Hi ladies - I could use some advice/thoughts/insights.
Andrew's been recommended for the DOC band - he has a pretty flat back of his head (brachy) and a slight plagio tilt to the right. It is noticable (especially the back), but not too bad. The specialists said he was "moderate" but his developmental specialist said "mild".
In any case, I'm having a real hard time with this and can't decide if we should do it or not.
For those whose LOs have or had it - how long did they wear it? are you happy with the results (anyone not notice a big difference or regret it?) How long did it take for them to get used to it? And how bad was it in the summer?
Anyone out there recommended the helmet for their LO but decide NOT to do it? Why? Any regrets?
I appreciate any thoughts - we need to make a decision soon, and I'm so torn over if this is necessary or purely to fix a cosmetic issue that I don't think it too bad to begin with. Uggg...
Re: plagio moms (to helmet or not to helmet?)
Our situation was slightly different but I thought I would add it just to give you more information.
DS has had 3 helmets over the last 10 months and has one month left to go. His case was considered severe. We were definitely doing the first band regardless if if was covered by insurance or not because his head was extremely flat on one side from inutero. It was the best decision we made. We saw instantly the changes to his head. We ended up doing bands 2 and 3 because they were covered by insurance. We have noticed a difference with all 3 bands, but definitely not as much as the first one.
For us, it wasn't just appearance of the shape of his head. He had a pronounced neck tilt because of it and he was proned to only use his left hand. We also did PT with him. They warned us of issues down the road of TMJ because of his asymmetry so that helped us also make the decision.
It was an easy decision for us because his case was severe. Our neighbor's DS (who is now 6) had a mild-moderate case and opted not to do it and honestly you can't tell that his head is flatter on one side.
2 chem preg, 4 failed IUIs, 2 canc IVFs, 2 BFN IVFs, IVF #5 = BFP!!!
3/23 Beta #1 @ 17dpo = 913, Beta #2 @ 19dpo = 1724, Beta #3 @ 21 dpo = 3240
First u/s 3/29 @ 5 weeks 2 days - 3 sacs 6 weeks 3 days - 3 heartbeats 8 Weeks - Lost Baby C, Babies A and B going strong
Jake wore his Star Band for about 4 months. It was such a good decision. Yes, it was a pain in the butt, bot not for him...for us! My husband really hated the darn thing by the end. Yes, he was sweaty in it last summer, but did it keep us from going to the beach? No! Did it keep us from swimming in our pool? No. We were probably too liberal with taking it off whenever we wanted/needed it off, but it made a great impact on Jake. He had slight facial asymmetry and his ears were not level with each other as a result of the side flatness, and now it's alllllll better! In fact, at Jake's 18 month pedi appointment this week, I pointed out Jake's remaining bit of flatness to the doc, and he laughed at me!
Good luck!
We are actually getting ready to go pick up Gwen's, and it took me a while to warm up to the idea. Honestly, I am still not in 100%, but I am going to follow all recommendations because to me there is no point in doing it half assssed if we are going to do it. I digress!
Gwen's was mild plagio and brachio. Her issue is that repositioning is not answer enough as she can not be on her tummy long enough during the day due to low tone (preemie related) and reflux. She has developed torticollis from it, and our PT thinks that it will be beneficial. Honestly to us the biggest deciding factor was insurance. Ours covered it 100%. We had a 20.00 copay, and then nothing. I struggle with her thinking in the future that we did not think she was perfect the way she was ect. I never really cared about what strangers on the street would think/say.
We are supposed to have her in it for 6-9 weeks, so we will see. To me it IS cosmetic, there are others here and elsewhere who will vehemently disagree, but that is life!
I see it as not much different from other things we do to "alter" our children from how they were made like circ'ing.
Good luck in your decision. I really had to work on how I viewed it, And still do everyday. I think a lot of it is an industry/business, but it also can be necessary for extreme cases.... total fence rider here!
Yeah, I'm beginning to think this is much more about me then him!
This was definitely the truth for us. We struggled about it all - how it looks, appointments, taking care of it - and DS has no issues at all with it. I kept having to tell myself that this is good for him and I needed to get over the rest of it.
2 chem preg, 4 failed IUIs, 2 canc IVFs, 2 BFN IVFs, IVF #5 = BFP!!!
3/23 Beta #1 @ 17dpo = 913, Beta #2 @ 19dpo = 1724, Beta #3 @ 21 dpo = 3240
First u/s 3/29 @ 5 weeks 2 days - 3 sacs 6 weeks 3 days - 3 heartbeats 8 Weeks - Lost Baby C, Babies A and B going strong
We got J's helmet right before he turned 5 months old and he was in it for 3 months. I am SO GLAD we did it. He had plagio as a result of tort (which we did PT to improve). He had it during winter and was still a little sweaty sometimes but we used infant gold bond powder in it which helped a lot.
