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Discussion
Posted by tamjas
04/09/21 11:55 PM

Hi,

My son has had his first op for cholesteatoma removal.  We think he has had it for a long time.  I'm feeling a bit lost about it and don't really know what questions I should be asking the consultant.  At the moment he is very self conscious about it.  He can be fairly quiet and reserved when away from me anyway and I'm worried that he won't speak up for himself in school either.  Any advice appreciated.

Discussion
Posted by cc ndcs volunteer host
10/09/21 05:46 PM

Hi tamjas

Thank you for starting this thread.  I am sorry that you have not had any comments yet - Your Community is still very new and new members are joining each week. 

I was also very worried when my son was first diagnosed as hearing impaired while he was just an infant.  Like you, I looked for information everywhere trying to give him the best support.  Whenever my son changed his class teacher and school, I communicated with the teacher or SENCO in charge to ensure his needs could be met.  My husband and I supported my son to participate in different activities with both hearing and deaf children to give him more stimulation and confidence.  We kept encouraging him to speak up for his needs.  He became more independent when he was in secondary school and needed less of my involvement in getting him support.

In case you have not read it yet, there is some information on our website about cholesteatoma:

Cholesteatoma

https://www.ndcs.org.uk/information-and-support/childhood-deafness/causes-of-deafness/cholesteatoma/

 

Alex's experience of cholesteatoma

https://www.ndcs.org.uk/information-and-support/parenting-and-family-life/families-magazine/your-stories/early-years-stories/alexs-experience-of-cholesteatoma/

 

Paul’s cholesteatoma

https://www.ndcs.org.uk/information-and-support/parenting-and-family-life/families-magazine/your-stories/secondary-years-stories/paul-s-cholesteatoma/

 

Megan's cholesteatoma

https://www.ndcs.org.uk/information-and-support/parenting-and-family-life/families-magazine/your-stories/primary-years-stories/megans-cholesteatoma/

 

If you need any further support, please feel free to contact our Helpline team. 

Best wishes!

Discussion
Posted by chrissycc
15/09/21 08:13 PM

Hi tamjas,

My 8 yr old son had his first op back in April so we are quite new to all of this too.

Are you part of the 2 Facebook groups 'Parents and Families of kids with Cholesteatoma' and 'Cholesteatoma- the hidden disease'? I have found them to be a huge source of help, advise and support. I'm sure someone there will be able to answer any questions you have.



Discussion
Posted by emkaydeebee
15/09/21 09:09 PM

Hey Tamjas,

Sorry not to have seen this sooner. 

My 8 year old son had his operation early August. You're presumably home for 2 weeks with him just now til he has the packing removed?

We had the packing out two weeks after but found we still needed to fold a little bit of gauze in there as it still weeped a little. He continued with that even when school started. No one made anything of it though, but then they are used to him having a hearing aid in that ear normally. We saw a doctor just last week (5 weeks post op) and it turns out we should have been given some drops when they removed the packing. We've been using those now and they've made a massive difference to stopping the weeping. 

Our main frustration now is that he's still not yet allowed to do normal activities such as football and flute. School are being very careful too so he's not being allowed to play out at breaktimes. As you can imagine, for an 8 year old, this is frustrating! And you wouldn't know to look at him or his energy levels that he wouldn't be allowed to do these things. We're waiting to be signed off, but it won't be for another 4 weeks for us (just the way it has fallen with being able to be seen by his actual surgeon). On that note, assuming you are doing this via the NHS as we have, I would get in touch with them now to chase the appointment for the 6 week follow up.

I hope some of that helps. There's a brilliant facebook group for Parents of Children with Cholesteatoma, which is super for support and shared experience.

Discussion
Posted by princessvalerie
16/09/21 05:07 PM

Hello!

My son has a recurring cholsteatoma.  We've had multiple surgeries.  He is five. 

I'm happy to answer any questions I can. 

Prior to the surgeries my son wore hearing aids.  Now, he uses a n AdHear.  It's sijilar to a BAHA without the surgery. 

I don't love the thing, but he calls it his robot bolt and it doesn't seem to bother him. 

It definitely shows with short hair so yu woupd want to help the child feel confident in talking about what it is and what it does. 

I would encourage you to ask for a copy of your son's current audiogram. That will help you know what to do next in terms of hearing technology.

Kind Regards, 

V.