Great helmet debate

MissMeegs

Sorry if this is a long post, but I have never felt so indecisive in my life, and I need to get it out even if only to help myself figure out what to do!

A couple months ago the pedi referred us to a plastic surgeon that does free evaluations for helmets, because DS has some flatness. That doc at the eval told us he was "mild to moderate" and said he was 50/50 on whether he needed a helmet, so we decided to wait and see.

When we started PT, they noticed the flat spot and were very gung-ho on the helmet, and gave us a bunch of horror stories about kids who have to have bike and football helmets custom made for their crazy deformed heads, and referred us to a different place (Cranial Technologies in northern VA) for another evaluation. Since it was also free, we went this morning.

Well now I do not know what to do. We were leaning towards no helmet, because he honestly looks fine to us.

But of course, the Cranial Tech person said his case was "moderate to severe" and gave us a long spiel that felt very car salesmanish, including the exact same "custom made football helmets!" line the PT gave us (are they in cahoots? Does the PT place get a cut of the profits?).

She also took a 3D image of his head and showed us all the ways it's messed up, and I just stood there nodding at all the "abnormalities" she was pointing out but I literally couldn't really see them. The only thing I found noticeable on her images was the flat spot in the back, which is noticeable when you're looking at it from above. You can also notice a slight difference in the shape of his head when viewing him in profile from each side separately. But it's slight.

DH agreed after and said he had no idea WTF she was talking about either in pointing out the stuff on the 3D image. But he worries about this sports helmet line and doesn't want DS's ears to be crooked.

Argh! Was anyone else on the fence? What did you decide in the end? Money is also going to be a deciding factor, once we learn what insruance will cover. If they don't cover anything, it's going to be a no for us, because we do not have the extra $4,000 for this. Again: argh!

SandFHasse

We weren't really ever on the fence about whether or not we should get the helmet. At first we were going to Hanger Prosthetics and we has problems with them. We now go to Cranial Technologies.

At our first appointment they did the 3d pictures and I could see the abnormalities with DS's head. In some areas he was mild to moderate and others moderate to severe. They never sounded sales person -y to me. She explained the helmet and what it would do. Our tech also said that she didn't think it was going to get worse, but also didn't think it was going to get better. She sent me home with all the information and told us to think about it.
We decided to go ahead with it and we have noticed a significant difference in his head shape.

Never once did we hear anything about needing to get custom football helmets or bike helmets.

Our insurance is weird and we each have a $2500 deductible so we are paying for his helmet. We got approved with Care Credit so we have monthly payments.

We have 3 weeks left with his helmet and his ears are no longer crooked, his forehead is evened out and the back of his head is filling in. We are happy we went with the helmet.

I think it is a personal decision. If you and your husband don't see anything wrong and he's mild to moderate then I probably wouldn't do it. We could see the flatness on his head and the bulges on the sides. Is there another tech at Cranial Technologies that you can see for a second opinion or another clinic altogether? Or maybe even send the notes and pictures to another Cranial Tech location to see what they say? I would also find someone to ask about the football helmet stuff.

blue_elle

We use Starband and never felt pressured or like we were getting a sales pitch. In fact, despite the fact that his head obviously was uneven (plagiocephaly) and in the moderate category, they were completely on board with waiting and rescanning later in the hopes that there would be some natural improvement. We did wait one month and return and there was extremely minimal improvement despite a good amount of growth, so we opted to go forward. We're thrilled with the progress 7 weeks in. Insurance did not pay a dime since ours listed cranial orthotics as cosmetic.

Did they give you a print out of his scan with measurements noted?

pinkyxboo

We started seeing a cranial specialist back in May for flatness. At the time, LO's diagonal difference was 11.4. The doctor said because it was early on, she wanted to wait and see if lots and lots of tummy time and repositioning would help improve the flatness. We went back 4 weeks later and her diagonal difference only improved to 11.2. At that appointment, the dr was pretty set on a helmet, but being that we didn't have 3000 dollars on the spot, we decided to give it one more month. She was okay with that because LO was still in the "rapid head growth" age range. When we went to her 3rd appointment in July, after the 3d scan, LO improved from 11.2 to 9.2. We were very happy because the doctor said with that kind of improvement, it only put Lo 3 mm outside of the "normal" range. She said at that point a she wanted to wait on the helmet because LO was improving so well on her own. Our next appt is in sept, and if she is not in the normal range at that point, then we will have to reconsider the helmet. But as of right now, it's looking like our tummy time and repositioning techniques paid off.

MissMeegs

She is sending us the package with the images and measurements, along with the insurance estimate, in a few days, and told us to think about it. I'm almost hoping insurance comes back with a goose egg, because that will make the decision quite easy!

I wouldn't say she was pressuring us, maybe I shouldn't have made the car salesman comparison. But it did sound like a memorized spiel... One thing the plastic surgeon we saw said was that we should be wary of the helmet clinics because they have one job: to sell $4000 helmets. Yes they helmets do benefit a great many kids so it's not like they're a bunch of scam artists, but he said for a (in his opinion) 50/50 case like ours they're going to say you really need the helmet every time.

