Eczema Update

After spending our first year with Nash worrying about the possibility of food allergies, horrible eczema, steroid creams, wet wraps etc… I am feeling so grateful and so relieved that the first year is behind us and that Nash seems better and all that it seems like we are dealing with is a mild case of eczema. This is not to say that eczema isn’t tough to deal with but I think Nash has a pretty mild case and compared to my three-year olds food allergies – I’ll take the eczema any day. I am feeling this huge sense of relief that Nash can eat anything he wants, be around any food he wants and he will not die! For a while I was feeling so afraid that both of my boys would have the severe allergies that Bo does and so far Nash is not showing any signs of food allergies! I know there are many people out there who have multiple kids with food allergies and I am so amazed by your strength, patience and all you do to keep your kids safe on a daily basis.

So many of you have written such sweet comments about Nash’s skin below the pictures I posted of him as an infant and I wanted to update you all with some more current pictures of him so you can see what progress we made. If your infant looks like Nash did – there is hope. I honestly think some of it just got better with age but we also have figured out a skin routine that seems to work for us.

Thank you everyone for all your messages, kind words, prayers and encouragement.

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.

Potato Salad

One of the things my husband always says he misses eating the most is potato salad. I knew I would never be able to find a super creamy delicious recipe that compared to our old favorite, Byerly’s potato salad, but I ran across the following recipe and knew I had to try this new (to us) take on potato salad.  I could eat it every night. It was very easy to make and so tasty. It was a huge hit with the husband too – so you KNOW it’s good. My picture is not the greatest – we had almost finished the whole bowl by the time I remembered to snap a picture.

Recipe for Warm Potato Salad with Bacon and Onion.

Reaction Photos

Today I saw this series of photographs called the face of anaphylaxis. A mom of a milk allergic boy photographed how scary and life threatening a milk allergy really can be. I feel so lucky when I see this because we have never had to deal with a reaction this serious. Bo has had an anaphylactic reaction where I had to use the epi-pen, call 911 and spend the afternoon in the ER while they monitored Bo but the epi-pen made everything better and Bo’s reaction never worsened. I can’t even fathom how difficult it would be to have your child on a ventilator because of a milk reaction. That is one brave mother, family and little boy.

This series reminded me of some photos I had on my phone. Ever since Bo’s anaphylactic reaction I have wanted to make it a point to try to take a picture of Bo when he has any kind of reaction. I have to say that it is really hard to remember to take a picture when you’re in full on panic mode….but now that we have been doing this for almost 2 years I think I am starting to get better at managing my anxiety in the moment and in the last few months I have remembered to snap a picture of Bo once I knew he was getting better because the Benadryl appeared to be working. I thought these photos would be handy for a few reasons but one main reason I wanted to have them was so that I could show other care takers what to look for or what a reaction can look like for Bo.

The photo on the bottom right is a NORMAL/NO REACTION photo of Bo so that you have something to compare the other photos to. These were all pretty mild reactions and were just treated with Benadryl. We also have NO idea what caused any of these reactions. If it’s hard to tell in some of them his eyes are red, bloodshot and his nose is running…some of the first signs (along w/hives) that he is having a reaction.

Nut-free Granola

This is my latest obsession. I have never made Granola before but thought I would give it a shot after having a hard time finding a really good nut-free option. I added sunflower seeds to mine and put in about twice as much coconut. I just made my third batch. It’s sooooooo good! I’ve been eating it just with some rice milk in it, by the handful and in coconut yogurt – all delicious.

Recipe for Nut-free Granola.

dairy-free and egg-free monkey bread

I made an awesome dairy-free, egg-free and nut-free monkey bread today – thanks to a great blog that I follow, Amandairy Free. The hardest part was tracking down the rolls of biscuits that did not contain dairy. I ended up finding biscuits at Cub Foods – they were the Cub brand biscuit (Pillsbury biscuits all have dairy in them). I followed this recipe on Amandairy Free blog but I changed up two things…I left off the nuts because Bo is allergic and left off raisins because that just didn’t sounds great to me and I added a couple of scoops of dairy-free vanilla ice cream (learned that one from my mom)! I hope you try this and enjoy it as much as we did!

EpiPen

I will be the first to admit how scared I was of the EpiPen. I never wanted to have to inject something into my sweet little boys leg and I had no idea how I would ever do it. Well, that horrible anaphylactic reaction happens and let me tell you that you don’t even think twice about it, you will do anything to help your poor child who is struggling. For me, our one anaphylactic reaction has taken the fear out of the EpiPen for me but for those who haven’t had to use it yet, here is a great read from Missy – Marketing Mama. Missy has kind of been a food allergy mentor for me. I started following her on Twitter a while back and we finally met this year at a food allergy fair. She is an amazing mom and does so many great things for the food allergy community. She accidentally injected herself with her daughters EpiPen when she thought she was showing a friend how to use the ‘Training Device.’ A great learning experience for us all! Please read.

