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Parents whose child had to wear a helmet due to craniosynostosis
Posted on 8/30/15 at 10:11 am
Posted on 8/30/15 at 10:11 am
How long before the baby gets used to it, if ever?
My kid seems very stubborn with this helmet..I don't see him ever becoming comfortable with it on
My kid seems very stubborn with this helmet..I don't see him ever becoming comfortable with it on
7
Posted on 8/30/15 at 10:18 am to tiggah1981
We decided against using it despite the doctors recommendation. I read too many reviews about how pediatricians push them when the child may not need it. My son is now 2 and 1/2 and his head is fine.
Posted on 8/30/15 at 10:23 am to tiggah1981
I don't think they do. I remember my aunt and uncle fighting my cousin to wear one.
Posted on 8/30/15 at 10:24 am to tiggah1981
Mine hated it. He never got used to it and we have up on it after a couple of months. It was uncomfortable and hot. He is fine now and his head is just fine.
Posted on 8/30/15 at 10:35 am to UHTiger
That's what I figured..my wife is swearing that ours will get used to it because babies have the magical ability to adapt. This is his 4 day wearing it and he's acting the same has the first...so I guess my life is ducked for the next 6 months
Posted on 8/30/15 at 10:40 am to tiggah1981
My boy had Plagiocephaly and we did the helmet for a few months... It seemed to help a little but it smelled bad and he sweated like crazy when wearing it. It took him about 2 days to get used to and and the dr gave us about a week long period of weening him on to the helmet. He was fine once he got used to it
This post was edited on 8/30/15 at 10:42 am
Posted on 8/30/15 at 11:45 am to tiggah1981
My nephew got used to it after a few days. It would still bother him but nothing like the first few days.
Posted on 8/30/15 at 12:04 pm to tiggah1981
EDIT - Just realized you had craniosynostosis in the OP. That's different than my situation.
This post was edited on 8/30/15 at 12:16 pm
Posted on 8/30/15 at 12:07 pm to StringedInstruments
I'm sorry. I'm a terrible person but kids in helmets made me think of this.
Posted on 8/30/15 at 12:11 pm to tiggah1981
quote:
his is his 4 day wearing it and he's acting the same has the first...so I guess my life is ducked for the next 6 months
Did the orthotics place not start you on a transition period? The first couple of weeks to a month should be the time you start acclimating him to it, an hour off and an hour on to start, and only during the day. This is the opportunity to closely examine his head for excess pressure (clear helmet, right?). Any spots on his head that are white while wearing the helmet need to be dealt with by the orthotics company (is it Hanger?). They can blow out tight spots and add padding to spots that irritate.
Sometimes, it's the taking off/putting on part that's most irritating, so the transition period might be the worst part of the whole ordeal. We lucked out, and my son took to the helmet pretty quickly and smoothly, but only after we'd eliminated all the points of irritation. The scalp is very sensitive. Even still, he cried every time we took it off or put it on, and occasionally developed rashes (luckily they didn't seem to be painful). There was a learning curve in maneuvering the helmet on and off smoothly without upsetting him.
Another thing you should do is keep your house COLD, and keep outside time to a minimum. Those helmets trap heat easily and immediately, despite the "ventilation" holes. When we drove to my parents' house in the middle of winter this year (9 hour drive), my son was still in the helmet, napping in the car, and suddenly started crying hysterically after a few hours. We pulled over, and he was drenched in sweat and the inside of the helmet was totally clouded with moisture, like a sauna. Had to take it off and keep the heater off to cool him off. Just always keep in mind that a comfortable temperature for you is probably too hot for him. I kept the thermostat at 68 at home.
We were told he had to wear his helmet for a year (starting in August of 2014, at 4 months old), which ended up being 10-11 ish months, because he'd reached the proper symmetry and cephalic index by May. By then, he'd also grown a lot of hair, making the helmet even less tolerable in the summer heat.
Good luck to you. It'll get easier, and then when he gets older and more aware of the thing on his head, it'll get more difficult again. Stick with it, and the helmet (and him having craniosynostosis all together) be a distant memory soon enough. Let me know if you have any other questions.
What kind of cranio did he have? My son's right lambdoid suture was closed.
Posted on 8/30/15 at 12:13 pm to UHTiger
Show him a Doonesbury strip.
Posted on 8/30/15 at 12:14 pm to StringedInstruments
quote:
You may want to investigate if it's really necessary. Not to be the conspiracy-guy, but a lot of what I read about helmets said that pediatrician offices get a kickback for selling them and there's no harm in giving helmets to kids that don't need them.
No. OP said this is a craniosynostosis helmet. It's a surgical helmet that is just as crucial to treatment as the surgery itself. It is not the same as plagiocephaly helmets.
Craniosynostosis helmet (to be worn post-surgery):
Plagiocephaly helmet (no surgery required):
The plagiocephaly helmet can have legitimate uses (it is sometimes used for craniosynostosis as well), but is also a well-known scam for mild plagiocephaly treatment, so much so that many insurance companies consider it cosmetic and won't cover them anymore. The craniosynostosis helmet, however, is considered necessary medical equipment.
