Paediatric Audiology Service Aims to improve outcomes for every child identified with deafness through effective rehabilitation Information for parents and carers of a child with bilateral hearing loss Guidance on hearing aids for: This leaflet gives information about our service; your child s hearing loss and the types of hearing aids we provide as well as hearing aid maintenance and repairs. PAEDIATRIC AUDIOLOGY - TEDDINGTON Teddington Memorial Hospital 1st Floor Outpatients, Hampton Road Teddington, TW11 0JL Tel: 020 8714 4108 Fax: 020 8714 4165 Email: hrch.audiology@nhs.net PAEDIATRIC AUDIOLOGY - HOUNSLOW Heart of Hounslow Centre for Health 92 Bath Road Hounslow, TW3 3EL Tel: 020 3771 6030 Fax: 020 8630 3272 Email: hrch.audiology@nhs.net Please visit our website: www.hrch.nhs.uk/audiology [Type text]
Hearing aid information for families of children with bilateral hearing loss Your child will recently have been diagnosed with a bilateral hearing loss and will be fitted with hearing aids. We recognise that this is a difficult time for families and hope that the information in this pack will help you understand more about your child s hearing, its implications on your child s overall development, communication and education. With your consent we will also work with other health professionals to best support you and your family. We hope you will share the pack with friends, relatives and other people who care for your children. Contents Key topics Page Information about hearing loss 5 What is a hearing aid? 7 What happens at the hearing aid fitting? 9 Troubleshooting hearing aid problems 12 10 Top Tips to help your child wear their hearing aids 14 How to re-tube an ear mould 19 Useful links and local support groups 21 Interested in join our Children s Hearing Services Working Group (CHSWG) 23 2
~ Our commitment to you ~ We are committed to provide your child with an excellent service to meet their individual needs To offer help and advice about your child s hearing loss and support when you are coming to terms with these changes in your family s lifestyle. To make every effort to see you for appointments on time To offer you appointments on suitable dates and times. ~ Your commitment to us ~ To inform us of any delays to appointments as soon as possible. To let us know as soon as possible if you are unable to attend an appointment (within 48 hours of the appointment) To take every effort to best care for devices and hearing aids loaned to your child as they remain property of Hounslow and Richmond Community Healthcare NHS Trust. To help, respect and cooperate with the clinicians assigned to your child. 3
Your Visits to the Audiology Department Your child has been allocated an Audiologist (Hearing specialist) from the Children s Hearing Service. Once your child has been fitted with their hearing aids we will regularly review their progress and frequency of the appointments depends on their age and developmental needs as well as your own concerns. You may not see the same Audiologist at every appointment but comprehensive notes are recorded from each appointment to ensure continuity of care. We will need to contact you to arrange further appointments so it is important that we have your updated contact details including home address, home and mobile telephone numbers and email addresses. Further information can be found on our website and there are also a number of local support groups and charity organisation that can support you and your child. Please see page 21 of this booklet for more information. Our Website www.hrch.nhs.uk/audiology is regularly updated with information about our service, recent news and events as well as useful links to other organisations. If you feel there is any additional useful information or FAQs that could be added to this booklet or our website please email audiology.hounslow@nhs.net How can you tell us what your think of our Paediatric Audiology Service? We very much value feedback from all of our patients, and our receptionist may ask you to complete an ipad patient satisfaction questionnaire when you come to your appointment. In the children s waiting area you will also find comments cards and a box, where you can tell us about your experience. We will keep you updated about the changes we make to our service in response to your comments. 4
My Child s Hearing Loss Figure 1: Speech banana What is a bilateral hearing loss? Any degree of permanent hearing loss that affects both ears. This booklet is specifically designed for families with children with hearing loss ranging from moderate to profound in nature. 5
Bilateral hearing loss can have many causes. It can be present from birth or can be acquired later in life possibly through infection or trauma. In many cases the actual cause of a bilateral hearing loss may be not be identified. 1 out of 1000 children are born with a permanent moderate to profound bilateral hearing loss in England. What does a bilateral hearing loss affect? Without early diagnosis and intervention a bilateral hearing loss can affect a child s speech and communication as well as progress in education and social interaction. Children with this type of hearing loss may respond to sounds but there overall picture of a sound experience is not complete. The impact of the hearing loss will depend on its degree however many children will have difficulty hearing and differentiating sounds. Also they may struggle to hear speech in background noise and their own speech may be unclear to understand. They may have slower progress at school and this could lead to behavioural issues as they may have difficulty interacting with others. In the classroom setting a child with hearing loss will need to maintain good concentration levels and this can often cause a child s tiredness to increase. Also, children with hearing loss can rely on visual information than a child with normal hearing therefore it is important to have their eyesight checked. What help is available? For many degrees of bilateral hearing loss, hearing aids can benefit your child. The sooner the child receives sound input the easier it will be for them to adjust and start using the new information from environmental and speech sounds. 6
