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Thread: Helmet after a year?

  1. #1
    kfa329 kfa329's Avatar
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    Default Helmet after a year?

    Did anyone find that their child's head shape regressed after they were done with helmet therapy, especially if they were done before they were 12 months old?

    Also if your child did wear a helmet after they were a year old, do you think that the final months were beneficial for improving or maintaining their head shape? Did you find the extra time worth it?

    Thanks for your help!
    Kelli
    Wife of Mike (right coronal, no surgery)
    Proud mommy of:
    Shannon Emily (cleft palate (Pierre Robin Sequence), no cranio) born 12/5/07
    Lydia Lilianna (bicoronal cranio) born 10/22/09
    Endoscopic strip craniectomy, Dr. Jimenez and Dr. Barone, San Antonio, TX on 1/14/10
    Helmet Therapy 1/20/10 - 4-22-11

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    CalinaLily CalinaLily's Avatar
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    I'd be interested in what anyone has to say about this... we opted to quit when she was 12.5 months old, despite the fact that she didn't attain the perfect "ratio" -- her head's still a little on the long side, but we chose to stop because our surgeons were happy enough with the outcome, and she was starting to become really aware of the helmet as part of her head... She was fighting us more when we put it on, loved having it off, and... we live in Florida and it is starting to get REALLY hot again. I couldn't see putting her through more than was necessary. We're only a couple weeks out, and the more I look at her head, the more I just hope to goodness it doesn't "regress" too much -- her head looks good, but not good enough to go backwards, ya know?

    I'm probably just hyper sensitive, though. :)
    Melanie
    • Calina Lily born 3/19/09 Sagittal Synostosis - diagnosed at birth
    • Endoscopic surgery with Dr. Johnson & Dr. Ruiz 6/17/09
    • StarLight helmet therapy with Star Cranial started 7/13/09 & graduated 4/5/10
    My Mommy Blog - including our cranio journey

    Before and After surgery photos

  3. #3
    Alex's mama *jules* is on a distinguished road *jules*'s Avatar
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    I have no helmet experience, but I'm sure some of our helmet mamas will chime in soon :)
    Julie
    mom of two boys
    Zachary Joseph Marquez 9/4/02 - no cranio
    Alexander Michael Marquez 9/2/08 - metopic cranio
    surgery 5/15/09 with Dr. Fearon & Dr. Sacco

    http://www.caringbridge.org/visit/alexmarquez

  4. #4
    kfa329 kfa329's Avatar
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    Thanks for your honesty, Melanie. I'm also concerned about the heat (when we go back to Brazil in June) and I'm wondering how much we'll be able to keep it on because we don't really even have air conditioning.

    What was Calina Lily's ratio when you stopped using the helmet? Actually this might be a good question for everyone! I'd love to hear!

    Lydia is 6 months old and is at 84% now, down from 91% three months ago. Anyone else want to chime in?
    Kelli
    Wife of Mike (right coronal, no surgery)
    Proud mommy of:
    Shannon Emily (cleft palate (Pierre Robin Sequence), no cranio) born 12/5/07
    Lydia Lilianna (bicoronal cranio) born 10/22/09
    Endoscopic strip craniectomy, Dr. Jimenez and Dr. Barone, San Antonio, TX on 1/14/10
    Helmet Therapy 1/20/10 - 4-22-11

  5. #5
    CalinaLily CalinaLily's Avatar
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    We started at 64% (long and narrow) and made it UP to 79%. They were aiming for high 80%'s, I think, to accommodate for the "big R".
    Melanie
    • Calina Lily born 3/19/09 Sagittal Synostosis - diagnosed at birth
    • Endoscopic surgery with Dr. Johnson & Dr. Ruiz 6/17/09
    • StarLight helmet therapy with Star Cranial started 7/13/09 & graduated 4/5/10
    My Mommy Blog - including our cranio journey

    Before and After surgery photos

  6. #6
    JillysMama is just starting out JillysMama's Avatar
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    Hi ladies! I'd be curious to know the answers to your questions myself. My daughter is 10 months and about 84%. The orthotist and NS keep telling us she should only be in it for 2 more months. They've both said that she will likely regress a little after having it taken off which is why they are overcorrecting. I guess a "normal" head is 80% so anything over that is bonus. They said she'll probably regress down to an 80%. This is all speculation of course and I don't really know what's going to happen. Maybe you should PM Sophie's mom or Calina's mom since both of them recently finished up with the helmet. Let me know if you'd like me to find them on here. They usually chime in.
    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!

  7. #7
    JillysMama is just starting out JillysMama's Avatar
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    HA! I just realized Calina's mom is already on here! I didn't recognize the little beauty without her helmet. Hi Melanie!
    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!

  8. #8
    Mena Mena's Avatar
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    my daughter audrey was diagnosed with saggital at birth and had a strip craniectomy with barrel staves when she was three months old. she also wore a helmet for four months. we are so incredibly happy with her results! when the helmet first came off i was terrified that her head would regress but the neurosurgeon and orthotist kept reassuring me that her head would continue to round itself out as she grew. i've watched her head like a hawk since then and we're now 16 months post-op and almost a year post-helmet and her head looks awesome! thankfully it has not regressed and it has actually continued to round itself out.
    my orthotist did actually recommend one more month.....just to be safe....but we were heading into the summer and i couldn't imagine how hot she would be in the helmet....so my husband and i made the decision to stop when the ns suggested it.
    Mena
    Mommy to Audrey (10-06-08)
    sagittal synostosis (surgery 01-08-09)
    "on the other side"

  9. #9
    Sophia's_mom is on a distinguished road Sophia's_mom's Avatar
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    We were aiming for the mid 80's and I think we had just hit the 80% mark when she was 12 months. I couldn't take it any longer and we took the helmet off. Sophie was alos very aware of the helmet and was starting to fight having it put on. We've been helmet free for a little over 4 months and I have only noted positive growth. I have seen her forehead widen out and her head shape continue to improve. We have not had our one-year follow up with her surgeons yet (that's coming up in 2 weeks) but I am very hopeful that they will see what I see and nothing else.
    Tessa - mom to Sophie and Ben
    Little Miss Sophie - 12/22/08 - Sagittal - Endo surgery 4/16/09 @ St. Louis Childrens
    Baby Boy Ben - 12/14/11 - No Cranio!

  10. #10
    CalinaLily CalinaLily's Avatar
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    Hi Jean. ;-)

    Man, Tessa, sounds like we were in exactly the same boat... Calina started becoming hyper-aware of her helmet around 11 months old, and really hated when we had to put it back on after her break time. It's one thing when you know they just don't know or care, but... She learned what her "helmie" was, and would smack her head when you asked her where it was. That was just too hard!

    We also have a followup with our surgeons in the next 2 weeks, and, fingers crossed, they'll be as happy as we are with the results.

    We're only a month in to helmet-free time, and I can't say I've noticed any growth to speak of either positive or negative!
    Melanie
    • Calina Lily born 3/19/09 Sagittal Synostosis - diagnosed at birth
    • Endoscopic surgery with Dr. Johnson & Dr. Ruiz 6/17/09
    • StarLight helmet therapy with Star Cranial started 7/13/09 & graduated 4/5/10
    My Mommy Blog - including our cranio journey

    Before and After surgery photos

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