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Monday, July 21, 2014

Deja'vu

We are having deja'vu here at our house.  Once upon a time, we had a little boy who was deaf and we started writing about his journey.  Now, we have another boy losing his hearing and we are experiencing many of the same situations that we did with Chance.

We have gotten MRI's done.  Two of them.  Both came out clear with no indication of why our son would be losing his hearing.

We have been to several doctors, all of whom do not know why our son is losing hearing.  Chance was already deaf when we started taking him to doctors, but they never could tell us why he couldn't hear.

We have many many medical appointments, hearing tests and various other things related to figuring out what the needs of our son are, just like we did with Chance.

Insurance still doesn't see hearing loss as something that should be covered by insurance so hearing tests, hearing aids and various other things related to hearing loss are not covered by insurance.  We just went on the same insurance that we had when Chance was diagnosed a few months before our other son started losing his hearing.

I run around a lot from various doctor appointments to hearing tests to eye checks, to blood draws, to MRI's to hearing aid appointments to......well you get the picture.

Having a deaf child is not the worst thing that could happen.  We love our Chance and he is a great blessing to our family.

We want to understand though where we can, what is causing our son's hearing loss.

We have met  with a rheumatologist and she is treating our son with steroids for the next few weeks. We are looking to see if the cause of his hearing loss is an auto-immune disease where the immune system, for some unknown reason attacks a healthy ear.   The idea is that when you go on steroids,  they suppress the immune system and will disrupt your immune system from attacking healthy tissue.

We shall see what happens.  We had a hearing test done right before he went on steroids, then we will do a round of steroids for two weeks. and have a hearing test done with in the last few days that he is on steroids. If the cause of the hearing loss is an-auto immune response, then we should see an improvement in the hearing while on the medications.

We have talked to a family whose son has this condition and their son started out much like our son has. First one ear starts to loose hearing rapidly.  If there is no intervention, then the other ear starts to loose hearing as well.  Our son has one ear that has marked loss every time we have a hearing test. His right ear is borderline needing a hearing aid.  If the steroids do indeed help, we should see an improvement in hearing while on the medication. There is a window though where the loss must be addressed. Once the hearing has fallen all the way, you can not get any of it back.

We are just waiting to see.  Meanwhile, common side effects of the steroids, are being cranky and not sleeping well. That is a potent combination for a kid.

Just as we did with Chance, we need to explore all of our options and tell our son that we did all that we could to help him.

Having another deaf or hard of hearing child would not be bad.  We know the journey well.  But when a loss suddenly starts and there may be something that can be done to stop it, we have to give it a try.

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