What is a hearing aid? Hearing aids work by making sounds louder. They have a microphone to pick up sounds and then a receiver that sends the amplified sounds into the ear. Digital hearing aids amplify quiet sounds more than loud sounds to ensure the levels are within the child s comfort range. Does my child need a hearing aid? Hearing aids can be useful for children with any level of deafness any may be recommended to your child so they have the best chance to hear everything going on in their world NDCS. Hearing aids vary in size and shape and will be depend on your child s specific hearing loss. Hearing aids work by amplifying (making louder) sounds going on in the ear. The hearing aids will be programmed by your child s audiologist to match their deafness and take into account the shape of their ear. This will help your child hear everyday sounds as well as have access to speech sounds as early as possible. Digital technology If a child has a hearing loss in both ears then a hearing aid for each ear will be recommended. All our hearing aids have digital technology to ensure it can be best programmed to the child s hearing loss. The most common type of hearing aid for children is called the behind-the-ear hearing aid. This can fit children from very young babies upwards. 7
Figure 2. How the hearing aid works What is an ear mould? If hearing aids are recommended for your child they may need to be fitted to ear moulds in order for the sound to travel effectively into the ear. The ear moulds are made of plastic or silicone. The mould sits in the ear and is attached to the hearing aid by a plastic tube. As children grow very quickly it is essential that the impression of a child s ear is taken regularly so that moulds can be re made once it is too small. Impressions are made by taking a cast of your child s ear and new ear moulds will be ready 3-5 days after impressions are made. If the ear mould does not fit well the hearing aid may emit a high pitched whistling sound. Correct reinsertion of the mould may stop this whistling, if not, make an appointment to see your audiologist as a new mould may be necessary. 8
Figure 3. ear mould with picture inserted What happens at hearing aid fitting appointment? Following on from a child s hearing assessment a trial of hearing aid(s) may be suggested by the audiologist. There are two parts to a hearing aid: the hearing aid which sits at the back of the ear, and a custom-made ear mould which is made for The appointment for fitting of a hearing aid will have been made after discussion around the need for amplification. Once consent has been obtained we will need to take an impression of the child s ear for the ear mould. Occasionally, if appropriate, older children may be fitted with a hearing aid that consists of a smaller ear dome and thin tube that fits into the ear. However, it is important to note that the selection of hearing aids is dependent upon the child s age and individual hearing needs. Ear impression appointment 9
An appointment will be made to take an impression of the child s ear shape. This is to ensure the hearing aid can be fitted without discomfort. An appointment for the hearing aid fitting will either be made by the audiologist with parents at the time of the ear mould impression appointment or will be sent out once the ear mould is back. Hearing aid fitting appointment The HRCH Audiology Service holds clinics around the boroughs where patients are fitted with hearing aids and seen for ongoing maintenance, follow ups and advice with the 2 main sites being Heart of Hounslow Health Centre and Teddington Memorial Hospital. Your appointment will be with a Paediatric Audiologist who will ensure the device is optimally fitted to suit the wearer s needs and being able to advise on use and benefit. It is possible that other health professionals including Educational Audiologists (Teacher of the Deaf) or any other support worker could be present for this appointment with your consent. We would advise. You can attend this appointment with your partner/parent/sibling. During the appointment To begin, the Audiologist may repeat the hearing test if there is a history of fluctuating hearing noted in the history otherwise a check of the fit of the ear mould that has been selected for you will be conducted. Programming the hearing aid Using the hearing test results that were obtained at your last appointment, the Audiologist will programme the hearing aid using a lead plugged into the hearing aid and attached to the computer. During the programming a measurement will be taken from the patient s ears to help customise the sound to not only the level of hearing loss but to take into account the unique anatomy of one s ear canals (Real Ear Measurement). The Real Ear Measurement will involve the patient listening to sounds coming through a speaker set on the desk. We will start by placing a small tube in the ear canal. Then we will repeat the test with the tube and ear piece in 10
