what we’ve been up to…

I have been meaning to write a post and update the blog with what we have been dealing with lately but honestly it’s been changing almost week to week that I didn’t really know where to start. Things are much more under control now so I thought I would post about our last 8 months and what has worked and what hasn’t worked in trying to help keep Nash’s eczema. Nash has has bad cradle cap, flaky skin, rashes and weeping sores since he was only a few weeks old. It took months to finally get his skin to finally calm down and we are now on a great regimen of taking one bath a day, sometimes with vinegar, then putting on one layer of a topical steroid oil, using a bit of a steroid cream on the worst areas and then doing a layer of lotion on top. Right now his hands and chin are the worst. His hands because I don’t put the steroids on them for fear he will put them in his mouth and his chin because it’s constantly wet. We have him on a dairy free diet because from all of our testing, trial and errors we believe that casein or dairy are aggravating his eczema but that has not been confirmed. We still have lots to learn but I love reading stories of what worked for others dealing with eczema so I wanted to share what is currently working for us. Although we have tried lots of different lotions, steroids, diet and formula changes etc… I am always open to other ideas of things that have worked for other people – so please share!

A list of what we have tried:

– Neocate formula – didn’t notice his skin was better and he really fought drinking this formula.

– Nutramigen – Took this formula well but it didn’t seem to clear up his skin at all.

– Soy formula – This is what we have just recently switched Nash to. He has only been on it for about two weeks so now we will start to decrease the topical steroid applications to see if the soy formula is helping.

– Wet wraps – when Nash’s skin was infected and really bad we ould wet wrap him at night and that did really help.

– Creams that we have tried: No more Xema, Cetaphil, Vanicream, Aquaphor, Cerave, Coconut Oil, Olive oil

– Medications we have tried – Dermasmooth & Westcort. Both of these steroids help and Nash’s skin still flares up even if we forget to put his derma smooth on for one day. We would love if we didn’t have to rely so heavily on a topical steroid but right now that is all that is keeping it under control.

– Allergy testing – we have tested Nash (only a skin test) for the top 8 allergens and he didn’t seem to react to any of them…which is great….but given that his brother is so highly allergic to a few foods we still wonder if it isn’t some food that is triggering his eczema.

Here are a bunch of pictures of what Nash’s skin has looked like over the last 8 months.

Test Results

Earlier this week, we met with Bo’s doctor to go over his test results. They re-tested all of the foods he had been diagnosed as allergic to after his blood test at 6 months old. We were definitely hoping for some good news but were prepared to hear that nothing had changed. The doctor compared his tests at 6 months with his 2-year-old tests and unfortunately all of his numbers have gone up significantly. This doesn’t necessarily mean that his allergies have gotten worse but it was disappointing because we definitely want to see his numbers go down. His numbers going down would lead us to believe he is ‘outgrowing them’ and/or they give the doctor more of a reason to do a skin test and food challenge. With that said, there is definitely some argument as to how much weight these numbers hold and what they really mean but because we have seen a reaction from both dairy (an anaphylactic reaction) and nuts from Bo mixed with the fact that we now know his numbers are going up the doctor believes it’s safe to say he is still very allergic and should avoid dairy & nuts. As for the eggs, those numbers did increase but are still very low – especially his numbers for egg yolk. His numbers for eggs and the fact that we have never seen an egg reaction in his two years of life led the doctor to give us the OK to slowly try to see if Bo could handle egg yolk! This was definitely the best news we received. I really feel like his little body doesn’t react to eggs, but we shall see as we slowly test how much egg he can handle or if he can handle it.

Brief summary of his test results and what is he is allergic to listed in order of highest to lowest levels.

Casein (a milk protein)

Whey

Cows Milk

Peanut

Egg White

Almond

Walnut

Cashew

Egg Yolks

So, other than the possibility of having egg in his diet, which would be huge, nothing else will change. We will still need to be dilligent about keeping Bo from coming into contact with dairy and nuts and will continue living this more ‘high alert’ lifestyle we are starting to become accustomed to. Bo will be tested again next year as long as he has no major reactions or changes between now and then.