Eli the Great: Topical Steroid Withdrawal  

I am so grateful that the nicer weather is coming, we were able to get outside quite a bit this week. We went to the park for about 2 1/2 hours the other day, when we got home Eli had a 5 hour nap! I wasn’t going to wake him because sleep has still been erratic, so if he naps we let him be. Next Wednesday we have our appointment with Dr Mark Mincolla, he has been on Dr Oz and is knowledgeable on TSW. Eli’s skin is still a mess this week. We have been doing Epsom Salt baths as often as possible.

It is so frustrating to have Eli’s skin clear one day and have him wake up the next day looking terrible. He has been really dry and scaly this week, no amount of Vaseline seems to help. His sleep has still been erratic too, most days he doesn’t nap and falls asleep immediately when we put him to bed. Two hours later he will be scratching and crying. We upped his Zyrtec to a full dose ( 10 mg ) in hopes that it would help – it hasn’t. We had to buy Eli one piece cotton pj’s to wear during the day to keep him from getting to his skin. We call it his “day suit” I can’t say enough how lucky we are that he is such a good kid. His neck is the worst of his skin right now, which sucks because we can’t cover it. We try as much as possible to stop him when he starts scratching it but we don’t always get there in time. He had slight oozing yesterday afternoon because of it. Eli is doing great with his speech, he has more words and phrases every day. He went to James’ Birthday party on Sunday at Pump n’ Jump and his skin was fine, he had a great time. I did notice that when he is active and sweats his skin doesn’t itch as much. We have 2 Birthday parties this weekend, Jack’s will be at his house and Ava’s will be at the bowling alley. I’m sure the boys will have a blast!

Click here Itsan.org

You become a parent and from day one you protect your child at all costs. Make sure they don’t fall or choke on something, keeping a watchful eye every second of the day. And then one day something out of your control takes over, something you never saw coming something you couldn’t protect them from. In that moment everything you have been doing up to this point crumbles. My baby is uncomfortable in his own skin every single day. We have days that are better than others but these last few weeks have been torture. Eli has open sores from the scratching, his biggest targets being his back & legs. Some mornings we have to peel off his sleep suit because of the oozing that occurred through the night. Every day it tears a little piece of my heart apart. He is still smiling and for that I am grateful. My Eli is a fighter.

Eli’s skin is the worst its ever been. He has open cuts all over his poor little body. He had a bath Tuesday night and I was able slough a lot of skin off to make him more comfortable. He has slept through the night 3 times this week despite his skins condition. We are so grateful for those nights. We have been doing the probiotic for a week and have seen improvements with the skin on his face. I had to cut his hair shorter because of the eczema at the base of his neck… it is a horrible home haircut and I feel bad that he has to walk around sporting it. We’ve had a lot of company/visits the last few days and Eli has been nothing short of happy. We say all of the time how lucky we are that he has such an easy way about him. Speech is really coming along, we had a meeting with Eli’s preschool team and filled them in on hos situation. We feel confident that they will care for Eli’s TSW while he’s in their care.

And he’s still smiling, God I love this boy!

We had a phone appointment with Eli’s Naturopath Dr. Rebecca on Wednesday. She told us that his labs look good and we could start him on probiotics. Nik took Eli to Healthy Appetites in Plymouth and picked up Flora Kids probiotic powder. He has taken it mixed in with his yogurt with no issues thankfully. Eli’s skin has been really bothering him this week, he has several open scratches on his legs, arms and back. He did however sleep through the night on Wednesday – first time in a long time!

Click here healthyappetites.com

Eli got a cold that came on all of a sudden Tuesday night. He had been fine all day and by 5pm his nose was running, he was coughing and had a low grade temp. We took him to Dr Walsh in the morning to make sure he didn’t have an  ear infection or strep throat. His ears, throat and lungs were all clear thank God and she ruled out Fifth’s disease. She said it was a virus and because Eli’s immune system is down because of TSW it hit hard and fast. She recommended that we get chewable vitamin C tablets for Eli to take until the warmer weather is here. We were told to lay low for a few days, which is exactly what we’ve been doing. Eli’s cheeks and face have had a flare up because of the virus, he looks terrible. So now on top of applying vaseline 6-7 times a day I’m constantly wiping his nose. He’s been really good about it, poor kid is getting used to all the fuss. We heard back from Dr Rebecca about Eli’s stool sample results, we have a phone conference with her next Wednesday at 4pm. She had also just mailed us the Barnock to start with Eli, 10 drops added to an 1/8 cup of water daily.

3/6/14 eczema flare up

3/5/14 red cheeks, swollen eye

There are so many factors that go into the day to day life of eczema sufferers. Food, clothes, scents and a host of other triggers. Here are some triggers you may not know.

Fruits – oranges, blueberries, tomatoes, lemons and strawberries and apples

Dairy – Casein in milk and milk products can trigger eczema. Avoid food such as yogurt, cheese and milk products

Wheat based products – Some people are allergic to the gluten in wheat. It’s best to avoid bread, pancakes, crackers, bagels and donuts. Cereal with oats, barley and rye can also be triggers.

