The Finger Incident

The Middle Finger To Be Exact

A few weeks after returning home from camping we experienced something I like to refer to as "The Finger Incident".

J woke-up that morning complaining that his hand "hoot" and was burning. As the day progressed we realized his entire middle finger was swelling rather quickly and changing color. A dark red ring began to spread across his hand as it also swelled. By this time he was screaming and crying in excruciating pain. We rushed him to another local Children's Hospital Emergency Room. Nobody knew what was going on with his hand. They were concerned about the severe swelling cutting off the circulation to his finger. They immediately started an IV and began administering steroids and antibiotics intravenously. They admitted J into the hospital, ordered x-rays and called for a consult with the pediatric surgeon.

During the night the same giant watery blisters that had formed on his foot while camping began forming on the finger. Oddly enough they first appeared as two or three single blisters along the side of his finger and then began to merge into one giant blister as they grew larger and larger. It was a fairly quick process... within a couple of hours he went from no blisters to one huge giant blister along the whole side of the finger. This blister increased J's pain and discomfort significantly. It also increased our concerns about circulation being cut off.

The Surgeon showed up early the next morning. He had the results from the x-rays taken the previous night. He reported the good news that there appeared to be no fractures, no broken bones and that the circulation in the finger seemed to be unobstructed. However, he was bothered by the development of the giant blister and the fact that the steroids had not yet reduced any of the swelling. They had outlined the perimeter of the swollen red area with an ink pen in order to track the increase or decrease of inflammation. The swelling and redness had actually increased beyond the markings from the night before. The surgeon decided he was going to lance the blister in order to relieve pressure on the finger.

The nurse came in and gave J a large dose of painkillers a whole 5 minutes before the procedure began. I asked the surgeon about numbing the area first, but they said the injections required would be just as painful as the procedure itself. They asked me to help pin J down to the bed and hold his other arm still. Through the screams and sobs the surgeon used a scalpel to lance and drain the fluid from the blister. I watched in horror as he then pinched the loose skin of the blister between two of his gloved fingers and proceeded to rip it off! It was brutal and I certainly wasn't prepared for it. I felt like offering my own middle finger up for close examination. The nurse wasn't prepared for it herself as she later admitted when she came back in to coat the wound in antibiotic ointment. Necessary or not... it wasn't an easy thing to witness.

They continued with the IV steroids and antibiotics through the night. It was frustrating to find new blisters beginning to form on the opposite side of the same finger the next morning. Fortunately the swelling in his hand had decreased enough that the surgeon no longer had any concerns about circulation and left those blisters alone.

All in all we wound up spending a total of 5 days in the hospital before the doctors were satisfied that J's hand... and middle finger... were out of danger. They discharged him and sent us home. Somehow we managed to make it through the next few months of winter without any other major complications.

Camp Geranimo

Could It Be Broken?

We did our best to manage J's symptoms through the rest of the summer. I was beginning to have serious concerns about the possible side effects from all the steroids being given to my two year-old. We endured many sleepless nights while J struggled to fall and stay asleep. He would cry, scream, kick his legs and stomp his feet for hours... his Dad spent many hours carrying him up and down the hallway attempting to soothe him. J spent hours soaking in the bathtub... there were days he wanted to take a bath every hour or so. Playing in the water was a distraction and the warm water seemed to give him some relief. Once again as the weather began to cool his skin started to clear up. The sores became fewer and further between. It was October 2012 when my mom invited us to come camping on a "family vacation" camp out organized and hosted by her stake (local church leadership). J had been doing much better and the kids were so excited to go.

The organization and planing that had gone into this trip was amazing. They had all kinds of activities for all different age groups. We had a nice big tent in a beautiful wooded area and cots to sleep on. They provided all the meals for us in the mess hall... we were all set-up and everyone was having fun.

After an eventful day we hit our sleeping bags absolutely exhausted. We awoke early the next morning to familiar sobs. J was holding his big toe and screaming "it hoots, it hoots!" (hurts). We went in for a closer inspection and found that his big toe was black and blue and extremely swollen. What could this be? It was not what I had expected to see at all. He was in a great deal of pain and wasn't able to put any weight on the foot. Could it be broken? I tried to recall if he had tripped or stumbled the day before. Had he dropped anything on his foot? I couldn't remember anything that might have broken or sprained his toe like that. We headed down to camp headquarters to have the volunteer doctor take a look.

The doctor said it was most likely a severe sprain but possibly the big toe was broken. He suggested we take the 30 minute drive into town and have it x-rayed in the Emergency Room. My mom kept the kids and we packed J up and headed to the hospital.

The ER Doctor agreed with what the camp doctor had told us. He ordered x-rays and J was given a dose of painkillers. After a short wait the doctor returned with the results. He said there were no fractures and no broken bones. He told us to keep J in his socks and shoes for the night because that would help stabilize the sprain and reduce his pain. We collected our belongings and headed back to camp.

