The Story Of My Son’s DOC Band

When my son was 8 months old we were referred to this place called Cranial Technologies because the back of his head was getting flat.  Let me give you a little background on the first 8 months and then some of his life.  My son was born via c-section because he was breech.  He came out and I remember he had the roundest little baseball head.  That was how I remember thinking of his head.  Like it was a perfect little baseball.

The first 6 months of his life ended up being a roller coaster of not gaining weight or only gaining a little.  We went to many doctor’s appointments to check his weight.  At one point we had to go for a cranial ultrasound because they thought his head grew too fast.  Then we spent five days in the hospital with him when he was 3 months old where he was diagnosed as failure to thrive.

All of this caused him to have some gross motor delays where he wasn’t sitting up until he was 8 months old.  When he was 6 months old we started getting things on the right track.  A new doctor, Birth to Three, and the realization that his head had slowly been becoming flat in the back.  Tummy time with him was sheer torture which we never realized that because he had severe acid reflux it was causing him so much discomfort.  He spent a lot of time being held in my arms which resulted in a spot on the back of his head which fit perfectly into the curve of my arm.

July 2008 An Introduction To Cranial Technologies

Our doctor sent us to the best place in the area for reshaping infant’s heads.  They worked with us and our insurance company to get his treatment plan in line.  And the end of July/beginning of August he got his first DOC Band.  We followed the wearing instructions of keep it on for 23 hours a day.  He was only out of it for an hour for bathing and changing.  And it was a hot hot summer and he sweat, but he never seemed to mind the helmet.

We Never Could Have Anticipated What Happened

It wasn’t long after we started the full time wearing that he developed a rash on his head.

Every time we put the helmet on him the rash would show up.  It would take days for it to go away and a matter of hours for it to reappear.  It was a constant battle.  Cranial Technologies did not believe he was allergic to the helmet because it was always on the same spot of his head, not his whole head.

They thought it was from sweat and we ended up going back weekly for them to evaluate the situation.  All of this went on for about six weeks before they finally put some moleskin on the inside of the helmet which helped tremendously.  The rash went away and never came back after that.  But all that critical time spent out of the helmet had an affect on him.

Need For A 2nd Helmet

As the original time frame of wearing the helmet was drawing near I had so much hope that he would be discharged in time for his first birthday.  However, a few weeks prior I was told he will need a 2nd helmet.  He was now going to be in it a total of 6 months instead of 3 months.  I worried about the return of the rash and asked if we would have it fitted with moleskin right away.  They told me no that wouldn’t be necessary.  If he developed a rash again then we’ll just put the moleskin in then.

We had to do imaging again for them to craft the 2nd helmet and went from November until the end of February 2009 in the helmet.  I was so relieved when he finally graduated from the helmet.  To show you what the treatment did for him here are the treatment images.

So as you can see he was first evaluated in the beginning of July 2008, then had to get measured for a new helmet in the beginning of November 2008 and finally out of helmet the end of February 2009.  You can see how the symmetry of his ears changed and the front of his forehead was much more protruding than what we ended up with.  Just much more symmetrical all around.  Now that he’s 4 years old I look at his little baseball head and think it sure has come a long way since he was born and I held him in my arms in the hospital.  While we went through it I was petrified of how he would react to it and how others would feel, but if I had to do it all over again I absolutely would.  Because even with all of the ups and downs his head is so much better than it would have been and now aside from what seems like an abnormally large head to me at times we can get him hats and bike helmets to fit properly.  Had we not done this and stuck it out for the full course of treatment who knows what would have happened.

What Treatment Was Like

So for anyone who is about to start this process let me tell you what will happen.  You will go in and they will take photos like you see above in many different positions.  They’ll do some measurements on his head and then tell you if you need a helmet or not.  They will schedule you for another appointment where they will then get a mold of his head.  Thankfully they had just stopped doing the messy casting process by the time we started and had moved onto some digital technology.  They put a stocking over his head and sat him in a chair and took images of his head from all around.

It was quick and painless.  A few weeks later the helmet was made.  We went in and they told us what our wearing schedule was.  At first you’ll have to ease into it, but eventually it will be worn 23 hours a day.  It will have to be scrubbed everyday with a dry wash cloth and some rubbing alcohol.  This is what we had to do, but listen to what your caretaker tells you to do with your helmet.

Appointments were every other week when we weren’t dealing with the rash.  When he had the rash we were going every week.  We couldn’t go longer than the two weeks because they needed to make adjustments to the helmet because of the fast rate in which the head grows.  Again, this schedule will be worked out with your care provider, but it likely won’t be more than every 2 weeks.  If you let it go too long, then you will have the wrong pressure points on your head.  So try not to miss your appointment schedule.

