Chronic Eye Infections

Our daughter has had chronic eye infections in her left eye since she was a baby.  The ophthalmologist explained that the infections are due to her tear ducts being smaller than average because of her Down syndrome.

Chronic eye infection of left eye Down syndrome

Chronic eye infection of left eye

I am a purist as much as possible and usually treat illnesses at home naturally when I can.  Kairi has had many medical issues that cannot be treated naturally, so I have to keep one foot in the medical world and one in the natural world.  With her eyes I have tried many natural treatments like: tear duct massage, warm compresses, using homeopathic drops, wiping her eyes with baby shampoo, chamomile tea drops, raw honey rubbed in, and a few other things I can’t remember now.  Most eye infections resulted in a prescription for antibiotic drops or antibiotic cream.

Welcome Back to Arizona

Early August 2013, we had just moved back to Arizona from Utah and were in the whirlwinds of unpacking, getting life setup, and both working full time jobs right away.  It was Friday night at dinner when I noticed Kairi’s eye looked really red.  It was worse than normal so I skipped the natural treatments and went right to the extra antibiotic drops we had on hand for such instances.

Saturday morning she woke with a thick crusting on her eye that sealed it shut along with some mild swelling.  I wiped away the crust and discharge, then inspected her eye.  It was extremely red and looked pretty nasty.  Since we had dealt with this so many times I thought I had it under control.  The antibiotic drops always resolved the issue.  I figured I could wait until Monday to get her to the eye doctor for more drops if she even needed it by then.

Eye infection

First thing in the morning

Upon inspection Sunday morning I was very worried, the eye had not improved and was slightly worse.  The antibiotics usually show a drastic improvement overnight.  I decided she needed a doctor’s help, so we headed to the Phoenix Children’s Urgent Care.  I assumed they would give us different drops and send us on our way.

Scary Stuff

When the doctor saw her eye she said I should take her to Phoenix Children’s Hospital (PCH) to have a CT scan right away.  She suspected orbital cellulitis, an infection of the eye socket, and explained that it could infect her brain if not treated aggressively.  I have a long history with doctors due to Kairi’s many surgeries and illnesses.  Additionally, my older daughter had a liver transplant and many other medical procedures so this is not my first experience with freaked out doctors.  In the 22 years I have worked closely with doctors on my children’s behalf I have observed that they can go waaaaay overboard in requesting unnecessary, dangerous, and costly tests to be performed, so I was cautious.

I questioned a CT scan because what always goes through my mind is, Cancer Tube.  I asked if they could do an ultrasound or an MRI instead, both of which do not produce radiation for the body to absorb.  She explained that the CT is the only way to know if the brain is affected.  Based on the fact that Kairi already has so many health problems we did not want to add blindness, brain damage, or even possible death to that list and consented.

This Sure Gets OLD!

At PCH we had to go through the first round of nurses and doctors asking tons of questions (most of them irrelevant to the current issue) to even get taken to an exam room.  They ask all the typical questions about development, health history, and vaccines.  She has a very long health history due to her heart and eye surgeries, her autism, the long list of gut issues, and her Juvenile Rheumatoid Arthritis (JRA).  We no longer vaccinate her, or any of our kids for that matter, due to my belief that she was injured from a vaccine.  I believe she developed JRA and autism because of a vaccine.  Having to explain and then fight with the medical staff about it also gets OLD!

Once we made it through the long process of talking to the nurse’s assistant, then a nurse, then the doctor it was past dinner time.  Hospital food is horrific, and in my opinion, keeps  hospitals full with return customers but that is a whole other rant.  Finding something to eat from their horrible menu is a challenge but we settled on rice, hash browns, and fruit while we waited for all the tests to be ordered.

As usual, because I do not vaccinate they have the head doctor come in and try to “educate” me on the dangers of not vaccinating.  I have learned to stand up for myself and start off gentle and kind but sometimes resort to being that mom, and say NO!  You know that mom, she is the difficult one who won’t do what the doctors say and questions every test, and medication they offer.  I also refuse the candy and soda they offer to her and they usually think I’m weird.

We say NO to vaccines!

We say NO to vaccines!

Diagnosis

After the CT scan we waited another 2 hours for the doctor to review the results with me.  There had been a shift change and a different doctor came in.  He was kind and respected my decision to not vaccinate and to minimize procedures and drugs.  He explained that she did not have orbital cellulitis but instead a really bad infection.

The doctor gave us oral and eye  antibiotics then discharged us.  I filled the prescription there at the hospital and we got home around midnight.

Now Don’t Get Sick

We saw the ophthalmologist that treated her last time we lived in Arizona.  Of course her eye looked great by the time we saw him so he was not alarmed.  He told me to continue wiping her eye with baby shampoo to prevent another infection.  He said if she gets another major infection we should consider tear duct surgery.

