Archive for February, 2014

Did you know?   no comments

Posted at 3:35 pm in General

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!

Eli’s skin week 8 – he looks amazing!

 

 

Written by Shannon on February 28th, 2014

Week 8 – Mom Guilt   no comments

Posted at 7:45 pm in General

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.

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Written by Shannon on February 26th, 2014

Week 7 – Set backs   no comments

Posted at 7:49 pm in General

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.

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Eli had a flare up on his face

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Loving his new sleep suit!

 

Written by Shannon on February 20th, 2014

Week 6 – Naturopath   no comments

Posted at 12:47 am in General

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

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Eli waiting for Dr Walsh
week 6 withdrawal

Written by Shannon on February 13th, 2014

Breakdowns   no comments

Posted at 3:29 am in General

This week has been tough. I’ve been very emotional, the smallest things have set me off. I look at Eli’s skin and I know that we are doing the right thing. That doesn’t stop me from thinking that this is my fault. How could I let this happen to my little boy? I feel like I have to defend myself as to why I’m letting Eli suffer when it would be so easy to put steroids on him to “clear” his eczema. Because this is just recently recognized by the medical community I need to be ready to argue my side of TSW.  This terrifies me, I have to make the doctors understand what steroids have done to our son. I’m so grateful for my friend Pam who has been helping me along the way. She has been going through TSW with her son and has given me great advice and support.

Eli has been seeing a speech teacher since November, progress is slow. He can’t tell us what he’s going through. I feel like he has regressed since January 1st when we stopped steroids. It makes sense, his little body is overwhelmed with skin issues. Eli has come out with full sentences before, with clear and concise words. Those moments are few and far between. This week he’s been saying “I love you” a lot ( this triggered a breakdown ) we are praying that as his skin gets better the speech will improve.  Just another bump on our journey.

 

Click here  ITSAN.org

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Look at that face… He loves Dada’s boots

Written by Shannon on February 9th, 2014

Strength   no comments

Posted at 3:07 pm in General

It simply amazes me how you can be covered from your neck to your toes and be so uncomfortable and keep a smile on your face. Eli has this undeniable strength to go on about his day and act like little boys do. Where does that come from? Eli had a pretty good nights sleep, we have switched to Vasoline for the time being. It spreads easy and is a hell of a lot cheaper than some of the “miracle cures” that are out there. We are waiting on Eli’s sleep suit to arrive from London. There is only so much we can do to keep him from scratching. We just want our boy to have a fighting chance at a future with healthy skin. It sounds so simple, and for most parents luckily you will never have to give it a second thought. As for myself, I just need a fraction of the strength that E has to continue to do what is best for him.  Most days it’s hard to come by. Funny that I’m supposed to be the one teaching him in reality, he’s teaching me.

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I love this face. So grateful for his amazing spirit.

 

Written by Shannon on February 7th, 2014

Week 5 – Sleepless nights   1 comment

Posted at 4:46 pm in General

I can’t remember the last time Eli slept through the night. We have now moved his toddler bed into our bedroom. He goes down at 8pm and will sleep for about 3-5 hours before waking. The Zyrtec doesn’t seem to be working through the night. Yesterday he woke up with bloody scratches all over his body. It was horrifying to see this when I was getting Eli dressed the next morning. We are looking into getting a bodysuit for him to wear to bed to prevent scratching at night. We just gave Eli a bath and his skin looks horrendous. We just need to make it through today, as with all withdrawal – one day at a  time.

Click here for Eczema Clothing options

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2/5/2014

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Still smiling

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A rash has now developed in his diaper area

 

Written by Shannon on February 5th, 2014

TSW (Topical Steroid Withdrawal)   no comments

Posted at 9:28 pm in General

I am not a writer, just a mom who wants to share our experience with TSW.  If we can help at least one other person then it was worth it. Here is our story.

At 6 months old we took Eli to Children’s Hospital in Waltham Ma because of his eczema. We met with Dr Gellis who is a pediatric dermatologist. He explained to us that Eli had the most severe form of Nummular eczema, it shows as coin shaped chapped skin. He told us that topical steroids were our only choice in clearing Eli’s skin. He recommended that we use it twice daily to all affected areas. I voiced my opinion that I didn’t want to put it on his face and asked if it had any long term side effects. We were told more than once that there were no long term effects and it was our discretion to use or not to use it on his face. He also suggested Balnetar baths once a week until his skin cleared. We did just as the doctor told us and continued when needed for the next 24 months. Eli is now 2 1/2 years old. We have not used topical steroids as of January 1, 2014.

Recently my friend Pam shared with me her son Ryan’s story of TSW. I had never heard of it before, the pain and suffering that her son is going through made me cry. That afternoon we decided to stop topical steriods with Eli. We have just started week 5 of Eli’s withdrawal. He looks like he has second degree burns all over his body – thank God we never put the steriods on his face. Sleep is very erratic, he would wake up as soon as the Benadryl wore off. (Eli had a reaction to liquid Zyrtec so we are now crushing pill form) Nik would sleep with Eli in his room and tried to comfort him, many nights with no luck. He would still be asleep some nights clawing at his skin and whimpering. As a parent you want to always be able to comfort your child, it has been heartbreaking to watch helplessly as Eli struggles.

We started using Maya’s Wound Repair which is all natural and made by a mom in California out of her home. So far it has helped ease Eli’s pain and discomfort. We have an appointment to see a Naturopath next Wednesday. We are hoping to get some advice on E’s diet that might help. Eli has been such a trooper through this ordeal, we are ready for the long road to recovery. We will win the battle. We want to spread awareness so others won’t have to suffer the withdrawal.

Click here ITSAN.org for more info on Topical Steroid Withdrawal

Maya’s Eczema Products can be found on Facebook

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Dada and Eli at Children’s 12/2011

 

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Eli’s 1st tar bath

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You can see the eczema around Eli’s mouth

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Eli’s eczema patches 6/2012

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Eli’s belly rash from the liquid Zyrtec 1/2014

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Legs & feet covered and swollen 1/2014

Photo Jan 28, 8 23 17 PM (1)

I have no idea how he manages to smile while so uncomfortable 1/2014

Photo Jan 30, 10 57 53 AM

Most days he prefers to be shirtless 1/2014

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Nik calming Eli down 4:30am 1/2014

 

 

Written by Shannon on February 3rd, 2014