Living With Retinoblastoma ~ Part II

Today we continue with Part II of Living With Retinoblastoma, a fast growing eye-cancer which affects babies and young children.

Retinoblastoma affects about 1 in 15, 000 live births, and an estimated 9,000 children develop the cancer globally each year.

These posts cover living with retinoblastoma for those who have either had treatment for or have been through enucleation (surgical removal of the eye).

The reason for the posts is to help both children with retinoblastoma and their parents cope for the next few years to the rest of their lives.

Today’s post will concentrate on handling and cleaning the “special eye” as well as dealing with your own anxiety and that of your child.


Handling the Special Eye

Removing and replacing a special eye for cleaning and maintenance does not cause pain. The physical action of manipulating the area, however, can distress children. When children are anxious, they naturally tense up in anticipation of pain.

The tension created can in itself cause pain where there would be none if the child were able to relax.


Parental Anxiety

Depending on your child’s body, their special eye may need daily cleaning. It is important for you to gain familiarity, confidence and comfort managing the removal and re-insertion of the eye.

Many parents are uncomfortable initially when faced with regularly managing removal of their child’s special eye for cleaning.

When you are unsure or nervous about regular removal or maintenance of your child’s special eye, they will pick up on it and may be upset or fearful when cleaning needs to be done.

Remember, practice makes perfect and the more you do something, the more comfortable you will be with doing it. With that comfort comes confidence. You can do this, and you and your child can be successful together.


Your Child’s Role

Many children over the age of 2.5 to 3 years have the fine motor skills to assist in appropriate care and removal of their special eye. They should be carefully prepared and supported in learning how to do this safely.

Many children like to be independent. Handling their special eye is a natural task they should learn so that it can become a part of their everyday self-care, like learning to button a shirt or tie a shoelace.

Practice and preparation are important parts of making friends with their special eye, so it is a good idea for your child to get into the habit of making eye-care a part of the daily routine, along with bathing and brushing their teeth.

Children need to learn to take out, clean and replace their special eye in case it is dislodged or needs to be cleaned when a parent is not present. Knowing how to handle this independently makes this possibility manageable and reduces stress for everyone – the child, parent, teachers and peers.


The Handling Process

Knowing how to remove and replace the eye reduces stress for the child, parents and carers. Reducing anxiety during the handling process will enable your child to learn and be involved.

Go through the following steps together, one at a time, and repeat them regularly to develop confidence.  Use the anxiety-reducing approaches below to support yourself and your child through each stage of the process.

Insterting-and-removal-of-Eye-prosthesis.001Wash your hands (make sure the fingernails are always trimmed/maintained)

Look in the mirror (this visual of the eye is important until children master the steps)

Gently touch the area around the special eye

Place your index finger in the corner of the special eye, closest to the nose (children often like to use their dominant hand to do this)

Gently press inwards, and hold the special eye between the index finger and the thumb

Gently slide the special eye out of the socket

Carefully clean the eye with cotton/gauze pads and cool boiled water

To return the special eye to the socket, gently lift the upper eyelid with the index finger of the non-dominant hand, sliding the special eye under the lid, closest to the nose again.

Push the special eye slightly upwards, while pulling down the lower eyelid with the thumb of your other hand, and slide the lower lid over the special eye.

Blink and adjust as needed.

Once your child gets used to doing this with you they will soon be able to do it on their own, and once they become comfortable with taking the eye out and inserting it again in front of the mirror they will eventually be able to do it without a mirror.


Anxiety Reducing Activities for Children

Some children become upset or fearful about having their special eye touched, removed or manipulated by parents or other people. If your child is anxious, it is important to practice anxiety-reducing activities to help him or her calm down and get through the experience.

Anxiety-reducing activities children can learn, practice and implement when necessary include:

Deep breathing – imagine blowing up a balloon, or blowing away fear and discomfort

Counting – counting up to 10 or down from 10, counting how quickly it takes Mom or the medical team member to remove the special eye

Singing a Songsinging a favourite silly song or calming song, or writing your own song that helps you relax.

Guided Imagery – taking a trip in your imagination to a favorite place, or imagining that you’re a robot transformer changing shapes while your special eye is being removed.