your ear and the hearing aid attached. Some of the sounds may be fairly loud but will not cause you any discomfort. The Audiologist will then use these tests to make fine adjustments to the hearing aid and ensure it is well fitted for the patient. Setting up the hearing aid controls Based on individual circumstances and other factors such as age we will discuss any agreed needs in terms of situations where optimal amplification could be achieved through the use of different programmes e.g. background noise situations (older children). These agreed needs will help the Audiologist decide which programmes the patient will need on the hearing aid in order to gain most benefit from using it. How the hearing aid works/maintenance We will explain how the hearing aid works. We will show everyone involved how to use the hearing aid and allow for practise of maintenance. The maintenance will include switching the device on and off, cleaning the device, insertion and removal of the device and additional needs. Hearing aid follow up appointments Please ensure you bring your child s hearing aids to all appointments These appointments will be booked in at regular intervals to monitor your child s hearing levels, review their progress with their hearing aid(s), and address any problems experienced. During these appointments we may also make new ear moulds for your child because as children get older, the size and shape of the ear changes. Speech test will also be done to ensure the child is hearing the speech range with their hearing aids and hearing aids will be re-adjusted accordingly. Hearing aid fitting appointments will be booked in 8-12 weeks for babies below 2 years of age at three to six monthly intervals for children aged seven years and below and annually for children above the age of seven. During these appointments you will be seen by one of our audiologists and may also be accompanied by an educational audiologist, who can give you support and advice on managing your child s hearing aid(s) at home and at school. 11
My Child s Hearing Aids Your child has been fitted with digital hearing aids. The hearing aids have been set up or programmed, using information from their hearing test and the individual shape of their ears. This tells us the amount of amplification needed for each pitch (frequency) of sound. These are the hearing aids your child has been given: Model Serial number Right Left As the hearing aid has been set up specifically for the right and left ear it is important they are not mixed up. Each side can be identified by the following coloured markings on the hearing aid: RED- Right ear Blue Left ear Common Hearing Aid problems Problem Possible cause Solution Hearing aid not working Hearing aid whistling when in the ear Battery low and needs replacing Battery wrong way round Blocked tube Faulty hearing aid Ear mould not inserted correctly? Poor fitting ear mould Wax build up Tubing torn Change to new battery Check battery insertion Clear blockage with puffer or change tubing. Contact audiology department Re insert ear mould securely into ear Make appointment with audiology to check ear mould fit Make appointment with audiology to check the ear Change tubing or make appointment with audiology 12
This booklet only gives general information. You must always discuss the individual treatment of your child with the appropriate member of staff. Do not rely on this booklet alone for information about your child s treatment. Here are some frequently asked hearing aid related questions: How do I keep my child s hearing aid in place? Sometimes it can be difficult to keep the hearing aid in place behind the child s ear especially if the child is very young. Your audiologist can issue you with hearing aid clips that attach the hearing aids to the child s clothing so it does not get misplaced. Also double sided tape discs are available which is similar to toupee tape to stick the hearing aid in place. For more information about additional accessories contact NDCS Freephone number in the appendix. How should I encourage my child to wear the hearing aids? Each child reacts differently to getting hearing aids. Some will wear them straight away and others will be more nervous or upset. Also, some children will like wearing the hearing aids in certain situations but not others. It is important to remain patient with your child and mindful that each new listening situation will present with different challenges which your child will need to adapt to. Your child can learn to adapt to the challenges however taking the hearing aids out can slow the process down. 13
10 top tips to help your child wear their hearing aids: 1) Reward your child for wearing the hearing aids for short periods of time of 10-15 minutes. The use of reward charts can be handy in the process once the child can understand the concept. 2) Make it fun! Try putting the hearing aid on a teddy or a doll and make it into a game. Let your child put the hearing aid over your own ear and then try an activity or read a story wear the child is encouraged to wear the hearing aid themselves for the duration of the story 3) Take it step by step. If the child is particularly wary of the hearing aid let them firstly get used to how the hearing aid feels in their hand or leave it on the table whilst they play. Have a special decorated box to keep their hearing aid in. 4) Try warming the mould in your hand first to make it more pliable and comfortable in their ear 5) Introduce different parts of the hearing aid at different times. The mould one day and the hearing aid the next day. 6) Use a timer so they have a visual cue of how long they should wear the hearing aid for. 7) Whilst the child wears the hearing aid it is important you try and label the sounds they can hear, watching their favourite TV shows with them and talk to them as much as possible whilst making good eye contact. This can help them feel the benefits the hearing aids give them in situations they enjoy. 8) When your child is first fitted with hearing aids it is important to encourage them to wear both during all waking hours. 9) Try to build up the use of the hearing aids gradually, until they are worn consistently for a good part of the day as recommended by the audiologist. For younger children it is a good idea to start with short sessions of 30 minutes or so when they can have your full attention with an activity that they enjoy, for example a favourite book. 10) When first fitted it is natural for you and your child to feel anxious towards wearing the hearing aids. It is important to try and remain positive as this will encourage the child to also have a positive opinion about the hearing aids. This is especially important for older children. 14
