Anyone with experience with a "doc-band" or helmet for babies with brachycephaly? - update post #12

[apirateslifeforme]

This is really bothering me...

DS had his 6-month checkup on Monday and we've been referred for a consultation for mild-to-moderate brachycephaly. The pediatrician thinks we will have to get him the Doc Band to fix it. Looking at the criteria on the company's website, he really only has a few problems - his forehead is narrower than the back of his head (he was born this way), his head slopes downward from front to back and he has a slight bulge above his ears, but that's it. He hated tummy time when he was younger, but he finally started doing it, plus he's been sitting up for the past 2 months. In fact, he sits up for the majority of the day, but the above-the-ear-bulge has actually gotten worse and we're not sure why.

Anyway, just wondering if anyone has any experience with this. If the specialists recommend it, I'll agree to it because I know it's best for him, but I don't want my baby in a helmet! I won't be able to kiss his head or rub my cheek on that sweet soft baby hair for at least 3 months? Can you take it off for baths (and maybe for a few "formal" photos here and there)? And how on earth do they sleep in that thing?

 

[indygirl99]

Liz I am sorry you are still having to deal with this.

The "helmet" is like anything in that the more it is used the sooner you get rid of it but it certainly can be taken off for many different reasons. Definitely for pictures. Off for bath and snuggle time.

He will HATE it at first and fuss and try to pull it off but he will quickly get used to it. Keeping it on as much as possible and especially when he sleeps and time will pass quickly and you will be able to get rid of it.

My DIL joked that it was early training for wearing a bike helmet.

 

[mnrose]

Agreed. My son wore a helmet for about 3 months, and he got used to it remarkably quickly. It was a far bigger deal to me than it was to him. And, it comes on and off easily. Really, it's like a bike helmet. You do get lots of strange looks and comments from strangers, so be prepared for that. People can be so rude!

 

[cabanafrau]

I know young parents who just went through this. It wasn't easy on them to adjust to the idea and the mom was defiant and uncooperative about it, but dad was able to get with the program and get the job done, although it wound up taking about five months because mom was so combative about the idea. These are young college-age parents with an unplanned start to parenthood. It's not a good situation all the way around. The docs convinced dad that it was necessary and the window of development to tackle the issue and move on.

Mom, do it and be done with it and baby will be better for it.

 

[Skippy918]

My coworker's baby just got her helmet. She said she has to wear it 23 hours per day. She said the baby doesn't seem to mind.

 

[katie111]

Two of my nieces had helmets. They wore them 23 hours a day so they could take them off for baths & a little snuggle time. My SIL did say she got some comments and strange looks but overall they are becoming very common so most other parents are at least aware of them and what they are for. I have at least 3 friends whose babies have had them. None of them had any issues sleeping in it after the first day or two.

My son had a feeding tube in his nose when he was little so I know how hard this can be. We got lots of comments and strange looks. I have to say though that most people were so nice about it and just asked if he was going to be okay. He just had severe feeding issues but lots of people assumed he had cancer or something. You just need to be able to ignore people if they are being rude and be willing to smile and answer questions if people ask you about it. I personally preferred when someone asked me rather than just stared at my son but you will get both reactions.

Good luck!!

 

[tazdev3225]

My youngest grandson had torticollis and plagiocephaly. My daughter noticed something was off when he was about a month old. After physical therapy and trying to get him to switch sides when he slept didn't work he got his helmet. He never even noticed it. He wears it 23 hours a day. My daughter takes it off of him for baths and leaves it off after the bath. I am so used to the helmet on him that I forget what he looks like without it. If they are only saying 3 months you are lucky. My little guy has been in the helmet for over 5 months. He will be 1 next month so it comes off then.

I agree that you will get comments or people will stare at times. It happened when I had him out so I know it happens. Just ignore it. If the specialist recommends it go for it. You can get them in different designs, not just plain. My grandson has a skull and crossbones on his.

