Helmet failures

MissMeegs

Because we spent the last few months waffling and getting conflicting opinions on whether DS even needed one, we have only just now pulled the trigger and gotten his helmet after insurance came through and covered it. Went yesterday to pick it up.

So far? We are total failures and I'm regretting the whole thing and considering eating the $400 we had to pay for our portion after insurance. It's been 24 hours, and just UGH.

- I'm glad it doesn't seem to bother him much (when he's awake), that part is the only good part.

- It does NOT fit. She made a couple adjustments at the place yesterday, but nothing she did helped. It's way too loose, shifts around a lot on his head so it ends up covering one of his ears and settling way down on his forehead over his eyebrows so he has to crane his head around to even see anything. Because of this, we are constantly fiddling with it, taking it off, putting it back on. It's a pain.

- I know this is normal, but the sweating, ugh. He is drenched with sweat over his entire head after like an hour of wearing it. This seems like torture to me. I know this gets better, but how long? My poor baby, thank god it's not 95 degrees in the dead of summer anymore.

 - The big one: he can't sleep with it and we totally gave up. He didn't nap with it yesterday because they told me to take it off every couple hours for the first couple days, and I used this as an opportunity for his nap. He did wear it for bedtime and slept from 730 until midnight last night, really good! But then he woke up and would not go back down. We gave up, pulled it off, toweled off his ten gallons of sweat (and yes we dressed him very lightly for bedtime knowing this would be an issue) and he immediately went back down and slept through til 730 this morning.

This morning we put it back on and he wore it until his baby swim class at 11, but then he had class and immediately went down for a nap after, and we haven't put it back on him yet because he's still asleep. So far it just feel like we're failing, he's only worn it maybe 8-10 hours in the 24 since picking it up, I hate it and want to cry when I look at him wearing it, it's cumbersome and we can't even snuggle (he used to lay on my chest and I liked putting my cheek to the top of his head and smelling him and giving him kisses or stroking his hair) properly.

Is this just all typical adjustment and I'm crazy for wanting to throw in the towel so soon? I've just never thought his flat spot was that big a deal, I allowed myself to be pressured by the helmet people and his physical therapists who insist that he needed one. Blegh.

blue_elle

It gets better! The first few days we questioned it as well. It moved around a lot, the sweat, all of it. But that all seems like a distant memory now. Give it a little time, and don't be afraid to call for another adjustment if needed!

MissMeegs

@blue_elle‌ did they tell you why it moves around so much? I know it isn't supposed to be tight, but I was under the impression that it would at least stay put! Ugh.

SandFHasse

Ours moved around too. They said it was fine and was supposed to.

blue_elle

@MissMeegs‌ At our fitting they said the movement improves over the first week, which it did. They ended up adding a small pad to the neck area later to stop movement. As I understand it, the sideburn pieces and the edges of the neck are the hold spots. The rest should be lose to allow for growth (where growth is needed anyway).

MissMeegs

Biggest problem with it moving around is that it gets into positions that are uncomfortable for him while sleeping. He started screaming an hour after going down tonight and when I went in I found it was half twisted so one of his ears was stuck under it, and the forehead piece was practically touching the bridge of his nose. I just gave up again and took it off. He's a thrasher in his sleep so I don't see how he will ever get used to sleeping with it when it twists around on his head like that. Ugh.

blue_elle

That sounds too loose. M's moved, but not that drastically. I'd go back in and see if they can add some padding to those hold points.

MissMeegs

Yep, I will definitely be calling Monday morning. Will give the sleeping with it another go tomorrow night in the meantime. Still feeling like a total fail for letting him sleep without it our first two nights--like hello I'm no dummy, I know the damn thing won't work if he doesn't sleep in it and I also know he'll never get used to the heat if he doesn't just power through the horrible sweat. But I just couldn't let my baby try to sleep with a piece of plastic twisting all over his head and getting his ears all bent. Oy! >_<

jcwinsto

The movement seems odd.  I guess I could see a little shifting (maybe a 1/4" or so) but not that much.  The rest of it is normal.  I cried and cried the first few days because I just loved the snuggles with his head under my chin or against my neck.  The sweating got better for us after just a few days.  He sweats a little now but it's not bad.  As far as sleeping in it, did they give you an "amp up" time chart for wearing it?  We got one that phased up to 23 hours a day over 5 days.  I can get you a copy of mine if you think it would help.  I don't think he slept in it until the 3rd or 4th day.  What kind of helmet did you get?  We have the Starband.

MissMeegs

We have a DOC band from Cranial Tech. They told us for the first few days until he adjusts, to take it off for one hour every 3-4 hours to check for redness and let the sweat dry out, but they did say to try and get him to sleep in it from day one. So far we have not, though he did nap in it earlier (helps that we were on a long car ride, so I guess I can't count that!).

It seems like daytime is okay, it doesn't move as much and we are slowly getting used to it--it's just nighttime that I am dreading. I'm determined to try harder tonight and get him to sleep in it for at least a few hours.

MissMeegs

Whoo! Made it through our first full night sleeping in the band. He did well, he woke up three times at 1, 3 and 445. Then got up for good at 550. Not great but not bad (usually wakes at 630 or 7). I didn't have to rock him either, just reposition him and replace a pacifier. It still moves around way too much but I'll hopefully get them to fix it at his first appointment. Feeling much better.

SandFHasse

@MissMeegs DOC Band has a facebook site that is really good for support. I joined once we got our helmet and it helped to be able to ask questio.s and get support from DOC Band and other families.

MissMeegs

Well I am back to wanting to throw in the towel. It's 335am and he has not slept AT ALL tonight. My husband and I both have to work tomorrow and neither of us is going to survive. He shows absolutely no signs of falling asleep anytime soon despite hours of rocking, soothing, shushing, and every other goddamn trick.

There is no way having a round head is worth this misery. It never even looked that weird to me. Fucking hell.

blue_elle

How far in are you now? Is it the movement that's bothering him? That's fixable.

If it's just wearing it, I'd back of night time and focus on naps first. We had a schedule similar to BMReid where we ramped up slowly. By time he had it on at night he has been napping in it for days.

MissMeegs

Well, last night was MUCH improved, he woke up a few times trying to settle in, but after 10pm he was only up once! It was great, I was so encouraged.

But then he woke up this morning and seemed a bit "off", and by the time I picked him up from daycare he had diarrhea and a 102.5 fever. UGH! Doctor says probably just a stomach bug but says to let him sleep without the helmet until it goes down. And when we were making progress!

This is only our sixth full day in the helmet, and he went 23/7 only twice since we got it. The other days we gave up in the night and took it off for a few hours. But he's been wearing it all day consistently from day one. I realized tonight while thoroughly examining his head in the bath that he's got some "hot spots", if they are still there in the morning I'll call the clinic again. We don't go back until Friday morning.

Thanks to all for the support, it's been a rough week for my little man!