During our first month off of steroids we did not know what was causing Owen’s sudden changes in his skin. Although Owen had always struggled with allergies, this was so different that we were at such a loss as to what we should or could do for him. I am not sure of the exact date that we stopped using steroids but it was sometime in the middle of October. As Owen had just come off off Prednisone, his skin was looking really good.
Still on oral steroids in this picture
It was within a few weeks after stopping the steroids that he just took a nose dive. We had not made any changes to his diet and we could not pinpoint any triggers. He began to itch uncontrollably. He has always been itchy but this was just different. It was non-stop and his scratching was so fierce that he just began to tear his skin away. By Halloween he was in such a bad place that we were terrified of another bacterial infection as his wounds were so big and all over his body. These pictures don’t really even show how badly he actually looked at the time. His face began to flare and I started to get calls from preschool several times a week to come pick him up as his fingers or legs were all bloody and oozing.
Fingers during the first months. They continually oozed fluid.
Face starting to flare
Backs of his legs and heels
Fingers oozing
His skin care routine became so time consuming as we were trying to keep his open wounds covered. We were using a several boxes of band-aids everyday. We put duct tape over the band-aids on each finger as it was the only method we could find for him to stop tearing at his fingers. At night we would often wrap his legs in gauze under his footed jammies and then we duct taped socks onto his hands. He would wake up multiple times a night and his socks on his hands would be bloody from scratching through all the band-aids. We would re-apply all the band-aids and duct tape multiple times a night. We finally just started sleeping with him for awhile to keep him from scratching so hard.
We also noticed that he was so tired all of the time. Owen had stopped napping on a regular basis earlier in the summer but he began to need them again daily. He had no energy to play or run around like a 3 year old. He would just ask to sit on the bench at the park. Our older son turned 6 right around this time and had a party at an inflatable jumpy house-type place and Owen spent the majority of the time sitting in my lap. He started to act out much more than normal at this time too. I’m sure he just felt miserable all of the time. It was so heartbreaking to see our 3 year old who normally has endless energy be so wiped out all of the time.
We started to see a new functional medicine doctor at the beginning of November. This was the first time that we felt that someone really listened to our concerns about Owen and wanted to try to find out what was causing his problems and actually heal his body versus just putting a “band-aid” on his skin issues. The doctor wanted to do several tests to try to determine the main areas that were causing the most harm in Owen’s body. He recommended a SpectraCell test, a comprehensive stool analysis and a allergy test (ELISA ACT). The SpectraCell test measures the function of vitamin, minerals, and antioxidants within a body’s white cells. The stool test was used to detect any parasite, bacterial infections, yeast infections, markers for intestinal permeability (leaky guy syndrome), and gut inflammation. We started right away on the blood tests for the SpectraCell test and the Allergy test. We had problems getting the quantity of blood needed for the allergy test and eventually decided to wait on that one. Owen is just really an amazing kid. He has been through so many tests already. At the age of three he had already had 5 blood allergy tests and 3 skin prick tests as well as all of the IV’s and additional blood test performed during his two hospital visits. Now we were asking him to do these again. Once again he was such a trouper.
Each day was such a struggle at this point. I was on the verge of tears everyday. We were up several times a night and never knew if there would be an infection the next day. It was just so stressful to watch your child in so much pain and discomfort and not be able to help him. We also have a one year old and a 6 year old who obviously need and deserve a lot of attention too. I am lucky enough to stay home with my kids and during this time we were even more thankful than ever that I could be home with Owen.
We had to wait several weeks for the results so I will write about the those during my post about month 2.
Life's An Itch 