I have twins who were born at 28 weeks...they have been really heathy up until 2 years ago....Their ears are a nightmare...chronic infections continually, odor, pain, drainage, you name it, its happened....After many, many antibiotics they still have infections...they have been cultured and they do have MRSA in their ears...we are currently seeing a infectious disease control doctor and started our last option of antibiotics...this is so potent they do have to be tested weekly for a weakening in blood count...they will be on this for 1 month if they can...
I write this in desperation of help....we were told that if this doesn't work that I have to resign myself to them being in pain and dealing with all of it until they get bigger.....How much bigger? What is this doing to their physci? I am so discouraged about all this.....they have had anesthesia now 4 times this year, will that hurt them? Became allergic to sulfu drugs last Christmas after being on them a while...they have been on the max dose of clindamycin off and on for a year and primsol, you name it they have taken it...we have done everything imaginable to try and fix this but there seems to be no end in sight....I feel their doctors are now just as frustrated as we are....they both also need major ear drum surgery on both of their ears but cant because of the drainage but from what I have read the infections can be caused by the large hole in their ear drums...I just don't know..would love to hear if anyone has dealt with this too....would love to talk about it...we have done ct scans also....
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Hi I am also a twin; and when my brother and I were born we always has very bad ear infections with the same symptoms that you describe my mother used to have to keep a bib on us all the time. But eventually we grew out of them.
OK first of all let me tell you that reading this sent chills down my spine!
I AM THE EXACT SAME WAY!!!!!!!!! I had my first set of tubes at about 6 months, it was two days before I had open heart surgery, by the time the tubes were put in, I had had over 15 major ear infections. I am 19 now and have 15 sets of tubes. I too have suffered HUGE holes in my ear drums as a result! Usually they have had to be surgically closed. The last one was over 80% of my ear drum and I had to have it closed down at the mayo clinic. I have a tube in my right ear right now that has been there for a ridicoulously long amount of time, because it crystalized to the bone and is just now starting to work its way out, and they are afraid it is going to leave a hole too. I too am alergic to sulfa drugs, and at one point got MRSA in my ears. The biggest thing though, is that I am doing great. I do have a hearing loss, and wear hearing aids, but that doesn't stop me from doing anything. I would encourage you to get their hearing checked diligently!
If you have any questions about my story please feel free to ask,
Brianna
Thanks for the info....We have had their hearing tested and so far so good....it hasn't affected their speech yet so that is a good sign....My father is completely deaf so it has always been a huge concern of mine....right now the MRSA is scary becacuse apparently it is resistant to all of the meds out there so I hate to know they can't do anything about it. I have read that it could spread but the ct scan showed no signs of damage yet to their mastoid bone...they are only 4 and been through so much I just hope this current med works and they can have their ear surgery again......they too have about 70% perforation in both.....thanks again its nice to talk to someone who can relate...
Well we went for our first week of blood work last week...noone has called to let me know the results so I am assuming they were ok.....we go back tomorrow t for the second week.....My kids seem so miserable...i think it is from having to wake them up in the middle of the night for 9ml of antibiotics...not fun....One of them cries alot over everything...I am scared its their ears and the medicine isn't working..so scary since this is the last resort...I have gotten where I hate to call the doctors office...the staff are always short and the nurses returning the calls really don't even know what their talking about...frustrating...ok...maybe I feel a little better getting it all out now.....just tired....
It has been a while since I was on here last....I have decided to wait things out....The boys seem to be ok (at least they don't seem to be hurting) The Last of antibiotics they were on dried their ears out so we did the ear drum repair. One of them only had to have one done. The other one just came back from the post op of the second ear and there was a new perforation on the same side of the last surgery. They have had drainage off and on since surgery that we just treat with drops right now....I guess there is nothing more to do at this point than watch wait and see......If we cant get the drainage under control then I guess we will go back to the infectious disease doctor....I'm just at a loss now....
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