Just as the skin sloughs off on areas of your body that you can see, it also sheds where you cannot see - like inside the ear. For people with ichthyosis, who shed more than the normal amount of skin, the skin inside the ear canal can combine with wax and form a solid material. This solid material may be itchy and uncomfortable for your child. It may have an odor and may even cause a reduction in hearing. Never attempt to remove this solid material yourself and never stick anything in your or your child’s ears; this can puncture the eardrum and cause hearing loss. Have your child’s hearing checked regularly, and discuss ways to keep the ear clean and free from skin shed build-up.  Most patients with ARCI in particular should be evaluated by an Ears, Nose and Throat (ENT) specialist. Many patients need regular clean-outs by ENT to help with buildup of scale.

Some of our members have submitted tips and suggestions regarding products and strategies that work for them. Please check with your doctor before using any of these products:

Our ophthalmologist recommended Lacrilube which is like sterilized Vaseline for around the eyes to reduce risk of infection.” – FIRST Parent, Meghan Knabe

  • Bausch & Lomb Ear Wax Remover Kit. Carbamide Peroxide solution to soften earwax and a bulb syringe to irrigate the ear canal. Available in local pharmacies and drug stores.
  • Liquid Colace, a mild stool softener, can be as effective as earwax remover products. Reference: Ceruminolytic effects of docusate sodium: A randomized, controlled clinical trial. Singer, AJ, Sauris, E., and Viccellio, AW. Annals of Emergency Medicine 2000; 36:228-32.
  • Debrox Drops, Ear Wax Removal Aid. 6.5% Carbamide Peroxide drops. Available in local pharmacies and drug stores.
  • Ear- Wiz®. A flexible plastic loop with a safety stop that allows you to remove excess wax with the loop without touching the eardrum. Available in local pharmacies or drug stores.
  • Ototek Loop. A flexible plastic loop, designed by an ear surgeon, with an ear guard to prevent the tip from hitting the ear drum. (This device has a narrower tip than the Ear-Wiz.) Call toll free, 1-877-874-3929, or www.ototekloop.com.

Neither the Foundation, its Board of Directors, nor its Medical & Scientific Advisory Board endorse any of the above products. Please consult with your physician before using any new product.

Hearing Loss, Ear Pain in Ichthyosis Patients

Huang JT, Mallon K, Hamill S, Ohlms LA, Liang MG.
Pediatr Dermatol. 2014 Mar 6. doi: 10.1111/pde.12292. [Epub ahead of print]

During 2012-2013, the doctors at Boston Children’s Hospital, Harvard Medical School conducted a pilot survey study using FIRST’s website to obtain information about ichthyosis and its ear-related symptoms.  The survey was posted for six months, attracting 135 participants.

“While ear problems are well-recognized in patients with ichthyosis, ear-related symptoms have never been systematically investigated in those patients,” said Dr. Jennifer Huang, the primary investigator in the research project.  “In this pilot survey study, our aim was to determine the frequency of ear symptoms, hearing loss, and related medical interventions in patients with ichthyosis.  Our secondary aim was to compare the frequency of these items by age group.”

During the summer of 2013, at the annual Society for Pediatric Dermatology meeting in Milwaukee, a complete analysis of the data was released.  Among other factors, the data revealed that of all participants, 80% reported ear pruritus (itch), 66% reported trouble hearing, 29% reported frequent ear pain, 28% had abnormal hearing test results, and 16% had used hearing aids.  Of the 88 participants who reported trouble hearing, 24 (27.3%) had never been to a hearing specialist.  Significantly more participants > 18 years of age (74%, 57/77) reported more trouble hearing than participants ≤ 18 years of age (53%, 31/58).

Moreover, these recently released results did, in fact, support the theory that ear pruritus (itching), ear pain, and hearing loss are significant issues for patients with all forms of ichthyosis, across all age groups. 

As a precautionary measure to prevent hearing and ear pain issues, Dr. Huang recommends that both patient and doctor take a proactive role in thwarting more serious issues.  “All patients with generalized ichthyosis should be asked by their pediatrician or their primary doctor if they have hearing problems.  If hearing problems exist, a careful evaluation of their external ear canal and a hearing exam should be performed,” Huang said.  

She also encourages FIRST members affected by ichthyosis, who are not having routine ear exams, to consider requesting an exam. “Ask your doctor the proper procedure for manual cleaning. If needed, ears can be routinely cleaned at the doctor’s office, as well as at home. Also ear wax softeners can be helpful.”

Dr. Huang and her team plan to expand their research into phase 2. “Next step is meeting with patients, in-person, to conduct hearing tests and interview them one-on-one. This will further validate our data.” 

TeleIchthyosis - Since ichthyosis is a rare condition, sometimes your healthcare practitioner will need guidance from ichthyosis medical experts. Remember that FIRST has a Tele-ichthyosis portal, where medical staff can upload questions and photos and an ichthyosis expert will respond as soon as possible. If it is an urgent matter please call the FIRST office at 215-997-9400 and we will reach out to a member of FIRST's MSAB.

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The information on these pages has been provided through the generosity of the Ace in the Hole Foundation.

This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors nor Foundation staff and officials and sponsoring foundations endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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