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#1 |
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Mom to Anessa and Abram
Join Date: Jun 2009
Location: WV
Age: 29
Posts: 54
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We got Abe's helmet last Wednesday and started putting it on him on Thursday, on an hour, off and hour. He ended up with a big red spot on the back by his occipital knob, anyways, I called the ortho and he said to take it off and leave it off (this was Friday). So we did and then took him back in on Monday. On Monday after having him wear it for a bit to see where it was red (only gets red when he's laying on it), marking it, then putting the helmet back on, then shaving part of it (the helmet..not his head) off, he was finally cleared to wear it again.
So Monday we started on an hour off, then now it's Thursday and he slept in it all night last night. He was up alteast 5-6 times (which is def. not normal, but I'm pretty sure it's to be expected right?!?) This morning when I removed the helmet to give him his one hour break, he had a HUGE red spot in the same place again. We were told that anything darker than a light pink that lasts longer than 20 mins to take it off and call them ASAP. I called over an hour ago and still no response. Is this normal girls????? I've rubbed the back spot and it doesn't seem to bother him. Mommy gut is telling me to just put it back on him, but I left it off for now and he's napping. What should I do? Thanks :-)
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![]() Alicia Anessa Corinne - 1-11-08 (no cranio) Abram Alexander 6-20-09-fused sagittal suture - CVR 9/21/09 with Drs. Horswell and Mazagri We're on the other side!!!!!![]() "How much of human life is lost in waiting"~Emerson
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#2 |
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Join Date: Mar 2009
Location: Columbia, Missouri
Age: 28
Posts: 2,581
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I would wait to here from your ortho first. Sophie regularly has spots where you can tell the helmet is tighter and they do last more than 20 minutes, but they are usually a light pink color. Anything darker than that I would leave the helmet off and call about. It could be they just don't have the fit right yet. Good luck, and if you don't hear from their office soon call back! It's their job to look out for you and Abram.
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Tessa mom to Sophie - Endo surgery 4/16/09 and Helmet Grad 12/21/09 - St. Louis Children's |
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#3 |
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Join Date: Feb 2009
Location: Atlanta GA
Posts: 2,812
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Tessa is right...it sounds liek they don't have a good fit yet. We had a similar issue with Avery's forehead and rubbing off the skin. Definitely call them back if you don't hear soon.
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Kelle Mom to Samuel Avery Born August 10, 2007 Right Lambdoid Cranio Complete bilateral cleft lip and palate Surgery at CHOA April 14, 2009
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#4 |
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Join Date: May 2009
Location: Ontario, Canada
Posts: 73
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Mark's helmet was really bad at first and not only did he get red sports, he got golf ball sized spots of swelling. I had to go back to the ortho multiple times the first few weeks but once we got a good fit, the spots went away. I would call back and have it adjusted again. Believe me, it does get much better!
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Melissa Mom to Quinn (April 8, 2009) Sagittal CVR surgery performed December 2, 2009 Mark (Jan 5, 2007) Plagiocephaly (helmet) and torticollis....doing great now! Jackson (October 9, 2002) Forever missing Olivia (October 14, 2000 - July 16, 2005) Forever missing Matthew (March 18, 1999 - July 17, 2005) |
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#5 |
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Join Date: Sep 2009
Location: Germantown, MD
Posts: 113
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Hope everything turned out ok. We had the same problem with my little girl. They shaved the inside of the helmet yesterday and now the bump is a light pink instead of angry red.
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Jean Mama to Jillian Alexis Born on 6/29/09 Diagnosed with Sagittal Craniosynostosis 9/14/09 Endoscopic surgery 9/28/09 Started helmet therapy 10/7/09 We are on the other side!
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#6 |
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Join Date: Nov 2009
Location: Omaha, NE
Age: 33
Posts: 1,106
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ARRGGHH red spots from hell....gotta love them... Sometimes it takes a little shaving to get the fit just right. Leigha had bossing on her right side of her head and one little screw that the band sat on wrong. We had the red spot after an hour on hour off ordeal had it shaved then did on and off and it was red and warm back again to ortho for shaving. When we made through the night after no red for a couple of hours woke up to a sore on her head. Well off went the band for two weeks while the sore healed....they shaved down the specific spot then built put something like a bunion cusion back on to push on the bossing but not the screw. Thank God that worked. The bossing improved and that damn screw finally absorbed as she got older. Keep working with the Ortho it will work out okay and yes jean pink is good....angry red SUCKS!
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Mel ~ Beyond A Glimpse Mommy of Austen 12/21/96: ADHD~normocephaly Leigha 7/22/00: Bicoronal Cranio~CVR with FOA May 2001~DOC band graduate Sept. 2001 Fought insurance & won on 4th appeal~2nd reconstruction summer 2011 w/Dr. Fearon Colton 3/24/09 normocephaly OUR Story |
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