Thanks for your stories all! I guess we'll just wait and see what insurance says.

jcwinsto

We also went with the Starband system.  I wouldn't say it was salesman like but I was definately aware they had a bias.  At 5 months H's head was 14.1 mm difference (plagio).  It is pretty easy to see the difference.  That  put him in the moderate to severe catagory.  Insurance denyed it saying it was cosmetic so we decided to wait a bit and see what happened.  At 7 months we went back and got another scan.  Even though I thought it had improved it hadn't changed at all.  We decided to get the helmet OOP because it was visibly obvious that he had a crooked head and the stats say that 50% will outgrow it and 50% won't.  Money is not that tight for us so it wasn't too big a deal.  With that said the place we went through gives a discount if you pay OOP and will set up a payment plan with you.  It's normally $3500.  They dropped it to $3000 and didn't charge me for the rush fee on the helmet.  They required $1000 down and our payment plan could be as little as $100 a month but I decided to just get it done with and said $500 a month.  It should be paid for by the time he gets it off. 

blue_elle

I'd be interested to see the numbers, but my gut reaction to your post is that if you can't see the flat spot I'd skip it. His head will continue to change as he's off it more. Yes, plagio/beachy can cause some issues, but that would be in severe cases and those are visible, especially after a bath when the hair is wet.

MissMeegs

Edited because I shouldn't do things from memory:

I got their report and his Cranial Vault Index number is 10.7, which they mark as severe. The diagonal difference was 16mm, and they have it qualified as "severe deformity". (Which, sorry, still not seeing that. Yes, his head is not symmetrical when viewed from above, but "severely deformed"? No, helmet-sellers, it is not.)

I think we've decided to see what insurance says and if they cover a good portion of it, to do it. Unfortunately, if they won't then I'm not sure we will. We are having another baby in December and our budget is shot to hell right now. We just can't afford a brand new debt of $4,000 on top of all the other bills we're trying to pay down and the looming prospect of two babies in full-time daycare come 2015.

UGH! I hate money.

SandFHasse

I just looked at DS's notes and was trying to compare. According to the chart that Cranial Tech sent anything between a 6 and a 12 is moderate. A 10 would be on the higher end of the moderate ranking. DS has a 7.

I can't find the other number though.

If you guys don't see the deformity and you can't afford it then don't do it. I think you will do what is best for your LO. Not all babies need them. Some lady just stopped us at the store and told us her nephew needed one, but didn't get one and he is fine.

It is expensive. Plus all the gas to drive to appointments. Our clinic is a good hour from our house so for the first month we were paying $20 a week in gas to go to 5 minute appointments plus the cost of the helmet.

MissMeegs

I forgot about the gas for getting to/from all the appointments, and the time away from work, etc. Our clinic is 30 minutes away.

It really is such a big hassle for what two different doctors have assured us is only a cosmetic issue--actually, even the Cranial Tech people assured us that his head shape is having no impact on his overall development and never will.

It's all just mommy guilt I guess. I know he'll be technically fine without it--and he's still obviously the world's cutest baby even with a slightly mishappen head and slightly off kilter ears. ;-) But I want to do all I can to make sure he's got everything he needs. Sigh.

MissMeegs

HUZZAH! Insurance came through and they will cover almost all of the cost. This makes the decision pretty easy, our cost will only be $440. What a relief.

SandFHasse

That's awesome!! Happy for you guys

blue_elle

Glad to hear! That makes the decision easy!

tootsscott

@MissMeegs‌, glad to hear your ins covered most of the helmet! Of course your decision would have been fine either way, but just adding my experience!

Our LO started to get a flat spot around 3 months and hubs and I decided to wait and see if he would start looking around more (he was a left-looker) and when he didn't, we went to a pediatrician who said there's no real research that supports the fact that helmets work. We decided to have a consult with the Custom Orthodics place near us who recommended the helmet.

We went ahead with the helmet anyway because our opinion was that we'd rather do something than nothing! If the helmet didn't work, that would suck, but if it did, then great! I know kids (and adults) can be cruel and we wanted to prevent any potential teasing from happening as he grows up. In the 2 months he's worn the helmet we've noticed a significant change and we are very happy!!

Also, attaching a photo bc he looks so darn cute!

MissMeegs

tootsscott said:

@MissMeegs‌, glad to hear your ins covered most of the helmet! Of course your decision would have been fine either way, but just adding my experience! Our LO started to get a flat spot around 3 months and hubs and I decided to wait and see if he would start looking around more (he was a left-looker) and when he didn't, we went to a pediatrician who said there's no real research that supports the fact that helmets work. We decided to have a consult with the Custom Orthodics place near us who recommended the helmet. We went ahead with the helmet anyway because our opinion was that we'd rather do something than nothing! If the helmet didn't work, that would suck, but if it did, then great! I know kids (and adults) can be cruel and we wanted to prevent any potential teasing from happening as he grows up. In the 2 months he's worn the helmet we've noticed a significant change and we are very happy!! Also, attaching a photo bc he looks so darn cute!

Thanks for sharing! He does look super cute!

We are still waiting on final approval from insurance before we can set up his fitting. Anxious to get the ball rolling since he's already 8 months old. Blergh!

SandFHasse

If you don't hear from them in a week call and bug them. Our insurance company said approval shouldn't take longer then that.