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Joanna Kosmalowa answers the questions of experts and parents in the webinar on Parent Counseling on 23.06.2013

[Olga Peskova – Dallas] There are different views on what to advise parents outside the living room, that is, in everyday life. Many suggest taking more time to relax, and devoting time to oneself as well, in order to better cope with all the difficulties. What would you say?

For sure. We discuss this not just during therapy sessions, but in the support groups as well. What strikes a keynote is the thoughts and feelings of the parents, particularly of the child’s mother. Consider how she perceives her child, and how much time she judges necessary just for herself.
Together we discuss daily schedules, try to give time frames to activities, to see whether there is a period that the mother can devote to her own agenda. The time needed for daily chores matters, too.
Having suggested a certain strategy, in the next meeting we see how effective it proved to be. For example, you could try to secure a time in the afternoon when you can drink tea or enjoy a book, with the children not immediately by your side. A support group meeting is finalized with a ‘do something for yourself’ home assignment. Every group member says what they are planning, and in the next meeting they recount whether they were successful or not. Not everything can be achieved in one attempt, but for stay-at-home mothers this matters very much, and proves beneficial.

[Jana Frey_Berlin] How can this topic be presented best; do you teach it to experts? Which seminars do you conduct?

We organize various seeminars for experts and parents: communication, advocacy for self and child, and work on  self-image. The duration of one such seminar is around 6-8 hours over one or two days. The groups can be around 12 large. Attention is also given to family counseling regarding relations between the parents, because this also impacts the child, whether hearing-impaired or not.

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Monika Lehnhardt answers the questions of experts and parents in the forum discussion on Remote Fitting and Rehabilitation on 09.06.2013

[Olga Prokhorova-Moscow] How are less experienced specialists supported – what are the conditions, and how can this be implemented? As a junior specialist (SLP) I have an interest in this.

Which types of remote cooperation are you interested in? Various institutions operating under this method exist in different countries. We will try to find an expert who can cooperate on the topic which matters for you, basing specifically on remote communication.

[Jana Frey] From June 11th through June 14th, a rehabilitation workshop will be conducted in Lviv – this is for experts. For parents the date is June 15th. You can access it via the PORA weblog and take part:  http://www.lehnhardt-akademie.net/weblog-ru/category/planning-lviv/

Additionally, the software used for remote fitting helps the experienced expert adjust the processor settings on the PC of the less experienced one; the two experts can communicate with each other, and also with the parents. read more –>

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Doris Vercelli answers the questions of experts and parents in the seminar on Remote Fitting and Rehabilitation 26.05.2013

«Remote fitting is a technology which forms
a transition to home-made fitting,
and self-fitting by the patient».
Prof. A. Buechner (Director for Science,
German Hearing Center, Hannover,
ENT Clinic of the Hannover College of Medicine)

[Evgeniya Grigorieva-Astrakhan] Is remote fitting likely to be worth performing [to a higher degree] on adult patients with late onset of deafness?
Definitely not; it is just as suitable for younger children with different indications. But this is circumstance-dependent; the expert doing the fitting remotely should have a good rapport with the family and the child.

[Ulyana Kovna-Lviv] How old should a child be before it is possible to fit them remotely?
This depends on how well the expert is acquainted with the situation and the needs as well as the hearing ability of the child.
A webcam does not enable the expert to see the child’s reaction in detail, yet this is the data on which the correct settings are partly based. This is why the Hannover experts have spoken against remote fitting for infants and early school age children.

[Jana Frey_Berlin] So which age is appropriate for beginning the practice?
I think this may be considered once the child is one year old. The expert doing the fitting should also know the child very well.

[Monika LehnhardtAuggen] I know that in Australia as well as in Poland remote fitting is done on very young children, due to the huge distances involved.
We might try this in the future; after all, we opened just in 2011. We are very open to new experiences in remote rehabilitation.

[Nikiforov Konstantin] Do both children and adults receive remote fitting? Or is this just for the adults?
So far we’ve gained experience just with older patients; our youngest is 10 years old. We are confident that fitting over distance is possible for younger children, too.

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Tatyana Markova answers the questions of experts and parents in the webinar on Genetics, 31.03.2013

[Elena Zueva] If parents are carriers of mutations in different genes, will a child who has a genotype with two faulty genes (for example, connexin and another) be hearing-impaired?
We must be aware that every gene has a duplicate – one variant from the mother, and one from the father. So if we talk about the connexin 26 gene – indeed, if both variants of it have mutations, this will lead to hearing loss. In other cases, when we have flaws in different genes – for example, one of the parents may have flaws in both variants of the connexin 26 gene, and the other could be hearing-impaired because of problems in another gene (but the connexin gene is wholesome). This couple will produce normally hearing children, because different genes are accountable for different proteins.

