How keratoconus in children is different
In keratoconus, the cornea (the clear front window of the eye) thins and bulges forward into a cone. The irregular shape scatters light, so vision becomes blurred and distorted in ways glasses often can’t correct. For a full explanation of the condition, see our keratoconus page.
When keratoconus is found in childhood, it tends to behave differently from adult disease:
- It’s often further along at diagnosis. At a French national keratoconus center, 27.8% of children 15 and under were already at the most advanced stage when diagnosed, compared with 7.8% of adults.[3]
- It progresses often, and fast. In a study of 59 eyes of 9- to 19-year-olds, 88% showed progression.[1] In another study of 148 eyes of young people diagnosed at 18 or younger, 77% progressed over about three years. Eyes that were more advanced at the start were more likely to progress.[2] In the French study, keratoconus didn’t progress more often in children than in adults, but when it did, it moved faster.[3]
Eye rubbing and a family history of keratoconus are the strongest known risk factors, and allergy, asthma, and eczema are also linked to it.[4] Helping a child stop rubbing itchy eyes is one thing families can do.
Cross-linking comes first for progression
Corneal cross-linking strengthens the cornea to stop keratoconus getting worse. It has been tested in young people in a randomized trial. In the KERALINK randomized trial of 60 young people aged 10 to 16 with progressive keratoconus, the disease progressed in 7% of eyes treated with cross-linking compared with 43% of eyes given standard care, which included glasses or contact lenses as needed.[5] The authors concluded that cross-linking should be considered a first-line treatment in progressive disease. A pooled analysis of 37 studies of cross-linking in children found progression afterward in roughly 10% of eyes.[6]
In the US, the FDA-approved cross-linking label states that safety and effectiveness have not been established in patients under 14.[7] Your child’s cornea specialist will explain how that applies to your child.
Cross-linking aims to stop the cone getting worse. It doesn’t restore a normal shape, so many children still need a specialty lens to see clearly afterward. That’s where scleral lenses come in.
How a scleral lens helps a child see
A scleral lens is a large rigid gas-permeable lens. It rests on the sclera (the white of the eye) and arches over the entire cornea without touching the cone. Before insertion it is filled with sterile saline. Light passes through the smooth front of the lens and the even layer of saline, which fills in the cornea’s irregularities and largely cancels them out optically.
Because the lens rests on the white of the eye rather than the cone, it doesn’t rub the steepest point. Glasses, soft lenses, or smaller rigid lenses may be enough for milder keratoconus. Scleral lenses are usually considered when those don’t give good vision or comfort.
What the research shows
Pediatric scleral lens studies are small, mostly single-center, and usually mix keratoconus with other conditions. Taken together they suggest children can wear scleral lenses successfully with the right support.
Vision improves substantially. In a study of 25 children’s eyes, 14 with keratoconus, vision with scleral lenses was much better than with glasses after one month. Contrast sensitivity and the child’s quality of life also improved, and so did the parents’ quality of life.[12] In a series of 72 children’s eyes, 29 with keratoconus, mini-scleral lenses significantly improved vision, and most children wore them comfortably for about 10 hours a day.[10]
Many children keep wearing them for years. In a 21-year review of 209 children’s eyes at one center, 48 with keratoconus, 147 eyes (70%) were still wearing scleral lenses at the time of review, after an average of 8.2 years of wear. Sixteen eyes (8%) had stopped, mainly because of difficulty putting lenses in and taking them out. The status of the remaining 22% was unknown.[8]
They can delay or avoid a transplant in advanced cases. In a series of 24 children’s eyes, scleral lenses removed the need for a corneal transplant in six eyes with advanced keratoconus. Fifteen of 18 children were still wearing their lenses at an average follow-up of about nine months.[9]
Who handles the lenses
This is often the deciding factor. In the 21-year review, the clinic assessed whether the child or a parent could manage insertion and removal before starting, involved parents in training, and added extra appointment time for children.[8] In a series with an average age of about 13, the children managed insertion and removal themselves.[11] The authors of the quality-of-life study recommend making parents’ and caregivers’ involvement a priority when fitting children.[12]
In practice, a younger child usually needs a parent to put the lenses in and take them out. Teenagers often take over, with a parent checking the routine. Both should learn how to remove a lens, including what to do if it won’t come out.