How I accidentally injected myself with an Epipen – by Missy of Marketing Mama

photo from Missy of Marketing Mama

Dairy Free Mac n’ Cheese

Today I attempted my first dairy free mac n’ cheese for the little guy. I used Daiya cheese and started off with this recipe but it was lunch time and I wanted a quicker and less fancy recipe  so I just ended up mixing Daiya cheese, Earth Balance butter and So Declicious Coconut milk until I got the right consistency.

Medpax

A couple of weeks ago when we were at ECFE one of the teachers mentioned that they gave the kids goldfish for snack but that they didn’t give any to Bo. She said this to me pretty nonchalantly and it was at the end of class as we were trying to gather the kids, coats, all their stuff and head out the door so I was rather distracted and it didn’t fully sink in – the fact that she just said that other kids were given goldfish at snack time. Then I left with Bo, walked down the hallway and noticed he was rubbing his eyes and one of them was bloodshot. By the time we made it across the parking lot and into the car he was sneezing and rubbing his eyes….that’s when the one teachers comment finally sunk in – Bo was at the same table as other kids who were eating goldfish (all goldfish contain dairy) and he must be reacting to that. Luckily I was able to react right away, gave him Benadryl, took him home and gave him a bath and the reaction calmed down. I was frustrated and disappointed because we had so many successful weeks of being at ECFE and being reaction free and I just felt totally bummed that this happened. I was conflicted about what to do because honestly it just sounded so overwhelming to have to call the teacher, ask her about the goldfish and explain to her again that Bo is so allergic to dairy that he can’t even touch it. After discussing with my husband I knew it was best to call the lead teacher to discuss with her, plus, I wanted to do another session of ECFE and was hoping to take class with the same teachers because I had felt so good about how they had handled his allergies. When I called and spoke with her she did say that she was giving other kids goldfish and she was soooo sorry because she didn’t realize that Bo couldn’t even touch/be around dairy she just thought he was safe as long as he didn’t ingest it. I am not trying to blame the teacher at all and I know she feels absolutely horrible but this was a good reminder for me that I need to be really clear about Bo’s allergies, his sensitivity to even touching those foods, and that I maybe need to talk about it or bring it up multiple times so that his caregivers do not forget. I know I explained to the staff that he was allergic, even to the touch, but I also know that those teachers have so many kids with so many different needs and that it’s a lot to remember each kids specific situation/need.

I spoke with this teacher again at our class today and asked her for advice/suggestions on things I could do when I am leaving Bo in the care of others outside of our house – the other big concern I have right now is leaving him in the sunday school at church. I asked if it would be helpful if I put a sticker on him every time that listed his allergies, my thought on this was that if an adult saw that he was sneezing and rubbing his eyes and then noticed his sticker maybe it would trigger them to call me or it would just be a reminder for them that this is the little boy with the severe allergies, his teacher thought this would be a good idea, and she also said to me “don’t be afraid to scare the hell out of the teacher!” I was sort of relieved to hear this coming from a Teacher. I never want to offend or bombard someone by telling them so much information but I am realizing more and more how much I need to constantly remind people and talk about Bo’s specific needs. She also suggested always leaving a written action plan. This prompted me to look online for other action plans mom’s have created for their kids and the ones I was finding were almost too detailed and too much information for someone to sort through at a time of panic or in an emergency . I just wanted something basic that was very clear and easy to follow. I think I found just the answer and I am feeling so good about having this product to leave for those who are caring for Bo. Medpax – what a great idea! This product is a container that will hold all of BO’s medications that we keep with us at all times (Epi-pen, Benadryl & Inhaler) and also has a very simple and clear action plan along with Bo’s picture on the front of the case.

If you have a food allergic kid and have a different ‘action plan’ that you leave with caregivers – what do you use? I would love to hear how other people handle this. Has anyone used a Medipax. I’ll have to write again after we’ve used it for a bit and will let you know what we think.

Coconut Nog Milkshakes

We have a new favorite holiday treat in our house! We just mix together Coconut Nog and Soy/Coconut or any kind of dairy free ice cream. A perfect dairy free, egg free and nut free holiday milkshake. Have you tried to make milkshakes with the chocolate mint? We have to try that next.