Ear, Nose and Throat

Just because one kid is sick, doesn't mean the others take time off.  We spent the afternoon at the Ear, Nose Throat doc.  Spencer has such intense allergies and so many things he is allergic to that he will need to undergo more specific testing before they can start the weekly injections to try to control his allergic reactions.  He is less than thrilled about this so we will wait until right after Christmas. The testing will involve a series of injections and last 3-4 hours and leave him feeling pretty sick so it won't be too fun.  On top of that, it will take place the day after we get back from GI testing in Boise.  I planned it then because he will already be missing a few days of school so what's one more that week?

Sam also saw the doctor but there is nothing they can do for him.  He suffers much like a CF kid does with a thick, stringy mucus that his body has a hard time managing.  It's not as bad as a CFer but still a nuisance for him.  I wasn't sure that SDS kids could have the same kind of struggles with mucus as those suffering with CF so that will be something I will have to look into.

Shelbie really needs to have her tonsils out but in light of the recent problems with her, the doctor won't touch her with a 10' pole.  Here is the rock and hard place for Shelbie.  Oncology says that each time she gets a virus or bacterial infection from here on out, it will aggrevate her ITP and cause her platelets to fall so, it's like she is a walking time bomb.  The ENT believes that she is colonizing bacteria in her huge tonsils and perpetuating infections, sore throats and colds.  All these issues are creating a vicious circle of illness.  It' just something that we will have to get use to yet try not to get all paranoid about it. 

I did not escape the bad news today either.  I have had issues with hearing loss for some time now.  He diagnosed me today with Otosclerosis and possible Menieres disease.  Otosclerosis is a hardening and calcification of the bones in the inner ear.  It is progressive and leads to total deafness.  Surgery is an option but comes with risks and may leave you deaf anyways.  It is a genetic disease and is the leading cause of deafness in young adults.  Menieres disease doesn't have a cure either and causes dizziness, ringing in the ear and a fullness in the ear with pain.  I have all of these problems from time to time.  Our plan is to recheck my hearing in 6 months.  They will know by the hearing tests when it is time for surgery.  In the meantime, I get to buy myself a new ear....a hearing aid.  Merry Christmas to me!  That's just exactly what I've always wanted, a shiny black hearing aid with blue tooth!  They've come a long way.  I guess I better brush up on my sign language! ;-)

The more I get to know families who have children with SDS, the more I discover the problems the mothers have with their health.  I know a handful who have similar issues with arthritis and so on that I have.  I guess it makes sense, if I have passed on such horrific genes to my kids, then I must have some issues myself.  Genetics is so interesting.  I must have been the lucky one because my siblings are pretty healthy.  Oh well, better me than them.


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