[CIS PIDD] [cis-pidd] XLA and cochlear implant

[CIS-PIDD]

Thank you very much for your comments. I think is definetely worth trying.
😄

Best regards

Guisela Alva
El 9/3/2017 9:30, "CIS-PIDD" <cis-pidd at lists.clinimmsoc.org> escribió:

> May not be translatable but I care for a 20 yo with ADA-SCID and
> sensory-neural hearing loss what got an implant several years ago and has
> done well with significant benefit.
> Richard Wasserman
>
> On Thu, Mar 9, 2017 at 1:48 AM, CIS-PIDD <cis-pidd at lists.clinimmsoc.org>
> wrote:
>
>> Dear Guisela,
>>
>>
>>
>> One of the (now adult) XLA patients I follow also had bilateral
>> neurosensorial deafness, no mutations found in the DPP gene, he received
>> bilateral cochlear implant with good success.
>>
>>
>>
>> Best
>>
>>
>>
>> Isabelle Meyts,
>> University Hospitals Leuven, Belgium
>>
>>
>>
>> *Van:* CIS-PIDD [mailto:cis-pidd at lists.clinimmsoc.org]
>> *Verzonden:* donderdag 9 maart 2017 7:21
>> *Aan:* CIS-PIDD <cis-pidd at lyris.dundee.net>
>> *Onderwerp:* [cis-pidd] XLA and cochlear implant
>>
>>
>>
>> Dear colleagues.
>>
>>
>>
>> I would truly appreciate your words of advise.
>>
>>
>>
>> I am following a 11 year old boy, diagnosed with XLA (BTK mutation), who
>> also presents with bilateral neurosensorial hypoacusia. I believe it is not
>> secondary to infections or medication, I think it could be
>> deafness-dystonia opctic neuronopathy syndrome. The patient is on IVIG and
>> is generally doing well.
>>
>>
>>
>> I have looked for information regarding the use of cochlear implants in
>> these patients. The information is scarce and I have found only a few case
>> reports, that suggest they usually don´t help.
>>
>>
>>
>> I would like to know if you have experience with cochlear implants in XLA
>> patients and if so, is it helpful? Would you reccommend to try it with my
>> patient?
>>
>>
>>
>> Thank you so much.
>>
>>
>>
>> Best regards
>>
>>
>>
>> Guisela Adriana Alva Lozada
>>
>> Allergy and Immunology
>>
>> Hospital Nacional Edgardo Rebagliati Martins
>>
>> Lima Peru
>>
>>
>>
>>
>>
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>
>
>
> --
> Richard L. Wasserman, MD, PhD
> Allergy Partners of North Texas
> 7777 Forest Lane, Suite B-332
> Dallas, Texas 75230
> Office (972) 566-7788
> Fax (972) 566-8837
> Cell (214) 697-7211
>
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