Experience with Plagiocephaly and Orthotic Helmet

when I would wash my son's helmut I would let it air dry and coat it with baby powder before putting it back on. It helped a ton with the rash! Plus he just had really sensitive skin and eczema too, so you might want to see if an eczema cream helps if it doesn't get better.

My son had a helmet, but it was through Cranial Technologies. We are extremely happy with the results. He actually had to use 2 helmets...grew out of the first one and then we decided to go with the second because he still had room for improvement. The first few days were rough, he had some iritated spots but they went away within a 1/2 hour of taking it off. I'm not sure if you have the same kind, but it is very important to let their heads "breathe" for the hour a day...and in that hour you need to wash their head with baby shampoo and we had to clean the helmet every day with alcohol and let the helmet dry. We were also advised to not use any type of lotions on his head. If you haven't done so already, I would contact the therapist for the helmet and take your boy in asap, we were advised to call immediately if we ever saw something that didn't look right. Hang in there, my son was in it for a total of 6 months...it gets old....it's extra work for the parents, but it's totally worth it!!! My sons head looks great! Good luck!

My son had a helmet but we did not experience much of a rash. His head turned out great. We did end treatment a couple weeks before we should have and that is my only regret. There is just a little spot that might have come out more.

My son had torticollis and physical therapy was huge for him. You would not even beleive how much torticollis effects their whole body from the way they crawl, walk etc. He still has a little tilt in his neck when he is tired and he is 3 now.

I think we as parents experience the most discomfort. My son did not even know it was there. I am the one that was needless worried all the time. I am very glad we did the treatment. Good luck it is all worth it!

We did the whole helmet thing. I'm not sure what an Orthotic Star Band helmet is--ours was custom made at Primary Children's Hospital, but I'm sure it's similar. We had the fabricator drill some ventilation holes in the helmet and that seemed to help clear up the rash. Make sure you wash his head (maybe twice a day) with something gentle.

Good luck--our helmet worked out great! As for the torticollis, get physical therapy sooner rather than later or you won't have a chance to correct it. If it goes on too long, your little guy's horizon line will shift and his vision will be permanently affected.

www.thosecrazybeans.blogspot.com

My son had a helmet as well. Try some baby powder or cornstarch around the red area. That always helped for us. The rash should go away on it's own. Try to dress him lighter so he won't be so hot as well.

My daughter had the helmut at 4 months old. She had a severe case of plagiocephaly and torticollis. She wore the helmut for about 4 months and it made a world of difference! As for the thereapy, that was all done at home by anyone who was caring for her (myself,husband or grandma). Everytime we changed her diaper we would do therapy. We were lucky enough to not have a rash but her head would get red in certain spots. The technician would just shave a little off the helmut to adjust. Cranial Technologies was a great place to go. Very friendly and professional. Good Luck.

The helmet may need to be adjusted some, in the begining the rash is pretty common. Give them a call and they will help you out. My son wore a helmet for about 3 months for just the flat head no torticollis, would do it again in a heartbeat! Best of luck.

My cousin has a son with craniosynostosis. She recommends this website http://www.cappskids.org/ as a support and resource for parents.

There is a support board link where you can post questions specifically for this topic.

Best of luck!

J.,
You might want to get the opinion of a chiropractor that works with children. Dr. Sean Manning is in Oak Park, and worked miracles on my son when he was born. He did not have torticollis, but he tended to favor his right side and his head often "fell" that way. We saw him several times a week and through cranial-sacral therapy, we were able to correct his "lean". It wouldn't hurt to call and talk to Dr. Manning. His website is www.welladjustedworld.com. He is truly amazing, and he is a fellow of the International Chiropractic Pediatric Association. His methods are very gentle (not the adjustments adults get), and he is such a great resource. I had asked him once what he thought of helmets, and he said he felt that they forced the body into a different position, and worked against it, where a lot of what he does is work WITH the body to achieve balance.

Maybe he can help you find another chiropractor in your area that can do the same thing but is closer.

I hope that helps!

T.
www.ReadandGrow.com

My four year old wore two STARband for 8 months (starting around 8 months) via Dr. Vicari and Children's Memorial. I cried like a baby the night before he got it, but cried even more when we had to get rid of it. We definitely saw HUGE IMPROVEMENTS with the shape of his head, as well as the symmetry of his features (if you look at pictures of him around 6 months, you can actually see how his eyes are not aligned).

He also had torticollis and we worked with a PT from 6 weeks until almost 3 years. You cannot notice a tilt at all now unless he's sick (and then, I'm the only one who can see it). I would definitely stick with stretches, homework, etc - anything your PT or OT suggests. We were very good about doing everything, but since his tort was so strong (he had negative range of motion when we started) and lasted for so long, we have had to deal with residual eye issues (strabismus, lazy eye, glasses since 2 1/2 and possible eye surgery).

Chase never developed a rash on his head - surprising since he has horrible eczema - but I would second whoever suggested dressing him in cooler clothes. He wore short sleeved shirts and jammies all winter long since his head would really be sweaty. I'd call your orthotist and ask their thoughts about the fit of the helmet.

Good luck! Hang in there.

Hi J.,

My son had to wear the helmet as well and did a little bit of therpy. We did most of the therpy at home because we did not like the people we were working with. Anyway, we took things in our own hands. He wore the helmet for about 4 months and got out of it early because he was going through a growth spurt and out grew the helmet. They could not do any more with it. He only wore the helmet for about 18 hours a day, even though they said 23 hours. When we took off the "hat" then we wiped his head down with a cool wash cloth.

Sometimes he didn't want to wear it so we just waited for about 15 minutes and then there were no problems. We had a few red marks on his forehead, but those went away, within 15 minutes.

Good luck.
L.

4 years ago my son also wore a star band from Children's Memorial. He started at 5 months old and had it for four months. Great improvements. He also had torticollis, which was resolved due to weekly (sometimes twice a week) physical therapy at Easter Seals DuPage for six months.

It is not a big deal to keep the helmet off if his rash is really bad until you see the practitioner so that you can get the helmet adjusted. But if it's not that bad I would keep it on if your son doesn't seem really uncomfortable. I do remember my son had some rashes with it, but overall, I don't even think he noticed that he had it on.

Good luck!

Have you thought about taking your little guy to a chiropractor? Our baby's skull plates were stuck under one another and he did a great job fixing it. Let me know if you need a referral.