 Nuts – Walnuts, almonds, cashews, hazelnuts, peanuts and pistachios all contribute to eczema. With a nut allergy this one is easy for us to avoid.

Seafood – Lobster, salmon, mussels and clams all cause flares

Egg & Soy – eggs and soy based products such as tofu and soy milk. we use soy milk because our boys have milk issues and can’t have almond or coconut milk.

Eli has a limited diet as it is, this list knocks off most of the foods that he agrees to eat. We need to find creative ways to get him to eat what he needs. It’s a constant search for foods that won’t disagree with him that he actually likes.

Detergent – We only use Free and Clear, the smallest scent will attack Eli and Kyle’s skin. We never use dryer sheets for the same reason.

Clothes – We use 100% cotton for the boys. Fleece was the biggest trigger we found, the seems on socks also bother him while he is having a flare up. Eli wears a sleep suit that we ordered from London, it’s made a huge difference. It was expensive but worht every penny.

Perfume & Cologne – We don’t wear any fragrances, Eli has always had an almost immediate reaction to it.

Cleaning products – We use Method from Target, they have some really mild choices. The bathtub is the one that concerns me most. I usually rinse it several times before the boys go in. Right now it’s easier to do sink baths, we can regulate the temp of the water easier.

Bathing Products – We use Maya’s soap to wash the boys bodies. I lather the soap in my hands and clean them with my hands rather than a face cloth. We use Mustela shampoo and have never had an issue with a reaction. Tubs go no more than 10 minutes we pat them dry and immediately load them with vasoline and put on pajamas.

Click here vivacare.com

Click here theallergista.com

Click here eczemaclothing.com

Eli’s skin week 8 – he looks amazing!

We have all experienced it, mom guilt. You want to be focused and put together and have everything under control. Let’s face it, you don’t. Some days it takes everything you have to survive the day. This has been one of those days for me. Eli has been having trouble sleeping the passed few nights and has ended up in our bed. We have a king size bed and his little body takes up the most room! He was all over me last night and I got very little sleep. Here comes the guilt… how dare I be frustrated that I didn’t get much sleep? Obviously Eli needs the sleep more than I do. He is miserable in his skin most days, when he can sleep comfortably it’s a blessing. When I made the decision to have kids I knew that it was also a decision to always put their needs before my own. I guess guilt comes along with motherhood. It’s funny no one talks about it until you go through it, it’s nothing to be ashamed of it’s part of life.  His skin is looking better this week although he has been getting flares on his face. Baby steps are better than no steps.

Eli has had a rough week. He has developed eczema patches on his face, scratching has been an issue. We cover him 6 to 7 times a day with vasoline and use a triple antibiotic when needed. We ordered a sleep suit which finally came in yesterday. Eli is such an easy kid, he put it on no problem. He was confused as to why he couldn’t get his hands out of the sleeves. We put him down to bed last night and he woke up 13 hours later! He never moved, at all. E woke up happy and refreshed, such a nice change of pace from the broken sleep pattern he had been experiencing. We also got the stool sample kit in the mail. We will collect from Eli as soon as possible and send it off to the lab to make sure his liver is functioning properly. When we get the results we can move forward with his treatment.

We have now eliminated Milk & apples from Eli and Kyle’s diet. They are 2 of the biggest triggers for eczema. Welch’s White grape 100% juice is what we are trying now, cut with water.

Eli had a flare up on his face

Loving his new sleep suit!

Kyle had his 15 month appointment today with our pediatrician Dr. Walsh. I was nervous to talk to her about TSW because I didn’t feel like I was armed with enough information. I had print outs from ITSAN and my knowledge from friends & websites. She was shocked when she saw the boys skin, I showed her pictures from the past 6 weeks of withdrawal. She had never heard of TSW before so I did my best to explain it to her before giving her my print outs. Her past files of our visits showed that I had voiced my issues with using topical steroids. Dr. Walsh is backing us 100% and said if we need anything during our journey that she is just a phone call away. It is a huge relief to have her on our side.

This afternoon we met with Dr. Rebecca Lawrence, a Naturopath in Cohasset. She basically got a rundown of Eli’s medical history and where we are at now. She wants to get a stool sample and send it to a lab for testing to make sure Eli’s liver is functioning properly. We will know when we get the results on how to proceed. She wants to use probiotics so good bacteria can take away the bad bacteria in his body. She suggested we start him on Burdock for now to take a step in the healing direction. She explained to us that Nik & I having eczema as kids has carried over to our boys and our food sensitivities have been passed along as well. We are optimistic about Eli’s skin and general health as far as working with Dr. Rebecca.

Click here  Dr. Rebecca Lawrence  lawrencenatural.com

Eli waiting for Dr Walsh
week 6 withdrawal