For those who don't understand the distinction, craniosynostosis is a condition in which one or more of the joints in a baby's skull actually close prematurely, which can prevent normal brain growth. The solution is surgery (generally one of two options -- invasive restructuring without the need for a helmet after surgery, or far less invasive endoscopic surgery to simply open the suture, followed by helmet therapy to reshape the skull over time). Depending on which suture is closed, craniosynostosis can look exactly like plagiocephaly, the difference being that it's not correctable with non-surgical repositioning or the simple passage of time.
This post was edited on 8/30/15 at 1:33 pm
Posted on 8/30/15 at 12:16 pm to ILikeLSUToo
quote:
No. OP said this is a craniosynostosis helmet. It's a surgical helmet that is just as crucial to treatment as the surgery itself. It is not the same as plagiocephaly helmets.
Yeah I just realized that and edited as you commented.
Posted on 8/30/15 at 12:37 pm to ILikeLSUToo
quote:my son had this, wore the helmet from 6-9 months old,for 3 months.
Plagiocephaly helmet (no surgery required):
I guess I'll consider myself lucky after reading this thread. I stressed over it thinking he'd hate it, and I swear he literally never had one single moment where he had an issue with it while it was on.
That being said, I have no idea of the actual difference to the helmet and how it fits the kid for each diagnosis.
This post was edited on 8/30/15 at 12:38 pm
Posted on 8/30/15 at 12:37 pm to tiggah1981
This is one of the biggest scams in medicine
This post was edited on 8/30/15 at 12:39 pm
Posted on 8/30/15 at 12:59 pm to ILikeLSUToo
His metopic suture was closed. We started 1 hour on/ 1hour off the first day, 2 on/1off day 2, 4 on/1 off day 3, and 8 on/1 off today...he has to wear it tonight too. He is a sweater as well..my wife says his head will eventually cool itself off..just needs time to getting used to. I have a hard time believing that. The good thing he only has to wear it for 6 months...bad news is he's a stubborn one...I'm scared he's not going to sleep well at night.
The helmet itself is surprisingly heavy and doesn't feel as tight as it should, I don't know if it should be like that or not. I don't blame him for being pissed off...
Wouldn't feel so bad if he didn't have to wear it 23 hours a day
The helmet itself is surprisingly heavy and doesn't feel as tight as it should, I don't know if it should be like that or not. I don't blame him for being pissed off...
Wouldn't feel so bad if he didn't have to wear it 23 hours a day
This post was edited on 8/30/15 at 1:02 pm
Posted on 8/30/15 at 1:15 pm to tiggah1981
How is this kid gonna bone one of his high school teachers with that dorky helmet?
Posted on 8/30/15 at 1:21 pm to tiggah1981
quote:
He is a sweater as well..my wife says his head will eventually cool itself off..just needs time to getting used to. I have a hard time believing that.
Yeah, she's wrong. If you let him get overheated (i.e., the helmet clouds up like a sauna or he's sweating), the only solution is to take the helmet off for a little while to cool him off, get him dry, and try again. It's always going to be naturally hot under the helmet. Keeping him cool enough to tolerate it is key. Minimal loose clothing will let heat escape through parts of the body other than his head.
quote:
The helmet itself is surprisingly heavy and doesn't feel as tight as it should, I don't know if it should be like that or not.
It's going to be heavy for a baby. It caused a few gross motor delays in my son because his neck muscles had to work overtime to support his own head. Once the helmet therapy was done, his gross motor functions accelerated almost immediately.
I'm sure it's a little loose fitting, but that's the point. The helmet isn't there to reshape the bones by force. It's there to guide proper symmetrical and rounded growth. In the case of metopic, I'm guessing that the front sides of his head need to round out, so the helmet would be roomier in that area to accommodate growth, and maybe some padding in other areas to make it less roomy and promote growth where it's needed. They're also generally extra-loose at first because your kid's head is going to get bigger, and there's only so much in-house reshaping/blowing out the orthotics place can do to the helmet. My son needed a new helmet after four months. We probably could've waited another couple of months, but it was almost the end of the year and we'd long since met our deductible. Hopefully you'll only need the one.
This post was edited on 8/30/15 at 1:24 pm
Posted on 8/30/15 at 3:45 pm to tiggah1981
My daughter had plagiocephaly and wore a helmet for about 4 months. We drove once a week from BR to Dallas to go to a DOC band clinic. We felt it was a good decision, but the place seemed to have a very scammy feel to it. The band worked and they made adjustments every week. Once she outgrew it after 2 months they wanted us to remeasure and get another one. We told them no and they literally told us to leave no questions asked. We used Hanger in NO for the second helmet.
Cranio helmets are different than plagio helmets, but our daughter had no problems with hers. They do trap heat so be sure to keep her cool. We wiped the inside down with alcohol every night when she got a bath.
Cranio helmets are different than plagio helmets, but our daughter had no problems with hers. They do trap heat so be sure to keep her cool. We wiped the inside down with alcohol every night when she got a bath.
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