 

[apirateslifeforme]

Thank you all for the reassurance - I feel much better. I found decals on etsy and I think I could make it fun - we just need to decide if we get the Doctor Who ones for Mommy or the Patriots for Daddy

It's weird that this is happening because he spends very little time on the back of his head. Even when he sleeps, he turns his head from one side to the other all night. When he's awake, he's completely upright with nothing touching the back The pediatrician said it could begin in utero and he did have a rough start - he's the sole survivor of quads; his siblings had him squished under my hipbone until they passed away just before the end of the first trimester. Then he turned breech between 29-33 weeks, which I understand can be a factor as well. He did have torticollis, but that seems to have resolved on its own.

Well, since he's already working on standing up, maybe a helmet will be good for those inevitable falls And if we get any rude comments? I'm so tempted to respond with "It's a little extra protection for when we smack him around." (I'm KIDDING - we certainly don't, but it would be tempting to answer rudeness with snark.)

Well, we'll see what they say on Tuesday...

 

[Govols1997]

Hi, I'm an early interventionist and have served several families who had a little one who needed the helmet. Like others have said, it will become just another "thing" to do once you are used to it. I encourage you to call your states early intervention program. It's free and serves little ones with or at risk for developmental delays. And with your guys rough start, sounds like this might be him. It's an amazing program and can really help you understand his development and help him along the way.

 

[ronandannette]

Two of my nieces had helmets. They wore them 23 hours a day so they could take them off for baths & a little snuggle time. My SIL did say she got some comments and strange looks but overall they are becoming very common so most other parents are at least aware of them and what they are for. I have at least 3 friends whose babies have had them. None of them had any issues sleeping in it after the first day or two.

My son had a feeding tube in his nose when he was little so I know how hard this can be. We got lots of comments and strange looks. I have to say though that most people were so nice about it and just asked if he was going to be okay. He just had severe feeding issues but lots of people assumed he had cancer or something. You just need to be able to ignore people if they are being rude and be willing to smile and answer questions if people ask you about it. I personally preferred when someone asked me rather than just stared at my son but you will get both reactions.

Good luck!!

Hi, I'm an early interventionist and have served several families who had a little one who needed the helmet. Like others have said, it will become just another "thing" to do once you are used to it. I encourage you to call your states early intervention program. It's free and serves little ones with or at risk for developmental delays. And with your guys rough start, sounds like this might be him. It's an amazing program and can really help you understand his development and help him along the way.

I agree that this is not a super-alarming issue any more. One of DH's grandsons was in one during his infancy and while it did help the cranial malformation, unfortunately there was more at play and he has since been diagnosed with several different developmental delays. Little DGS (and his DMom) was a trooper about it at the time though; it wasn't great but he adapted really quickly.

OP - if your DS was already sitting unassisted at 4 months, that's pretty remarkable! It's been a long while, but I'm pretty sure my DH (neurotypical and without any physical challenges) wasn't sitting until quite a bit later.

 

[tazdev3225]

Thank you all for the reassurance - I feel much better. I found decals on etsy and I think I could make it fun - we just need to decide if we get the Doctor Who ones for Mommy or the Patriots for Daddy

It's weird that this is happening because he spends very little time on the back of his head. Even when he sleeps, he turns his head from one side to the other all night. When he's awake, he's completely upright with nothing touching the back The pediatrician said it could begin in utero and he did have a rough start - he's the sole survivor of quads; his siblings had him squished under my hipbone until they passed away just before the end of the first trimester. Then he turned breech between 29-33 weeks, which I understand can be a factor as well. He did have torticollis, but that seems to have resolved on its own.

They feel my grandson was stuck with his head down towards the end of my daughter's pregnancy and he was pushed against her pelvis somehow. It's not uncommon evidently. Torticollis does start to resolve once they can get some control of their neck muscles. My grandson spent a lot of time in an upright position and it didn't help with the bony structure.

