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Acute Mastoiditis: Our Near Death Experience

What a harrowing few days it has been. As I may have mentioned in other posts, my 5 year old had been sick almost constantly for months. Multiple trips to the doctors and courses of antibiotics that lasted for months… she was still sick and we had no answers as to why. She was in progressively more pain which she said was behind her ear. We knew she had fluid behind the ear, I had just taken her to the ENT and he said she needed tubes in her ears. Was this causing the pain? Were her molars coming in? Allergies? Tylenol and a sock filled with warm rice seemed menial but it was all I could do for her. I felt helpless.

Then then one day she came home from school and I noticed something was definately wrong. The ear she had been having so much pain around was literally pushed out, twisted forward and down. The area behind her ear was mush and swollen and red.

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I took her to the pediatrician and they said to go to the ER immediately. OMG!

After being admitted the first thing to do was a CT scan. She was diagnosed with acute mastoiditis which had spread to the lining of her brain. She went right to emergency surgery.

It was the worst mastoid infection the surgeon had seen. He spent hours removing infection and pus. He had to take out what was left of the damaged mastoid bone and then file the remaining bone smooth so it wouldn’t be jagged against her brain. She was stitched up and had a drain tube behind her ear. While he was there, the surgeon went ahead and put tubes in her ears too. He told us had we not brought her in when we did she would not have lived another 24 hours. YIKES!!!

Surgery went well but then it was a waiting game to see what damage was done… possible facial paralysis, sepsis, or brain damage to name a few of the things that could go wrong. Hearing loss is certain but we won’t know to what extent until she is all healed. The area where the bone was removed and the ear canal were filled with an antibiotic foam. With a few steroid drops a day the foam will slowly dissolve over the course of a month.

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Five hours after surgery she finally opened her eyes. Such an excruciatingly tense moment… but she recognized me! The doctor checked on her. She was okay! Then we just had to wait and see if the IV antibiotics were working. We had to wait on tests which took a couple of days.

During that time the doctor was amazed at how well she was recovering, considering the extent of the infection and the surgery itself. He had initially told us to expect a two week stay in the hospital but thankfully with her recovering so well and then the tests coming back with good news we were out of there in three days. We are continuing aggressive treatment at home and doctor visits twice a week.

God really answered our prays! I want to tell all you mommies and daddies out there…. do NOT ignore ear infections which is how this all started. Even if you take them to the doctor and they have antibiotics, if your kiddos ever complain of pain behind their ear that won’t go away… insist that they get an immediate CT scan because at that point the infection is already eating through the bone (hence the pain). There is no other way to confirm this infection other than a CT scan. It isn’t your fault or the pediatricians if this infection goes undetected… you just need to know the signs and be prepared before it’s too late. We came entirely too close.

 

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5 thoughts on “Acute Mastoiditis: Our Near Death Experience

  1. Oh, I can’t imagine how frightening this must have been for you and your daughter! Thank you for posting this, I never knew this could happen. I’ll definitely tell my daughter who has three children to keep watch for this if the kids have pain behind their ears. Wow. I’m so glad you caught this in time. She is just so sweet. Love your blog.

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  2. This just happened to my 8 yr old daughter! We took her to urgent care with ear pain a week prior where they held her down and flushed her ear 5x they sent us home with oral antibiotics and told to follow up with pediatrician. That night our daughter was screaming in pain for 2 hours straight nothing was working she still had a 102 fever with Motrin and her face was swelling and behind her ear had a red egg bump. We took her to the ER where I expressed my concerns that something was not right my daughter does not cry often something is really hurting her, they brushed us off and assured my husband and I it was simply an inner/outer ear infection and she will be just fine. They gave us ear drops and sent us home with a 101 fever and my daughter crying in pain. Monday we followed up with our pediatrician he checked her ear and stated it the canal looked great what she had was an outter ear infection we could stop the oral antibiotics and continue with the antibiotic drops. Tuesday, Wednesday my daughter went to school and acted just fine, Thursday as she was getting off the bus my mom called me at work telling me something is wrong, Natalie had a 102.9 fever and crying in pain. By the time I arrived 2 hours later her fever was 105.6 with Motrin, she was lethargic and unresponsive we rushed her to the ER where they made us wait in the ER for 5 hours!!! Finally after my husbands failed attempts of getting help a lady in the waiting room got up and yelled someone get this child help now! We were rushed back by this time my child’s fever was 104 she was projectile vomiting and screaming in pain I had to walk out to the nurses desk and beg for them to get us Motrin after waiting another 45 mins they administered her Motrin and zofran and had us wait another 3 hours before administering IV antibiotics and admitting us. When we arrived in the pediatric unit and the nurse took one look at our daughter and knew something was not right I cried because finally someone agreed, she had the doctor order a CT scan that came back showing she had severe Mastoiditis in her left ear and she was also sepsis!!! We were immediately transported to the University of Maryland Children’s hospital where my daughter underwent 5 days of IV antibiotic treatments. She had an allergic reaction called Red mans syndrome from an antibiotic that was not supposed to be administered to her per the infectious disease doctors. Our roller coaster ride continues with a 4 week treatment at home with oral antibiotics and many follow up visits. I felt My child was a test dummy since Mastoiditis is extremely rare, we were told our child was 1 in 100,000 and extremely lucky.

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    1. I am crying reading your comment. It brings back so many horrible memories and I am SO sorry you and your daughter had to experience this! Yes, it is rare but I feel our doctors/ENTs need to be WAY more cautious about it… especially since it is LIFE THREATENING!! I can not believe you had to wait hours upon hours before someone took the situation seriously!! We, as mothers, KNOW when something is not right…. oh my gosh what a roller coaster ride you must have had. That feeling of helplessness is all consuming. I’m so sorry you had to experience that.

      My daughter (who is turning 8 tomorrow!) has Steven’s Johnson’s Syndrome, where she can’t have anything Ibuprofen or in the Ibuprofen family. She is also allergic to many other antibiotics so we were extremely lucky that the Clindamycin they tried in her IV worked. Since this horrible experience, I am glad to say that she has not had ONE ear infection! (I hope this will be the case for your daughter!) The tubes they put in her ears have just recently fallen out, however the eardrums are not healing the holes that the tubes left behind and she will have to have eardrum reconstructive surgery some time in the future. Luckily her hearing is only mildly effected. Did they put tubes in your daughter’s ears? Did they have to remove any of the mastoid bone?

      If you have any questions or want to talk you can email me. I’d be more than happy to bond with another mommy that had to go through this!

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      1. So glad to hear your daughter has been ear infection free! I cringe over the thought of ever hearing my daughter say her ear hurts ever again lol they did not do any surgery and did not recommend any tubes. My daughter only ever had 1 prior ear infection so they said because she did not have chronic ear infections surgery was not necessary as long as antibiotics do their job. They told us what happened to our daughter they call a “fluke” in the medical world i am just so thankful she is on the mend! Praying the treatment continues going great and no further treatment or surgeries are needed. She has lost a tremendous amount of hearing in her left ear but the ENT told me it was normal and she should start getting her hearing back within a few weeks once it heals, fingers crossed! Our follow up is June 12th!

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