Helmet Therapy Frustration

[K's mommy]

Hi All,

Has anyone experienced a delay getting your child in their helmet full time after surgery? My son had his surgery 6/15/11 and we keep running into fit issues with the helmet being too tight. I am going to call the surgeon Monday to discuss further but I am thinking this is abnormal on the Orthodists end. Any experience with this? Thanks!

[Carmen77]

I'm sorry your having a hard time with the helmet! It shouldn't be fitting tight at all, have you taken him see the surgeons?

Good luck!

[*jules*]

no helmet experience here either, but I'm sorry you're having to deal with this right now. I think I would contact the surgeon and let him know. I have no idea if there's a specific window of time that the helmet needs to on the head post-op but I imagine the sooner the better. I wonder what the problem is...have they told you why they keep messing up on the fit? Also are they making a mold of the head or using digital imaging?

[K's mommy]

They did use digital imaging. First the Orthodist was on vacation so we waited another week. When we saw the Orthodist he said Kieran was not ready for the helmet. Kieran screamed up a storm. Now this coming visit will be the 2nd visit for adjustments. We saw the Surgeon 2 weeks post op and he said all was well wanted to see Kieran again in a month. At that point he knew we were to receive the helmet the following week. No reason as to why they need to continue to adjust the helmet except that this happens sometimes.

Thank you for the recommendation to contact the surgeon! I will do that tomorrow. All I think hear is the surgeon saying get him into the helmet as soon as possible.

[G2sMama]

I'm sorry you are dealing with this. Looking at the pic of your little one in his helmet.... seems they maybe made it too small. In my experience, the helmet is always a tad big to start and they have to add foam to hold it in place. Then as the head grows, they remove the foam so there's room to grow. Definitely call the surgeon tomorrow. And for what it's worth, it IS possible that his little head may just be growing really fast right now. Our first two helmets only lasted 6 and 8 weeks, when they should have lasted closer to 12 weeks. Please let us know what they say....

[Carmen77]

My baby is in a helmet to correct his plagio, and he gets his helmet fitted every 2 weeks, its very common to have fittings because there heads grow quickly!

Good luck, with the surgeon appt!

[jjmc123]

:hugg sorry you're having these issues.

[JoesMami]

My son also has a helmet for plagio ( he just got it) But we have to go back every week for the first few weeks then after that it will be every 2 weeks. His helmet is loose on one side and tight on the other( if that makes sense). I know for us they have to keep checking for pressure marks on his skin which would mean that they need to remove some of the foam in certain spots. Which brand of helmet are you guys using?

[Carmen77]

My son also has a helmet for plagio ( he just got it) But we have to go back every week for the first few weeks then after that it will be every 2 weeks. His helmet is loose on one side and tight on the other( if that makes sense). I know for us they have to keep checking for pressure marks on his skin which would mean that they need to remove some of the foam in certain spots. Which brand of helmet are you guys using?

Lucas is in a Hanget helmet! This journey has not been fun, he's been out of it longer than it it! This weekend it left the worse red marks on his sides, took him in yesterday and the did some adjustments but told me not to put it back on until the redness is gone.. its been 48 hrs that's crazy! :rant

[Carmen77]

How did your appt go yesterday?

[BabyGabey]

Sorry your having so many issues!! I know my son's helmet definitely started off bigger so he would have room to grow and the friction from the foam is causing him to loose his hair around his ears. He is in a Starlight helmet and I have to say we have not had any problems yet. But we do go once a week for fittings. Maybe you need to find a new orthotist?? I have to drive 2 hours for Gabe's but another cranio mommy recommended her and she has been well worth the drive. Good Luck!!

[dadofdan]

It sounds abnormal to me. Our son was fitted a day after surgery and received the helmet the day after that. We are doing our helmet with Hanger. Maybe it depends on the place.

[JillysMama]

I'm sorry you are having so many problems. My daughter was a sagittal baby and had the endoscopic surgery as well. We got her helmet about 2 weeks after surgery. Different people have different experiences on this site and there seems to be a lot of variability. When we got our first helmet her incisions weren't quite healed all the way. Within a few days of a sweaty head her incisions had a little bit of pus. So we had to take her helmet off more than we expected to let them heal properly. It was a minor set back, but they were soon healed and we were in the helmet on a regular schedule within a couple weeks.

I also remember that her first helmet was a bit too small on her. It even squished in her left eye a bit and I was concerned about it. They kept telling me it was normal and it was supposed to be like that. So the helmet definitely shifted and shaped her head and did a decent job. But I was never that comfortable with it and I kept asking a million questions and it never did feel 100% right.

Anyway, about 8-10 weeks later it was time for the next helmet. The next helmet fit her perfectly! It was nice and big with lots of padding to help mold her head, it didn't squish her eye, and I could tell it was just right for her head. Again, the helmet molded and shaped her just the way it was supposed to. Our third (and last) helmet was not nearly as good as helmet #2, but it was good enough.

At the end of the therapy her head really looked fantastic. There is no sign whatsoever that she had cranio surgery or sagittal. We are almost 2 years post op and her cephalic ratio is 78! There isn't any bogging and her facial features are nice and even despite the 10 weeks of squishing in her left eye. The reassuring thing (and the reason I blabbed on and on) is that these babies heads mold so easily that once they get it right they will be able to fix any problems or set backs. Keep advocating for your son and bug them till they get it right.

[K's mommy]

We were back at the Orthodist last week and today for adjustments. It turns out my son does not have much time in the helmet as he is growing leaps and bounds. The good news is his head looks good. I did take pictures of his head and e-mail it to the surgeon for his opinion. He does not seem too concerned with my son not wearing the helmet (the helmet was made by Becker labs) as much as how we think his head looks. So we will try to use what we can of the helmet until he out grows it. I guess the downside to a healthy growing child:)

Thank you all for your support and recommendations!!!! You truly helped me get through a difficult week!!