[Екатерина] A child was diagnosed with bilateral chronic profound sensorineural hearing loss, prelingual, sporadic, genetic (autosome recessive OMIM 220290). Molecular screening revealed the proband as heterozygote carrier of the mutation 35delG in the connexin 26 gene (GJB2).
We would like to ask for advice.
What is the maximum we can do to now have a healthy child?
Maybe a certain hiatus is needed between pregnancies, or the children should be of different gender? Slide 26 of your presentation made me think of this.

Carriership of a mutation means the presence of one recessive mutation, which does not lead to hearing loss. HL is the result of a combination of two recessive mutations. Therefore, if search of only one mutation was conducted, the analysis is incomplete. The whole gene must be screened and the second mutation located.
The connexin 26 gene is located on a regular chromosome and is not linked with gender (the sexual X and Y chromosomes). Therefore, boys and girls, second and firstborn children are equally susceptible. Both older and younger children can be healthy, in the current marriage or in another. For two carriers of the mutation, the risk for every pregnancy is 25%. The sperm and egg cells contain only one variant of the gene, and so we cannot predict which of them will combine. There is a 50% likelihood of a carrier passing on his modified gene to a healthy child.

[Роман г.Владикавказ] Is there a point in having a genetic analysis at the maternity ward if we have audiological screening anyway? Is this really necessary?
Experience indicates it would be of some benefit if a genetic analysis could be used to support audiological screening. Around 10-12% of children with a modified connexin 26 gene pass the OAE test, so we miss these 10-12%. If we had access to a report on a pathological genotype, the child would be given complete audiological assessment immediately, instead of repeat OAE registrations, which is what we do now.

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Answers of Konstantin Nikiforov to questions asked by parents at the 17.06 webinar devoted to genetic aspects of deafness

During the webinar on June 17th, many parents who already have children with CIs, were concerned about the following: is it possible to predict the likelihood of having a deaf child in the future? There were other questions as well! They have been answered by Konstantin Nikiforov himself, in the posting below.


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Upgrade Questions and Answers – Seminar for Armenian parents

Armenian parents raised many questions when we met in Yerevan in July. They are relevant for all parents with children with cochlear implants and here are the answers to the questions:


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Deaf education changed by cochlear implantation? (Q&A)

These are the questions raised by parents during the presentation of Sue Archbold on June 27, 2012 and her answers.


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The answers of Dr. Barbara Streicher to the questions asked by parents in the webinar 13.06.2012 – second set

[Artur SalmiyarovSurgut] I have a patient who has been deaf for 15 years. All this time, he has continued reading and writing. Amazingly, his speech did not fall apart although he did not use any aids. He has congenital problems with his spine, he cannot walk and so does not attend any lessons with SLPs. We are planning to give him a cochlear implant. Do you think he needs P300? Will this give us additional data about the functioning of his cerebral cortex?

This question should be answered by a clinical audiologist.

Normally, patients with post-lingual deafness have very good prospects if they have normal cognitive and neurological development.

[Irina-Tambov] Should tablets with letters or words be in continued long-term use with a CI-implanted child? What if this was a late implantation?

This depends on how well the child masters reading. As soon as the children have learnt the words, the cards are no longer necessary. read more –>

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The answers of Dr. Barbara Streicher to the questions asked by parents in the webinar 03.06.2012

Sabine, mother of twins, Berlin – Our SLP estimates the vocabulary of my children as good. How can I provide an additional boost?

Firstly, I would like to ask a question back to you: on which basis would you qualify the vocabulary as good? Would it be good relative to the hearing age or the chronological age?

One thing is of principle: a child will be stimulated by surroundings filled with speech and language, through it the child will learn new words via “natural usage of language and speech”. As for hearing-impaired children, they should be hearing words, phrases and sentences in conjunction with an action, so that concepts represented by words stay in their long-term memory. read more –>

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Questions to Andrew Kendrick 2 – from the webinar on May 20th

In this posting, we have listed all the questions that Dr. Andrew Kendrick was asked during his presentation on May 20th.

UPDATE: NOW you can find the answers given by Dr. Kendrick in this posting as well! Please feel free to comment! read more –>

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