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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.
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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.
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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!
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COMMENTS ( 1 )
posted on 14 August at 16:43
Thank you for posting your story. I just made my apointment with the same people you used. Im nervouse, i feel guilty for not going with my gut when i noticed it months ago. He is now 4 months old so its not too bad but still ... ughgh your story made me feel better.
Thank you Maritza