She has had two eye surgeries for eye crossing (on both eyes) and they both were not successful.  I was determined to keep her out of surgery so I really kept up on keeping her eyes clean and trying to keep her from putting her fingers in them.

Three months after the major infection she started sneezing and showing the signs of a red eye.  I was stressed!  I did a ton of research and found that many people had success using colloidal silver in the eyes.  After researching the possible side effects of colloidal silver I decided to give it a try.  Colloidal silver is a natural antibiotic that is anti-microbial, anti-viral, anti-bacterial, and antifungal.  At normal doses it is very safe and a great alternative to many traditional medications.  This supplement seemed amazing and I was hopeful it would be the answer to her eye issues.

colloidal silver

Colloidal Silver to the Rescue

I LOVE Colloidal Silver

Once I discovered colloidal silver we reduced the duration of the redness and even prevented most major infections from coming on.  I even started using colloidal silver to help shorten the duration of colds and flus for our whole family with great success.  I love colloidal silver but sometimes it was still not enough on her left eye.  If I do not catch things quick enough, because life is crazy sometimes, I still have to do the antibiotic drops.

The good news is, if I do not notice the redness in time I can treat with a combination of colloidal silver and antibiotic drops.  If for instance she has gone to school with red eyes that I did not notice in the morning rush, I can immediately put colloidal silver in the eye when she gets come.  I then put the antibiotic drop in at bedtime then treat with the silver the whole next day and it usually resolves.

To Little, Too Late

Almost 3 years after the major infection I had successfully stayed on top of her chronic eye infections with the colloidal silver.  I only needed a doctor once to get a refill of the drops for the one dose at night when needed.  The occurrence of red eyes and infection reduced during this time period to one to three per year (down from 3-6).  I assumed she was starting to outgrow the issue and I became a little lazy about jumping when she was slightly red.  BIG mistake!

Work was a bit crazy and I was distracted by that stress along with preparing a Minecraft birthday party for our son in 10 days.  I was not on my mom game and I missed the early signs of an eye infection before sending Kairi off to school.  When I picked her up from school the teacher told me she looked like she was getting an eye infection.  I figured I would put silver in when I got home then the antibiotic drops before bed and she would be all better by morning.  I was WRONG!

She woke with worse crusting, swelling, and redness than when she had the last big infection.  I was horrified by how bad it was and immediately called her pediatrician to get an appointment.  At the pediatrician’s office I described the previous infection, showed her a picture and explained that she did not have orbital cellulitis and was successfully treated with oral antibiotics and drops.  The doctor gave us the same oral and drops that the doctors prescribed for the last infection.

Morning eye infection

Morning eye infection after cleaning it off

Asshole Doctor’s Office

The next morning her eye was drastically worse and I was very concerned.  I called the pediatrician’s office right when they opened.  They were full and were leaving early at 2pm since it was a Friday so they could not see her.  I explained the seriousness of the situation and the nurse said she would have the doctor call me.  An hour later I had not heard from them so I called again.  I explained that in just the hour since I last spoke with them her eye was worse and she needed to be seen right away.  They again said they would have the doctor call but after two more hours they had not called.

Eye sealed shut from infection

Eye sealed shut from infection, 5:30 am

I called their office again and asked to speak to the head nurse.  I explained how angry I was about the situation and asked if there was anyone from the office could see her.  She told me she would speak directly to the doctor herself.  I told her they needed to call in a different medication ASAP because the medication was not working.  She assured me she would have the doctor call right away.

By 2pm Kairi’s eye looked like she had been in a boxing match.  I was furious and almost got in the car to take her to the office but decided to call one more time.  The head nurse was rude and told me to go to the ER because the doctor was too busy.  I was pissed that they had put us off this long and now decided to send her to the ER when we could have went before things got this bad.

Chronic eye infections

Continued eye swelling, 2:20 pm (9 hours later)

It REALLY Still Gets OLD!

I had that bad mom feeling, you know the one in the pit of your stomach!  Everything this time felt worse than last time.  Still seething at the pediatrician’s office for putting us off I was worried that we turned the corner towards serious.   This could possibly could have been avoided if they acted quickly like I asked them to.

I decided to head to the PCH Urgent Care again because getting them to refer you to the ER speeds things up considerably.  The doctor on call freaked a bit when he saw her eye but this time I was just as freaked as they were.  I explained what had happened 3 years ago and that it did not result in a diagnosis of orbital cellulitis.  I told them that I was worried it actually was orbital cellulitis this time.  They were equally concerned and gave me the fast track sheet to go to the ER.