My son never seemed to mind the helmet being on him.  Even though he sweat a lot while in it when we first started with it because it was summer he did fine in it.  Aside from that rash he had wearing the helmet was never much of a problem.  People were curious and would make a bee line for me in the grocery store to ask about it, but most people were really just curious.  And my son doesn’t even remember the helmet.  We have 2 helmets left as momentos for him and two very nice home defense heads.  They gave us the mold of his head from both helmets that they used to compare his head progress to at each visit.  They are hard and heavy and on a stick and I have no idea what to do with them other than to give them to him when he gets older.  It was a learning experience and I was happy when it was over, but relieved that we did it.

And so far 3 years after discharge he has no ill effects from wearing the helmet.  As a matter of fact no one would be any the wiser that he ever needed a helmet 3 1/2 years ago.

Typical 4 year old, dirty face and tattooed himself green!

Such a handsome little man.  No matter what he would be handsome, but getting him the treatment he needed when he needed it made for a better quality of life for him.
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Comments

  1. What an incredible journey! I don't have children, so truly I will never know what it's like to go through everything that you and your family have been through in this process until I have little ones of my own and know the stresses of a child not developing how they should. I can imagine it would be frustrating and stressful for you as a parent, but look at your handsome boy now!! You would never be able to tell he'd worn that helmet so often in his younger years! The helmet made such a difference, it really is incredible what the right treatment can do. Thankyou for sharing this story! I wouldn't have even been aware that things like this can happen.

  2.  It has become more common since the back to sleep campaign started.  I'm glad there was something out there to help him though.  And the only memory he'll ever have of any of this is what we tell him and the pictures. 

  3. Ashley Pomykala says:

    I really enjoyed reading this.  I studied baby helmets in school when I was going for orthotic and prosthetic technology.  Baby Helmets have a lot more rules and regulations that go with them because they are on the head.  The FDA mandates a bunch of other things to make sure they are 100% safe.  I am sorry that your doctor wouldn't listen about the rash.  I know some doctors get that way.  I have always altered my orthotics and leg braces on my own if I need to though the doctor would suggest you don't do that.

  4. Hi! I just stumbled upon your blog by googling “DOC Band Allergy” as my daughter is having a really hard time with her band. She’s had it just over 4 weeks and just got it back on after being out of it for a week due to a horrible rash all over her head. After racking our brains, our pediatrician believes the rash is due to the DOC band…nothing else has changed. It took over a week for the rash to go away with the help of a prescribed ointment. Our therapist administering the band indicated that she’s never heard of a child being allergic to the band, and has never seen a child have this kind of reaction.

    Did your boy have issues during the initial skin checks in the band? Our daughter did not, and the rash didn’t start to appear until she was about 3 weeks in with treatment. I may ask for the moleskin at our appointment on Monday if you feel that really seemed to help. I just don’t want to end up needing a 2nd helmet due to her not being able to wear it as much because of this. (The good news is that it has already helped tremendously, so worst case scenario she can’t wear it anymore and it’s done some good. But, to think of how much we paid for it and how much more it could do if she is able to continue wearing it makes us want her to be able to complete treatment.) Anyway, thanks!

    • Sierra,
      Sorry your daughter is having such a hard time with her doc band. No, my son was fine with the band when we first put it on him. It wasn’t until about a month in that he started developing that rash. They said I wasn’t cleaning it out well enough. It was in the summer and he was very sweaty in it which I suppose could have contributed because we didn’t have a problem with the 2nd band at all. He never needed the moleskin. I recommend you pushing for some sort of barrier though even if they tell you they’ve never seen this before. I experienced the same thing, I asked for a barrier and they said they couldn’t do it initially, but after constant rechecks of his rash they finally caved and used the moleskin. I don’t know, maybe they had to find out what they would use. He only had one spot where it rubbed up against his head the most that needed to have the moleskin on it. I don’t know if your daughter has a rash on her whole head, but either way they should be able to put a piece of moleskin in there as a barrier. I do hope they agree and it helps your daughter. We probably could have stopped with the one helmet for my son, but I am very happy he had the 2nd one. His head is probably the roundest of all of my kids actually. I do still notice a spot where it’s a little flat, but no one’s head is perfectly round and no one has ever said anything about it. He’s 6 years old now and his head looks great.

Trackbacks

  1. [...] delays. He began birth to three and then when he was 8 months old he began treatment with a cranial helmet to reshape his head. Two helmets and six months later we were cleared from that and then by the [...]

  2. [...] he can fly or anything.  Most of his accidents seem to include his head.  Makes me miss his helmet days.  Although, sometimes I wonder if the helmet has somehow caused his problems.  Almost like he [...]

  3. […] my son’s health struggles differently than I did possibly saving him from 6 months in a Doc Band and over a year receiving physical therapy to help develop his gross motor […]

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