet......it discourages me to know that there might be another surgery down the line. I wonder if there are a large amount of kids who need touch-ups after either the CVR or endo procedure. I wish the worrying would stop, I just really want to enjoy my son during these baby stages, and for the most part I do, but I also find myself worrying about the future.....

[Rachael]

Hi there! We had PM'd a while back on cappskids. I just read about your helmet troubles, ugh! I am so sorry to hear that. Anna was discharged from helmet therapy early in Dec. and she is doing great. In response to the 'quest for the perfect head', I am sure it is never going to happen. We had great results from endo, I hope to see continued improvement as the suture is still open. She still has bi-temporal narrowing. That said, the improvement to her head shape is fantastic overall. If you weren't a head picker I don't think you'd call it out, however, I am obsessed with head shape LOL. We have seen a gradual and natural improvement, hopefully that will continue as her head grows. That said, I don't think she will ever have a perfectly 'normal' head.

Her head shape did not get any worse after we finished with the helmet. She just recently had her first birthday!! Best of luck to you and Dean.

[Dean'smom]

Hi Rachael-

Just the other day I was reading those PMs, reading about what you were saying about the helmet, etc. Dean is doing well- we just switched orthotist offices today, and I couldn't be happier. We have had a hard time with where we were going.....anyway- this new orthotist, who actually digitally scanned Dean's head back in November told us today that Dean will benefit from wearing the helmet another three months, just until his first b-day.........not 3-4 months of helmet therapy like we were told by our NS initially, but from what I read, most babies with CS are in them for 6-8 months. How long was Anna in hers? The good news is that we had another scan done today, (because we are getting another helmet to finish therapy), and the scan showed much improvement in his head shape since Nov. This is good. Not to mention that this orthotist office is soooooo much better than where we had been going, and we are much more comfortable. Down sides- is will cost us another 3000.00, we already paid 2,000.00, and it is 1.5 hours away....oh well- what can you do? Hope you guys are doing well- she looks so cute.....
I agree with you about head shape, we are so analytical about their heads, and others probably wouldn't see what we do. As long as we do the best we can, right? What have you been told about improvement in shape over time?

Amanda

[Rachael]

Hi Amanda! Great to hear from you. It sounds like things are moving in the right direction with your new orthotist. Bummer that it costs more $$ and is a longer drive. It will be worth it in the long haul (and boy doesn't it feel exactly like that sometimes??) :banghead

Anna was in her helmet for 7 months. That was pretty much what our NS had told us in advance. In fact when he discharged her from helmet therapy, I had a sinking feeling of panic, like without the helmet her little head would suddenly revert to it's former shape. I am glad that was not the case!! We see our NS tomorrow for our first follow-up post helmet, I will post back and let you know how it goes. He has told us that we should continue to see a gradual rounding out of her head until about the age of 2 1/2 when skull growth decreases. Here's hoping!!

BTW - I posted a pic of Anna in her helmet under the helmet thread, if you wanted to have a look. I am curious if Dean's helmet is similar...of course it wouldn't be pink like hers LOL!

I am glad to hear his scan showed good improvement!

[Dean'smom]

I saw Anna's pic Rachael, and it's too cute....hers was the same style as Dean's helmet now, but this Wednesday we will be getting a new one to finish therapy, and it's a little different style. I'm a little nervous about that.....I will post pics of him now, and of him in the new one. I am anxious to know how her follow up went. I wish our NS said 6-8 months instead of 3-4, that just got our hopes up.........oh well. Not the end of the world. I am worried about it reverrting back too....nice to know that is should only improve!