Other options, compared
| Option | What it does | Typically suited to |
|---|---|---|
| Glasses | Correct regular blur only | Early keratoconus with little irregularity |
| Soft or specialty soft lenses | Mask mild irregularity | Mild cases |
| Corneal rigid gas-permeable lenses | Give a smooth optical surface on the cornea | Mild to moderate cases where the lens centers and is comfortable |
| Hybrid lenses | Rigid center with a soft skirt | Children who can’t tolerate a corneal rigid lens |
| Scleral lenses | Vault the whole cornea over a fluid layer | Moderate to advanced cases, or when other lenses fail |
| Corneal cross-linking | Strengthens the cornea to stop progression | Progressive keratoconus; doesn’t replace vision correction |
| Corneal transplant | Replaces corneal tissue | Scarring or failure of every lens option |
Questions to ask a scleral lens fitter
- How many children with keratoconus do you fit, and from what age?
- Has my child been assessed for cross-linking, and how long after it can we start a fitting?
- How will you teach both my child and me to put lenses in and take them out?
- What should we do if a lens won’t come out, or if my child’s eye is red or painful?
- How often will you see my child, and how will you check the fit as the eye changes?
- What should we do about lenses at school, during sports, and on trips?
Common questions
Is my child too young for scleral lenses?
Not necessarily. Pediatric studies include children fitted from early childhood through the teens, though children with keratoconus are usually older. What matters most is whether your child, with your help, can manage putting the lenses in, taking them out, and keeping them clean. Your fitter will assess that before starting.
Should my child have cross-linking before getting scleral lenses?
Ask the cornea specialist. Because keratoconus often progresses quickly in young people, many specialists consider cross-linking soon after diagnosis. Scleral lenses are for vision and don't stop progression. They are often used after cross-linking, once the surgeon says the eye has healed enough.
Who puts the lenses in: me or my child?
At first, often a parent, and many children take over as they get older and more confident. In one study, children with an average age of about 13 managed insertion and removal themselves. Fitters usually teach both the child and a parent.
Can my child wear scleral lenses for sports and school?
Many children wear them through the school day. Pediatric studies report average wear of around 9 to 10 hours a day. Ask your fitter about sports, goggles, and what to do if a lens needs removing at school.
Will the lens need changing as my child grows?
Probably, at some point. Keratoconus can progress and the eye changes with age. In a long-term pediatric study, lens diameters were enlarged slightly over the years. Expect regular check-ups and occasional refits.
How can we help keep keratoconus from getting worse?
Follow the cross-linking and follow-up plan from your child's eye doctor, and help your child avoid rubbing their eyes. Eye rubbing is one of the strongest known risk factors for keratoconus, and treating itchy allergic eyes can make it easier to stop.
My child is struggling to put the lenses in. What helps?
Parents often find a lighted insertion stand, working at counter height, and leaning over so the eye is directly above the lens make a real difference. Tucking the chin slightly can help keep bubbles out. If it still isn't working, ask your fitter for extra practice sessions, since handling usually gets easier with time.
What should my child's school know about the lenses?
Let the teacher and school nurse know your child wears scleral lenses and who to call if there's a problem. Many families leave a small spare kit at school with a removal plunger, sealed saline, a case, and glasses. Agree with your fitter in advance on what school staff should do if a lens becomes uncomfortable.
Can my child swim in scleral lenses?
Lenses should come out before swimming or any time the eyes will be underwater. If your child wants clear vision in the pool, ask your eye doctor about prescription swim goggles. If water does get on a lens, take it out and clean and disinfect it fully before wearing it again.
Can my child nap or sleep in the lenses?
No. Lenses should come out before any sleep, including a short nap in the car or on the couch. The only exception is a treatment that your child's eye doctor specifically prescribes and supervises.
What if my child gets frustrated and wants to give up?
That is common, especially in the first weeks, and many families say it gets much easier with practice. Keep sessions short and calm, celebrate small steps, and tell your fitter what is going wrong. They may adjust the technique, the tools, or the lens itself.