At the ER we went through the same round of unnecessary questions and the prying about vaccinating started.  I still had leftover frustration from the pediatrician’s office not helping so I was on edge.  Just like 3 years ago, this line of probing and shaming gets so OLD I just want to scream!  It did not go over well this time, I was not taking any shit and did not play nice.  I strongly explained that she needed to be seen by the head doctor right away and I had no interest in getting “educated” about vaccines.  They sensed that I was not messing around and actually honored my request.

We quickly saw the head doctor in the ER and he decided to admit her because of how serious as the eye looked.  Being admitted always speeds up the process of the testing when things are serious.  We got a room and a CT scan within the hour.  They confirmed she had the beginnings of orbital cellulitis this time.  The infection had made it to the back of her eye socket.  The other eye was also becoming infected.  This type of infection needed aggressive treatment with IV antibiotics, I agreed and they were started within the next hour.

FAILED Again!

As they released the IV clamp to allow the antibiotics to flow I had my usual tinge of regret or worry.  I hate to have her on antibiotics but always remind myself that I am also grateful that such medications exist.

They were able to get a dose in before 5pm and another 6 hours later.  The night shift doctor told us we should see a significant improvement by morning.   If everything looks good we would only be here for two or three days.  I of course pushed things and said if things were going well I wanted to take her home tomorrow.  We negotiated to making the decision based how things looked after the lunch dose the next day.

The next morning I woke expecting her eye to look much better, but it was not any better.  The swelling had actually moved down her face into her cheek.  The day shift doctor said the antibiotic was failing and put her on a stronger antibiotic.  This was the fourth antibiotic to fail in treating this infection.  I had used the drops and oral antibiotics prescribed by the pediatrician.  I also used the antibiotic gel the doctor gave us last time this happened with no improvement.  The IV antibiotic was failing so they wanted to give her an antibiotic they give cancer patients who get infections.  I of course make sure this is necessary by asking more questions than most doctor’s want to give answers to.  This doctor was very respectful, kind and patient.  She said she would ask as many questions were it her child.

Orbital Cellulitis treatment in the hospital

Orbital Cellulitis treatment in the hospital

Family Visit

Based on the doctor’s gentle approach and her tendency towards minimal treatment, I trusted her suggestion and agreed to the stronger antibiotics. Of course this meant she needed to stay another night.  We would evaluate her the next morning and hopefully go home.

My oldest daughter Teienna, came to visit and brought us a treat from the nearby vegan restaurant.  It was a nice visit, she really helped us destress and laugh a little.  We watched my first view of 21 Pilots and I fell in love with their music and so did Kairi.

We took a selfie to remember the night and after looking at the photo I noticed Kairi’s eye looked different.  It really did not look better but the swelling looked more even.  I felt like we were on the right track with the new medication and was hopeful.

 

daughter has orbital cellulitis

Teienna visiting us in the hospital

Finally Getting Better

By the next morning she had received her third dose of the antibiotic.  The left cheek and eye swelling was finally getting better.  I of course pushed going home right away.  The kind doctor said that if it looked better by lunchtime she would send us home with oral antibiotics.  I was excited because not only did I want to get her out of the hospital (and the germs that live there), I wanted to make it home for our son’s birthday.

That afternoon her face looked drastically better and she no longer had drainage or crusting.  The swollen skin around the eye was becoming wrinkled but looked better.  Her cheek was also getting smaller and was not hot to the touch like it had been.

Treatment for orbital cellulitis

Her eye is looking better after the antibiotic treatment

The doctor cautiously let us go home because she trusted my judgement to come back if things got worse.  We made it home two hours before my son’s birthday party.  We all had fun and Kairi was happy to eat birthday cake and ice cream (vegan of course).

Tear Duct Surgery

Three days after being discharged I took her to the ophthalmologist. Her eye looked almost normal by then so I brought a picture.  After seeing the picture he said it was time to put tubes in to open up the tear ducts.  He said the surgery should greatly reduce or even eliminate the infections.  I informed him that were moving out of the country in five months so it needed to get done ASAP.

Day of tear duct surgery

Day of tear duct surgery

She had surgery on June 14, 2016 and it was a quick and easy processes.  The doctor placed the tubes in the top tear ducts of both eyes.  We decided to leave the tubes in as long as possible.  Hopefully longer would create scar tissue that results in bigger ducts.

The tubes came out October 26, 2016, 4 months after placement.  Worked out great because it was nine days before moving to Costa Rica.  The doctor said the tubes came out well and he suspected the surgery was successful.  He gave me the name of a doctor out of San Jose with the same medical training.  San Jose is 3 hours from where were moving.  He suggested we see him at least once a year.

I was happy this whole issue was behind us and looking forward to clear eyes and no more chronic eye infections.  I was wrong, sort of…..

To Be Continued in Costa Rica…..

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Categories: Down syndrome, Health

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