Well, since he's already working on standing up, maybe a helmet will be good for those inevitable falls And if we get any rude comments? I'm so tempted to respond with "It's a little extra protection for when we smack him around." (I'm KIDDING - we certainly don't, but it would be tempting to answer rudeness with snark.)

We figured the helmet has saved his head quite a bit from his older brother. They are 14 months apart and the older guy doesn't get that pushing his brother is bad. The little guy just laughs. My daughter actually did say something along the lines of what I bolded to a smart mouthed young know it all mother. Shut her up real fast.

Well, we'll see what they say on Tuesday...

Just wanted to add I'm sorry for your loss.

 

[apirateslifeforme]

Just wanted to add I'm sorry for your loss.

Thank you. Not a day goes by that I don't think about them. But we're also very grateful to have our one healthy little boy

So his appointment was yesterday. This place is 90 minutes away, each direction. I thought it was interesting to look at the 3D imaging - from face-on and profile, he actually doesn't have any problems. It's from top down and chin up that we can see the issues. He doesn't have brachycephaly after all, but he has slight left plagiocephaly. It's ironic; at his one-month appointment, the pediatrician said he had a flat spot on the right side, so I guess we over-corrected! And his forehead is narrow, which we knew, since it was very obvious at birth. It's in his report that it was caused by in utero positioning and "good sleep patterns" (he's been sleeping through the night for over 4 months).

He was evaluated by an occupational therapist who had to do this with her own child, she said. She does recommend the band, not the full helmet, and she doesn't see it being more than 3 months. She doesn't see any developmental issues; he sits up alone, he stood up (assisted), and she even felt that he has already said his first words! He babbles a lot, but included in that babbling is "mummmmmaaaaa" and "da...deeeeee?" which she said is "Mama" and "Daddy" (and when he did the "mummmmmaaaaa" he was looking at me. Seriously). They had a toy that he has at home, and he was squirming all over, trying to get to it, even attempting to crawl to it.

They had some sample bands in the room and we tried one on him - he made a face and batted at it. Of course it wasn't made for his head, so I'm sure that one wasn't comfortable. So now we just wait for insurance, although we have a high-deductible plan and we know they won't pay anything.

I guess this is becoming more common. When we left, the waiting room was standing room only. I was surprised.

 

[indygirl99]

Thank you. Not a day goes by that I don't think about them. But we're also very grateful to have our one healthy little boy

So his appointment was yesterday. This place is 90 minutes away, each direction. I thought it was interesting to look at the 3D imaging - from face-on and profile, he actually doesn't have any problems. It's from top down and chin up that we can see the issues. He doesn't have brachycephaly after all, but he has slight left plagiocephaly. It's ironic; at his one-month appointment, the pediatrician said he had a flat spot on the right side, so I guess we over-corrected! And his forehead is narrow, which we knew, since it was very obvious at birth. It's in his report that it was caused by in utero positioning and "good sleep patterns" (he's been sleeping through the night for over 4 months).

He was evaluated by an occupational therapist who had to do this with her own child, she said. She does recommend the band, not the full helmet, and she doesn't see it being more than 3 months. She doesn't see any developmental issues; he sits up alone, he stood up (assisted), and she even felt that he has already said his first words! He babbles a lot, but included in that babbling is "mummmmmaaaaa" and "da...deeeeee?" which she said is "Mama" and "Daddy" (and when he did the "mummmmmaaaaa" he was looking at me. Seriously). They had a toy that he has at home, and he was squirming all over, trying to get to it, even attempting to crawl to it.

They had some sample bands in the room and we tried one on him - he made a face and batted at it. Of course it wasn't made for his head, so I'm sure that one wasn't comfortable. So now we just wait for insurance, although we have a high-deductible plan and we know they won't pay anything.

I guess this is becoming more common. When we left, the waiting room was standing room only. I was surprised.

Sounds like things are better than you feared. Good. Also good that she did the full developmental evaluation. That in itself had to help calm your worries.

And of course he knows you are his mumma he likes to see you smile.