We awoke the next morning to find that J had removed his shoe and was crying once again. I probably shouldn't have been, but I was completely shocked to find that huge blisters had formed on his big toe and under it. These were by far the largest blisters I had ever seen. I began to suspect the swelling and bruising from the day before had less to do with a sprain and more to do with all the other mysterious symptoms we'd been facing over the past several months. Draining the blisters with a sterilized needle seemed to relieve some of the discomfort J was experiencing. We bandaged him up with some antibiotic ointment and replaced the shoe. We ended up taking turns hauling him around on our hip for the remainder of the camping trip.

It's Chicken Pox!?!?

But He Was Vaccinated!

We appreciated the winter reprieve but once the weather started to warm up J's mysterious symptoms returned with a vengeance. He started developing large water-type blisters on random areas of his body. Some seemed to bother him or be more painful than others.

J also suffers from allergy triggered asthma. We were at a regularly scheduled check-up with the asthma doc when she asked about the blisters he had on his arm... I attempted to give her a brief explanation of his mysterious symptoms. She was completely convinced they were blisters and sores from Chicken Pox. Chicken Pox? I explained J had been vaccinated for Chicken Pox so I didn't really understand how he could currently be suffering from the disease. She explained that the vaccines are not always 100% and sometimes kids still end up with an outbreak... but a weaker version. She explained that this was why he only had the blisters in a few random areas and not all over like a typical case of Chicken Pox. She cautioned me to keep him away from other children for a good 2-3 weeks as he was highly contagious as long as he had blisters. Two to three weeks! That meant no play dates, no Sunday School and no day care! I was only working a few days a week at the time... but as you can imagine it was quite the inconvenience to quarantine my active toddler for three whole weeks!

A couple of weeks into J's "quarantine" it was obvious we were not dealing with Chicken Pox. The areas around the blisters were starting to swell up into the big, huge, hot, red, burning welts we recognized from the previous summer. The big watery blisters were new but the hot burning welts were the same. We paid another visit to the Pediatrician for steroids and antibiotics which seemed to be the only thing that helped. The Pediatrician referred to the lesions as "Cellulitis" which is a skin infection caused by bacteria. How or why this was happening was still a mystery.

It Wasn't Scabies

Strike Three... Scabies Was Out

We completed the treatment for Scabies as prescribed but it failed to clear up J's lesions. We wound up at an Urgent Care one evening after a particularly difficult day. J had new sores on the back of his legs that were causing him extreme pain. The doctor explained that sometimes a single treatment wasn't enough as Scabies could be really difficult to get rid of. He prescribed a second round of the Scabies treatment. After that treatment also failed to resolve the problem the doctor from the Children's Hospital called in a refill of the original prescription so we could give it another go. I'm not sure why I went ahead with the third round as I was already convinced it was not Scabies and felt this was a complete waste of time.

The Children's Hospital requested I bring J back in so they could do some more blood work and possibly another biopsy to see if they could come up with any new results. I realized at this point they didn't have any better idea than I did of what was going on. They were only guessing on which tests to run hoping to get lucky and find an answer. I declined their request for a return visit. We found ourselves back at the pediatrician and urgent care a few more times for steroids, antibiotics and even narcotic painkillers before his skin suddenly began to clear up. Surprisingly, we managed to make it through the rest of the winter without further incident.

The Children's Hospital

Sometimes... the Experts are Overrated

I really don't mean to sound jaded... I just had such high expectations for this appointment. *sigh*

The day of our appointment with the Dermatology Department had finally arrived (two months after scheduling). We made our way from the parking garage, through the enormous lobby, up the elevator to the second floor and into the beautiful waiting area.

It wasn't long before we were called back into one of the rooms. Between you and me... what probably gets oldest the quickest is having to repeat this big long drawn out story over and over again... particularly when the person I'm telling it to looks just as bewildered by the whole thing as I do. After first writing the whole history out on the medical forms... I proceeded to be asked to repeat the entire story again and again by the nurse, the student doctor (who I thought was the actual doctor), the actual doctor and then once more for a group of students that he asked if he could bring in to observe this "highly unusual case". They proceeded to poke, prod, examine and discuss J's symptoms. They reviewed the results that came back from the blood work the pediatrician had ordered. They agreed on a variety of additional blood work to be done and had the nurse come in to draw it. Then the doctor asked if I'd be willing to allow them to biopsy one of the lesions. I asked what he hoped to discover by doing a biopsy on my 18 month old. He said they would be able to determine if we were dealing with a bacterial infection, fungal infection, allergic reaction, eczema or something parasitic... he convinced me it was a necessary procedure. So I agreed.

Evidently he felt this was an opportune teaching moment and took great care in addressing his students as he prepared for and performed the procedure. I had the pleasure of assisting the nurse in pinning my terrified screaming toddler to the bed once again. They cut a chunk of tissue the size and shape of a pencil eraser right out of the center of one of his wounds. It was not a fun experience. I wasn't particularly bothered by the students at the time... however looking back now I wonder if that biopsy was more about a "teaching moment" than what was really in the best interest of my child.

