Owen’s History – Part two

When Owen was almost 3, we started an elimination diet to see if we could figure out what exactly was causing his itchy skin.  We started with only lamb, apples and sweet potatoes.  We found he was sensitive to the coconut milk he was drinking and also seemed to be sensitive to his gluten free bread which I assumed was the yeast. We made progress with the diet but he has a delayed reaction to foods so we couldn’t pinpoint what was causing the most trouble. At this point, he had sores on his legs, feet, wrists and fingers.

In May 2013 (age 3) we took Owen to an allergist in Wisconsin to start sublingual immunotherapy.  We found his environmental allergies seemed to improve over the summer on the immunotherapy. Less congestion was noted but no improvements in his skin.  In late August 2013, we went back to this allergist and had all allergies (food and environmental) tested again.  Improvements were shown in his environmental skin prick tests and new foods were tested.  This time, rice, tomatoes, potatoes and yeast came back as a high allergens for him. It seemed as if everything we ever tested was coming back positive.  I know there are a lot of false positives with allergy testing but at the same time we really didn’t know what to do at this point.   The allergist was alarmed by the open sores on his legs and recommended that we see a dermatologist.  We told him that his sores weren’t healing with the steroids and seemed to be moving to parts of his body where we had never used them in the first place.  Although we did not know at the time, this was a sign of topical steroid addiction.  The sublingual drops seemed to be our only hope at this point.  The allergist increased his dosage of the immunotherapy drops.  This new dosage seemed to be too much for Owen.  He was itching uncontrollably after taking them and I think it was just too much for his compromised immune system to handle.  I tried alternating his old dose with his new one to gradually increase his tolerance but he still itched like crazy.  The allergist also felt that Owen probably has a build up of yeast and prescribe fluconazole, vitamin D and probiotics.

Fingers from Sept 2013

Open sores from Sept 2013

 We began taking the fluconazole in Sept. 2013 but a few days later he  developed cellulitis in his right leg which spread quickly.  This was our worst nightmare related to eczema.  Although we are very fortunate that he does not get an anaphylactic response to foods his skin issues do get severe at times and I am always worried about a bacterial infection spreading.  I took him to the doctor as he had a red spot on his leg that was spreading and was in a lot of pain.  As the day went on he was unable to put any weight on his leg.  The doctor immediately sent us to the hospital. He received IV clyndamycin for 4 days.  He was in so much pain and the doctors were worried the infection had spread into his hip joints.  We had an ultrasound and an x-ray as well as different types of blood tests but ultimately is was determined it had stayed in the skin and the antibiotics were working. 

Hospitalized with cellulitis

However, even with the super antibiotics, his open sores on his legs did not heal so our pediatrician prescribed oral Bactriban antibiotic for the infection as he suspected MRSA.  We were also given a prescription antibiotic cream. Neither of them seemed to help heal his legs either.  About  3 weeks later Owen got Croup which developed into a respiratory infection and he was hospitalized again.  This time he was given prednisone for the wheezing.  All of the doctors continually mentioned that this could be the start of asthma for him as he was meeting all requirements for the atopic triad, allergies, atopic dermatitis and now wheezing.   As we were in the hospital we asked every doctor that came in to look at his legs and see if anyone could help us.  Everyone concluded that he did not have MRSA which was good but ultimately he seemed to have spreading eczema that no one could help us with.  One doctor actually said in a really loud voice to Owen as if he was hard of hearing, “Owen,  you have to just stop scratching and your legs will heal.”  

We were so frustrated at this point. How could no one help us?  Each doctor said that he would probably outgrow this.  But how does that help us get through each day?  We had a dermatologist appointment the next week but I knew it would be the same frustrating type of appointment.  The dermatologist was actually the worst appointment that we have gone to of all of our specialists.  The nurse immediately told us that her own daughter has eczema and that Owen will never outgrown it and that there are no options for helping with it other than steroids.  The PA came in and just gave us some samples of Cetaphil and some protopic.  When I discussed that we were trying to change his diet to help him she just stared at me and said to try the protopic.  I left so frustrated and just discouraged.  At this point we felt that we could either continue to follow standard medical care and Owen would surely head down the asthma route or we could go an alternative route and try to heal him from within.  I truly believe that skin disorders are a systematic problem that have to be cured from the inside out and no cream is going to be a cure.    I know not everyone would make the same decisions that we did but we did not want to just give up and give in to a lifetime of severe allergies and asthma without at least trying some alternative methods.  We decided that we were done with steroids as soon as we got home from the hospital in mid-October.  We would soon discover that the situation could get so much worse.