Stress Balls – squeezing a stress ball or shape can help you squish away all your fears and upsets. Hold the ball and squeeze for 10 seconds.

If a child is really upset and resistant to other members of the medical team touching their special eye, the best approach is to teach them how to do it independently.


Keeping the Eye in Place

As your child grows and changes, issues may arise around keeping the special eye in place.

Sometimes the eye will dislodge naturally. Most often, it is removed by a curious child who has learned quickly how to handle the eye.

Being confident and able to remove an eye independently is a skill to be celebrated, but children need to learn about when this is and is not appropriate. They need consistent encouragement as they become skilled at keeping the eye in place.


Why the Eye Might Come Out

After a new eye is fitted, it can shift and may need to be moved into place. Figuring out the exact shape and size for a perfect fit can take time and adjustments from an ocularist.

When a child is participating in more active play, the special eye may get bumped or shift within the socket. Rarely, the eye may actually be dislodged right out of the socket and need to be put back in its proper place.

Although this is uncommon, it is important to give your child the support and confidence to manage returning the special eye to the socket if this happens in a public place, with or without a parent’s assistance.

Some children with special eyes are not fearful of touching their special eye. This comfort in managing and manipulating their own special eye is wonderful for cleaning and medical appointments, but can cause parents some stress and anxiety when it is repeatedly removed.


Setting Boundaries

Firstly it is really important to praise your child for being comfortable with the special eye.  This is an important skill to be promoted and protected.

hqdefaultExplain that there are appropriate places and times when your child will need to remove the special eye. When cleaning it or when attending a medical or ocularist appointment. If the special eye gets bumped or if something gets into the socket, like dirt or sand, and requires cleaning.

Write a short story or create a simple song together with your child about when it’s OK to independently remove the special eye. This will help reinforce when this action is OK and helpful, and even encouraged and celebrated.

Similarly, if your child regularly removes the special eye in a public place, you can also create a social story or songs about when it is not appropriate.  Let your child know you are proud they can do this themselves, but that they are not to take the eye out at school or in public unless it needs to be cleaned or repositioned.

This is a supportive way to teach rules or restrictions about touching the special eye.


Set Your Child Up For Success

Punishing a child for regularly removing the special eye in inappropriate places can work against their continued comfort and success for removing it when necessary and appropriate.

Try to “help” your child be successful by giving him safe and appropriate opportunities to remove the eye, and gentle reminders to leave it alone in other places. Sing a reminder song you create about the places it is ok, and not ok to remove the special eye.

Praise successful visits to public places when your child did not remove or touch the eye.

Finally, you may need to practice some scripts, or things to say to friends or strangers, when your child removes the special eye in an inappropriate place.

It is great that PERSON is comfortable managing / touching his special eye, but we are still learning about WHEN it is OK, and not OK to touch it.”


Continued in Part III


About LFCT

CHILDHOOD CANCER and CHILDHOOD CANCER AWARENESS Little Fighters Cancer Trust is a non-profit Childhood Cancer support organisation that offers support and aid to Children with Cancer and their families. When a child is diagnosed with cancer it affects the whole family. One of the parents, usually the mother, must give up their job to care for the child and this creates financial problems for the family. In South Africa especially the majority of these families are not well-to-do; many of them are rural. A diagnosis of cancer can wipe out any family’s finances, let alone a poor family. The costs of special medications, special diets, hospital stays, transport to and from the hospital or clinic and accommodation and food costs for the mother who spends most of the time at her child’s bedside are astronomical. These are the people and problems that fall through the cracks, and these are the people that Little Fighters Cancer Trust has pledged to help in any way possible. LFCT takes a holistic approach to assisting the Children with Cancer and their Families, with the main aim to be the preservation of individual dignity and pride. Little Fighters Cancer Trust also focuses on promotion and advocacy of National Childhood Cancer Awareness in an effort to increase awareness of Early Warning Signs of Childhood Cancer. This would result in earlier diagnosis, giving the Child with Cancer more of a chance at Treatment and Survival. See "About" for more Background info

Posted on 12 October, 2016, in Advice & Tips, Blog and tagged , , , , , , , , , , , , . Bookmark the permalink. Leave a comment.

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