We scheduled an appointment to come back in a few weeks for the results. Upon returning for the follow-up visit we were told the biopsy results had come back as "inconclusive"... completely worthless.  A new doctor examined J and decided he must have what looked to him like a really bad case of Scabies. After explaining what the heck Scabies were... he prescribed us a cream that had to be used by every member of our family. He then instructed me to clean the house thoroughly, vacuum vigorously and wash all the bedding, towels and clothing in very hot water. Besides being completely grossed out, I'm sure you can imagine my sheer excitement at the thought of heading straight home to get started on my new list of chores. Regardless, I was cautiously optimistic the mystery had been solved and J would soon be cured of his ailments. 

Where It All Began

The Cottage

It was the summer of 2010 and my family was enjoying a much needed vacation. We had decided to haul the whole family to a beautiful lake in Northern Michigan so we could visit my grandma at her cottage (aka "The Cottage"). I was 5 years old the last time I had made the trip to the cottage, so I was very excited to be there. Our youngest son "J" was 15 months old at the time.

I packed a bottle of sunblock that also contained insect repellent for the kids... since I figured we'd run into our fair share of insects staying on the lake. However, I regret to say, I wasn't very diligent in applying the kids with lotion as often as I probably should have. The weather was much cooler than the scorching hot Arizona summers we were used to, and we seemed to find ourselves in shaded areas more often than not. As a result the sunblock... and therefore the insect repellent... was not a high priority to any of us.

A couple of days into the trip and early one morning... J woke-up crying and rubbing his lower back. I lifted his shirt to find a baseball sized, bright red, hot-to-the-touch, burning welt. There was a dark red ring around the perimeter of the welt and a small whitish bump in the center that made me think he must have been stung by something. Our daughter has an allergy to bee stings and I figured this must be the case with J as well. We searched for a stinger but found nothing. We immediately gave him a dose of Benadryl and Motrin (Naturally I had packed the entire medicine cabinet to calm my motherly paranoia of being unprepared) and an ice pack to hold on his wound. I fully expected this to be the end of all the sting-related drama... little did I know it was only the beginning.

The Motrin did little to ease the pain or swelling and the Benadryl did absolutely nothing to calm the reaction. It was Independence Day and I ended up calling our Pediatrician on-call back in Arizona for some advice. In spite of all the medications given, the dark red ring around the wound was growing larger and the welt was getting bigger. J was absolutely miserable... and this in turn made everyone miserable. All the doctor could do was reassure me we were handling things correctly and to continue dosing him with Benadryl and Motrin. The only consolation was that although the Benadryl seemed to have zero effect on the wound itself... it at least had the effect of making J very sleepy. Needless to say... my poor baby did a lot of sleeping during the next several days. When he did manage to stay awake he was not a happy camper. I would have to say it probably wasn't until the fifth or sixth day that the swelling and redness finally started to decrease. It took several more weeks (like 15 to be exact) for the wound to finally scab over and heal (2 years later and I can still see the scar on his back).

I had no idea what was going on. I started to wonder if he had possibly been bitten by a deer tick and contracted Lyme Disease or something even worse. I was very bothered by the fact that the Benadryl didn't seem to help at all and that many weeks later the wound was smaller but still there. Maybe this wasn't an allergic reaction after all. What's more is that since we had returned home, several more of these sores and welts had started popping up on different areas of his body. He had also begun running a low-grade fever. I had to consider the possibility that this was something much worse than originally thought. I turned to the Internet for answers... but only found myself with more questions and concerns. We made an appointment and visited the Pediatrician. He was as baffled as I was... by this point the sores were starting to look more like a skin rash as there were several lesions grouped together on different areas of his body. The Pediatrician drew blood to screen for allergies, check his blood counts, and look for infections.  He gave J a prescription for antibiotics, oral steroids and a hydrocortisone ointment.  Last but not least, he gave us a referral to the Dermatology Department at the local Children's Hospital and instructed me to make an appointment. I felt relieved... surely they would have the answers we were looking for.

Introduction

It has been my intention to get this blog started for the past several weeks.  I want to use this site as a personal journal of sorts to share our journey and discoveries.  Our youngest son was recently diagnosed with Skeeter Syndrome.  While I agree it has a funny name, I can assure you the symptoms of this severe allergic reaction are nothing to laugh at.  It has been quite a ride and I can't help but think there is at least one other parent out there who is trying desperately to solve the same mystery that has plagued us over the last two years.  I by no means claim to be an expert on the subject and I am not medically licensed... but I do have a story to share.  Additionally, this is an attempt to reach out to other sufferers and invite them to share their own stories, trials, triumphs and discoveries.  I hope to share what coping mechanisms we have found to be most helpful, as well as learn new ways (hopefully better ways) to treat and prevent these reactions. I also hope this site becomes a helpful resource people can use to find links to additional information and research... I've spent countless hours researching Skeeter Syndrome on the Internet and was surprised by the lack of information available and the difficulty in finding such information.

These statements have not been evaluated by the Food and Drug Administration. Products are not intended to diagnose, treat, cure, or prevent disease.

Let the story begin...