J's ear's were off, and if you laid him on his back and looked up at his forehead from his feet, you could see one side bulging out. He was not happy the first 4 days he had it. Didn't cry, didn't affect his sleep...he was just sad. After that, he never noticed it. We would take it off for about 30 minutes in the morning and 45 minutes - 1 hour at night depending on if it was a bath night or not.
You need to have them wear it 22/23 hours for it to be most effective. J's head looks great now!
DS's head was REALLY flat at 2 mos and we banded at about 4.5 (they messed up the first band). He wore it for 9 weeks and outgrew it. We decided to not get a second one as his cephalic index went from +5.56 to +2.5. I still see a slight bit of flatness so I may decide to get the second one - still undecided. Our insurance denied us but we got the contracted amount. We knew his head was pretty flat but when we saw the pictures they took we were like OMG, it's REALLY flat, GL!
Edited: DS also had brachycephaly (which I understand may take the longest to correct). He started with very little asymmetry and now has none. I don't know if it's because I know about it (the flatness) that I still see it or if it's really noticeable.
Our pedi said that we could get a band for our daughter but that he didn't feel it was truly medically necessary and would be more just for cosmetic purposes. She had a flat spot in back and her forehead appeared pushed forward if that makes sense. We struggled over having to decide and I envisioned my 15 year-old daughter coming to me crying because kids were making fun of her head and my thinking about how we could have done something but had decided not to. In the end, however, we opted not to get the band and her head has actually evened out quite a bit. I don't regret not having done it as in the end, I think what we were noticing more than the flatness in back (which has improved) was just that she has a big head and no amount of banding will change that. I will say this, had her ears been uneven I definitely would have gotten the band.
Kelly, Mom to Christopher Shannon 9.27.06, Catherine Quinn 2.24.09, Trey Barton lost on 12.28.09, Therese Barton lost on 6.10.10, Joseph Sullivan 7.23.11, and our latest, Victoria Maren 11.15.12
Secondary infertility success with IVF, then two losses, one at 14 weeks and one at 10 weeks, then success with IUI and then just pure, crazy luck. Expecting our fifth in May as the result of a FET.
This Cluttered Life
Thanks to all for sharing. I think I know the "right" answer, it's more that I don't want one more thing for this poor little guy to have to deal with. I appreciate everyone's perspective - and if anyone else wants to chime in, I'd love to hear it.
One thing is for sure...if we get it, I'm getting some super-cool paint job (a la Armywife...) for my boy!!
If you can imagine in 15 years or so, the style among teenage boys is totally buzzed hair - and if you are OK with your son being self-conscious or teased about his head shape if he attempts to wear his hair that way - then don't helmet. If you can imagine 40 years from now your son is balding or totally bald - and is self-conscious about his head shape and so wears a hat whenever he can and feels nervous when he can't (at work or in formal situations) - then don't helmet. If you are OK with your son saying to you, "WHY didn't you fix this when you could - now there's nothing I can do," then don't helmet.
For me - these were the reasons (in additional to physical concerns like TMJ) we DID helmet. Jack had plagiocephaly with mild facial asymmetry and ear asymmetry. We did not achieve perfect correction as Jack grew out of his helmet in 3.5 months and we were not told to get a second helmet (we should have advised to do so, but it's not common with STARbands, so we weren't. I regret that I did not ask more questions or pursue additional treatment on my own at that time.) But in spite of all that - I am SO GLAD we did get a helmet - we achieved some correction - and we stopped his deformational plagiocephaly from getting worse. Jack's plagiocephaly was considered mild/moderate at 9mm off on the diagonal - he got to 7mm in a helmet and to 5.9mm after his helmet (improving an additional 1.1mm on his own in 9 months - I had him scanned again that's how I have that additional measurement.) So he still has mild plagiocephaly but it is unnoticeable by anyone but me at this point.
Your son was at risk for this condition as a preemie - he had a softer skull when born early and his time in the NICU started the ball rolling - it is very common and obviously nothing you did wrong. You now have an opportunity to correct this condition - you will not have this opportunity down the road as you know - it's a very limited window of time. The younger they are when they get the helmet (starting around 4 - 5 months) - the better results you'll see - although some correction can still be achieved even after they're a year old in a helmet (just not as much as when they start younger.)
"When it comes to sleeping, whatever your baby does is normal. If one thing has damaged parents enjoyment of their babies, it's rigid expectations about how and when the baby should sleep." ~ James McKenna, Ph.D., Mother Baby Behavioral Sleep Center, University of Notre Dame
"When it comes to sleeping, whatever your baby does is normal. If one thing has damaged parents enjoyment of their babies, it's rigid expectations about how and when the baby should sleep." ~ James McKenna, Ph.D., Mother Baby Behavioral Sleep Center, University of Notre Dame