Will my child with hearing aids be able to hear well in all environments? Hearing aid amplification generally focuses on speech sounds and background noise will also contain those same sounds. Therefore in noisy environments (birthday parties, noisy restaurants) your child may find it harder to hear compared to in quiet environments. It is important to try and give the child an optimum listening environment for example with soft furnishings and carpets to stop sounds bouncing around the room and back. Also, it is helpful to turn down background sounds like television volume when you are speaking to your child. Why are the hearing aids making a noise (like whistling)? Hearing aids are programmed to amplify and give out sound therefore they may whistle at some point. This whistling is called acoustic feedback and it happens when the microphone has picked up the sound coming out of the hearing aid and amplified it. Our hearing aids do work hard to try and reduce the amount of whistling however certain factors may make it worse. These factors are mainly due to the sound leaking out of the hearing aid because the ear mould is not fitting well. As children grow so fast it is necessary to have new moulds made regularly. For very young babies this may be every 3-4 weeks. Other factors for causing whistling (feedback) are: Ear wax - the sound from the hearing aid is entering the ear but is bouncing back from the wax. It is important never to use cotton buds to clean your child s ear but if you feel there is excessive wax please make an appointment with the audiologist or GP to check and give advice. Small ear canal Poor ear mould position Feedback may occur when holding a young baby close, such as at feeding time. This might also occur when the baby is lying down. You may need to 15
try and hold your baby in a different position, or remove the aids while feeding. If this problem persists, have a chat with your audiologist. I have lost the hearing aids what shall I do? Call your local hearing aid department as soon as possible Let us know if you have lost the ear moulds Which aid is lost left or right? Specify whether you have lost the mould, the hearing aid or both. How regularly will my child be reviewed in the hearing clinic? The frequency of appointments and reviews for your child will depend on their age, development and progress with the hearing aids We will see your child regularly for new ear moulds and any necessary hearing aid repairs We will review your child s hearing by carrying out assessments every 6/12 months dependant on the child. What should I tell my child s school teachers? With your consent your child will be referred to a specialist teacher of the hearing impaired who will help support your child at home and at school They will liaise with school teachers and it is important all teachers are aware of your child s hearing loss so they can try and adapt the classroom environment and have the child sit closer to the front of class They could also introduce a radio aid to help the child hear their teachers more clearly in an otherwise noisy classroom environment. How do I protect my child s residual hearing? 16
It is important that your child avoids listening to excessively loud sounds for long periods of time. This includes loud music from personal music players and being around loud music at parties and concerts. Both the level and duration of listening time are important factors to be considered. If your child develops an ear infection you should see your GP as soon as possible. The ear infection may cause a temporary deterioration in your child s hearing and if left untreated for long periods of time this deterioration could become more permanent. How should I expect my child to respond and development now that they wear hearing aids? Every child s hearing ability and acclimatisation to hearing aids is different. It takes time for a child to acclimatise and understand sounds through the hearing aids. The Early Support Monitoring protocol for deaf babies and children is used by audiologists and teachers of the hearing impaired to help families understand their child s development better and share their observations of their child s learning and development with other people. If your child s reactions to everyday sounds change or if they show any discomfort to sounds whilst they are wearing the hearing aids please contact the audiology department so necessary checks and adjustments can be made Checking hearing aids You will need: A stetoclip (listening tube to connect to the hearing aid) Spare batteries A puffer What to do: With young children and children with additional needs it is important for the hearing aids to be checked at least daily and immediately if the child becomes less responsive and does not appear to be listening as well. 17
