I really need some advice...

[Tyler's Mom]

I am lost. Tyler had his metopic surgery May 3. He is now 12 weeks old and has yet to get into his helmet full time. I see a lot of you have had your kids on a 10- 12 day schedule to get them used to it. I also have heard some parents did not stick to the 23 hour schedule.

Tyler's fitting has been a nightmare from the beginning and now I am at my wits end. My husband took him on Tuesday to get it adjusted - yet again - and after wearing the helmet for a couple of hours, it didn't seem to have the effect it had today. We put him in it today and our intention was to stick it out a couple of hours again. But he barely lasted an hour. He was screaming. We took it off and there was this horrible mark on his forehead from the pad they put in it to protect his operative area. His scab and stitches are still firmly in place. I have been using the peroxide/water therapy to try to loosen the scab but it's holding on tight.

How do you know what's normal and not normal with these helmets? How do you know what hurts and what doesn't? I am afraid that certain things are causing him pain - and if that's the case and it's not being addresses, he will never get used to it and we will have a miserable baby for the next 8-10 months. And who knows how that will effect him later on.

I just don't know what to do to ensure I am doing the right thing, that his helmet fits properly.

I am ready to give up and start over somewhere else!

HELP!!!!!!!!!!!!!!!!!!!!!

[jjmc123]

Last month, user mammamia was posting something similar to what you wrote. You should look up her threads on helmets. My son didn't wear a helmet so I cannot give you 1st hand advice on what will work. I have read that what helps a lot is the attitude of the parent's. If you look at the experience positively, the baby will pick up on the vibes. It also seems that most babies do adjust just fine to the helmet. There is the transition stage, but after that it is okay. Hopefully other helmet moms will chime in.

[Zara's mum]

:hugg I'm so sorry you're having such trouble - I have no experience with helmets but I really hope someone chimes in soon xxx

[JillysMama]

I'm so sorry you are having such a hard time! My daughter HATED the helmet for weeks. It took us a very long time to adjust. Definitely keep going back for adjustments if the helmet is causing red spots.

One thing I wanted to say is that I don't think you should be trying to take off the scab. It's also not usually recommended to use Hydrogen Peroxide on cuts anymore. This is the old way of thinking by doctors and not the current recommendations. Hydrogen Peroxide disturbs the normal flora of skin bacteria that is used to promote the healing of skin. The scar is a natural bandaid that is serving several purposes (protect the incision from bacteria, friction, etc.). Hydrogen Peroxide is good to use during an initial cleaning, but then that's all. After the initial cleaning it should not be used because it can delay healing.

I hope things start turning around for you guys. You are an amazing Mom and doing all the right things for your little one. Hang in there!

[Sophia's_mom]

I wish I could offer more support, it really is a waiting game getting them used to the helmet. Luckily for us it didn't take Sophie too long to adjust. I'm so sorry Tyler is having a tough time!

I will say keep taking him back for fittings if the helmet is causing red spots that don't go away within 20-30 minutes of taking the helmet off. If they cannot get the helmet fitted correctly, I would contact your surgeon for more options.

[Tyler's Mom]

Thanks for your input, Jean. The neurosurgeon is the one who told me to dab the scab with a 1-1 peroxide/water solution three times a day. It just doesn't seem to be doing anything. The indentation it caused yesterday was just more than a red spot, it was the actual mark of the pad. I can not imagine him wearing that 23 hours a day like that and not coming out of it with a permanent mark!

I have a call into him today and am waiting to hear back. This whole thing is upsetting me because if he is in any pain rather than discomfort, he will never get used to the helmet and we will be in for a long 8-10 months.

You are all wonderful... thanks for the replies!

[Carmen77]

I'm so sorry he's having such a rough time!! :hugg

My 6 mth old just got his scan for his helmet, he doesnt have cranio. So i dont have to worry about an incision, but I am worried he's going to hate it! :ugh

Good Luck! :heartbeat

[Tyler's Mom]

Carmen, keep me posted on your progress. And email me any time. I have been reading some of the older posts about the length of wearing the helmet and I feel a little encouraged. It's just a matter of getting him in it that we are having a problem with. So tomorrow I will go for another fitting with him and work on it over the weekend. Hopefully by the end of next week we can get him in it full time.

Good luck!!!

[Carmen77]

Carmen, keep me posted on your progress. And email me any time. I have been reading some of the older posts about the length of wearing the helmet and I feel a little encouraged. It's just a matter of getting him in it that we are having a problem with. So tomorrow I will go for another fitting with him and work on it over the weekend. Hopefully by the end of next week we can get him in it full time.

Good luck!!!

Thank you!! :heartbeat Hoping Tyler gets used to it soon! :hugg

[G2sMama]

Our helmet gal always told us that if the red spot didn't go away within the one-hour-off allotted, then we needed to get it refitted. And if there's an indent, you definitely need to get it refitted. Please don't feel bad about taking him back over and over again. That's what your money goes for. The structural integrity of his head lies in the balance, and it's your right to get it fitted correctly. We went every third day or so for the first several weeks.

And while it's miserable to listen to them cry while getting used to the helmet, I had to just think of it as handling it the way I did with getting rid of the pacifier or making the Gs learn how to fall asleep on their own. It's for their own good, and it must be done. :hugg It's not easy. I won't tell you it is. But you'll be glad down the road.

[Grayson's Mommy]

So sorry you're going through this. Our Orthotist told us if the mark doesn't go away within an hour not to put the helmet back on him until we were able to get in for a fitting. Don't worry it definately does get better.

I've grown to love the helmet and I think I may be sad when we are done. We see the N/S again on June 13th and I'm pretty sure we will be finished with it then. Grayson's head is looking amazing and it's only been 6 months.

I will say for us we found it easier to keep the helmet on his all the time because he would go crazy scratching his head whenever we take it off. He has it off only to get his bath or go for a swim now.

Good luck!