When our LO was about 3 months old, we noticed some flattening of the back of his head. I knew that this was more common these days due to babies being put on their backs to sleep. We brought it up with our pediatrician, who agreed that there was mild flattening (plagiocephaly/brachiocephaly) and that we should do at least an hour of tummy time a day, and re-evaluate the severity at his 4 month appointment.
We had been using the fisher price rock and play sleeper and she told us to stop using this immediately and switch his direction in the crib.
At 4 months, despite our best efforts: tummy time, no rock and play, crib rotation; the flatness had become very severe. He has bulges over his ears from the condition, as well as extreme height and forehead length. Our pediatrician now ranked him in the severe range, and advised us to seek specialist treatment.
In our area (South Florida), there are 3 different specialists dealing with plagiocephaly. Since I knew treatment was life changing and potentially expensive, I asked my local Facebook mom group for recommendations. I got an overwhelming positive response in favor of two of the specialists and an overwhelming negative response regarding the other specialist.
Of the two that were recommended, I called to see if they accepted our insurance and both said maybe, but it was a complimentary evaluation. One was 45 min away, the other was 2 hours away. The closer one had a much longer wait though (6weeks!) and I wanted to get him evaluated ASAP so I chose the one further away. (Willing to share the name privately)
At our evaluation, they put a panty hose type mask over his head and sat him on a stool in the middle of the room. He didnt fuss and multiple cameras took a 3D picture of his head. The evaluator told us that she saw a lot of asymmetry and it was severe, but we would get a detailed picture and evaluation via email. She also said that he would need treatment via a helmet, and due to the severity would likely need two of them, since he would outgrow the first one quickly. She said that they had an insurance coordinator that would see what they could get covered.
A week later, we had a detailed report as well as word back from the insurance coordinator. Our insurance would cover most of the cost, through a third party medical supply company...but they would handle all the details.
I took him back to the facility (2 hours away!) and they took a more detailed picture of his head, again with a stocking mask covering his head. They used this picture to make his helmet.
The price of the helmet was $3800 before insurance (and we were probably going to need 2). Our insurance covered $3000, so we had to come up with $800 out of pocket.
We went back a week later (another 2 hour trip!) for the fitting. He didnt seem too bothered by the helmet. The helmet was pretty boring white- there were no color options like at some specialists. You have the option to decorate yourself, but we didnt bother. He was also diagnosed with torticollis and the specialist showed us some exercises to stretch and strengthen the neck muscles.
He's been under treatment now for about 2 months. He requires biweekly adjustments of the helmet. The helmet is worn for 23 hours a day. We've been pretty strict about following the protocol, only taking it off for baths, swimming and feedings.
The main side effects are skin issues and we need to be vigilant about cleaning...luckily we've had no problems.
We've had quite a few stares and questions but quite frankly they don't bother me. One of the mommies in my mommy and me group whose son also is being treated is having a tough time with this.
His asymmetry was correctly extremely quickly and now we are focusing on curvature. We recently moved to Texas, and thankfully the specialist is a national company and so we just had an appointment here. The therapist saw him for the first time and said there's a huge difference between his head, and the 3d mold of how his head used to look. We definitely see an improvement.
At our appointment we got the good news that he will probably only need it another month, and no second helmet should be needed! That saves us $3800!
So far we are really glad we had this treated. His head shape has come a long way.
Some things I learned:
-wish we had started treatment earlier, the bulges over his ears won't go away.
-wish we'd never used the rock and play
-glad we used a national company: they were able to get insurance to cover us (the other co couldn't) and we were able to move seamlessly. Our therapists in both locations were awesome.
-some doctors refer torticollis out to physical therapy but we were able to do the exercises at home and they worked!
-it's super important to strictly adhere to keeping the helmet on....I thnk this is why it's working so well for us.
I know that was a novel, but just wanted to share in case anyone else goes through this!