1. Remove the aid from the child s ear. 2. Pop the mould into the end of your stetoclip.. 3. Listen to the aid while talking checking that the sound you are hearing is of good quality. You should hear some beeps when the aid is switched on. Have a listen for any crackles or breaks in the sound. 4. If there is no sound, change the battery dispose of it safely. 5. Check the mould and the hearing aid for cracks and damage to the switches, the hook and the earmould tubing. 6. If there is moisture in the earmould blow it out with the puffer. If there are holes or twists in the earmould tubing then contact your Teacher of the Deaf/ parents to replace the tubing. If there is a problem with the aid contact the Audiology Department for a repair appointment. How an ear mould is made: The impression made by the audiologist is sent to the laboratory in a box, with a printed label stating the type of material, style, colour etc. required. Ear mould manufacturer returns completed mould to the hearing clinic or parents address (at parent request) within 3-5 days. Earmoulds for babies and young children are given priority. How to retube an ear mould: It is important to replace the earmould tubing if it becomes cracked, discoloured or very stiff. Ideally the tubing should be changed every 4-5 months but this varies for every child. When removing the ear mould from the child s ear it is important not to pull it out by holding the tubing as this can cause it to become weak and the ear mould can also tear around the area where the tubing passes through. 18
1. Pull the old tubing out of the earmould. Do not throw the old tubing away as you will need it later. 2. Cut the last 5 cm (2 inches) of a pre-bent piece of tubing. Make sure you cut at a slant. 3. This tapered end needs to be pushed into the earmould. 4. All of the tapered section should come through the other side. 5. Cut the tapered tubing as close as possible to the earmould. Any tube sticking out could rub your ear and make it sore. 6. Take the old piece of tubing you saved and line it up with the newly threaded tube. 7. Cut the end to the same length. 19
8. Push the end of the tubing onto the plastic nozzle on your hearing aid. 9. Make sure that it bends in the right direction, as shown in the picture. If there are any other concerns about your child s hearing aid you can also contact your child s specialist teacher of the hearing impaired (ToD). Please contact us if you are unsure of their contact details. 20
Useful contacts and local support groups TRAPHIC: Twickenham and Richmond Area Parents of Hearing Impaired Children : A local support and advocacy group for parents of children with permanent or chronic hearing loss. If you want to get in touch with other parents/carers to chat and share experiences, please contact organiser: Nicola Staines: Traphicgroup@virginmedia.com TEL: 020 8977 6801 National Deaf Children s Society (NDCS): www.ndcs.org.uk NDCS has a wealth of online information, as well as factsheets, booklets and DVDs to download or order. There s information on audiology, financial support, education, technology, communication, and much more. Hounslow and Ealing Deaf Children's Society is a new local group run by parents and carers of deaf children, working together with local health and education professionals. Get in touch with committee on hounslowandealing@ndcsgroup.org.uk Action on Hearing loss: www.actiononhearingloss.org.uk Toy Libraries: www.hounslowtoylibrary.co.uk Hounslow Toy library collection includes many well designed toys, games, puzzles and equipment and has: Toys which can be borrowed regularly for a fixed period of time and changed for others when you want. Toys suitable for children with additional support needs. Trained and experienced staff who can provide reliable information, ideas and advice about play. Stay and play during our opening times with indoor and outdoor play Other Toy librarys can be found here: 21
Ham Toy Library Meadlands Primary School, Broughton Avenue, Surrey, TW10 7TS Telephone: 020 8940 9207 Fax: 020 8255 2488 Email: office@meadlands.richmond.sch.uk Marble Hill Playcentres Toy Library Marble Hill Park Richmond Road, TW1 2NL Telephone: 020 8891 0641 Three Wings Trust Toy Library-for Children with Special Needs Croft Centre, 20 Windham Road, Middlesex, TW9 2HP Telephone: 020 8831 6176 Fax: 0208 831 6288 Contact a Family 209-211 City Road, London EC1V 1JN Telephone: 020 7608 8700 National freephone helpline: 0808 808 3555 Fax: 020 7608 8701 Email: info@cafamily.org.uk Website: www.cafamily.org.uk 22
Would you like to be part of a group of parents and professionals helping improve the hearing service? If so, please consider joining our Children s Hearing Services Working Group (CHSWG) What is CHSWG? CHSWG (pronounced chizzywig ) is: "The framework for multidisciplinary working within a Newborn Hearing Screening Programme is the Children's Hearing Services Working Group (CHSWG). CHSWGs cover all services involved in supporting deaf children and their families. All CHWG members should work together to continuously monitor and improve services for deaf children and their families What do we do? Each local authority in England has a CHSWG. These groups are composed of all the services which support hearing impaired children in the area. CHSWGs meet four times every year to discuss ways to improve provision and integrate their services effectively. Who is involved? CHSWG meetings are attended by representatives from many services, including new born hearing screening,paediatric audiology, speech and language therapy, education services, social care, healthcare commissioners and both local and national voluntary organisations. In addition to these professionals, CHSWGs have active involvement from local parents of hearing impaired children. One of the most important functions of the CHSWG is to ensure that the services provided locally match the needs of the families who use them. How can you be involved? We need more parents and hearing impaired young people to take an active role in shaping services for hearing impaired children in the area. If you live in the Borough of Hounslow and Richmond and you have a hearing impaired child, or you are a hearing impaired young person yourself, please consider joining one of our CHSWGs. You are also welcome to attend one of our meetings to see if you want to be part of this group. If you are interested in taking part in a CHSWG please contact the Audiology department. 23