Our Personal Story, Part 1

Bella at 3 months old - a "good" day after using steroid creams for a month

I have told you that my daughter has severe eczema and that part of her treatment plan is to avoid foods with the top 8 allergens.  That’s the short story.  Today I am sharing a little bit of our long story.

In 2007, Bella was born a healthy 10 lbs 3 oz.  Everything besides her weight was normal. My husband, 3 other children, age 7 and under, and I were feeling incredibly blessed by this “surprise” baby.

Bella was about 6 weeks old when her beautiful baby skin turned red and angry looking. When it started oozing, I took her to see the pediatrician.  She was diagnosed with infected eczema.  The doctor prescribed a round of oral antibiotics and oral and topical steroids.  Since the eczema covered her entire body, I was to coat all of her skin in the steroid creams twice per day.  We were to follow up with a dermatologist.

A few weeks later, the dermatologist confirmed the eczema diagnosis.  The skin was no longer infected.  We were to continue the steroid creams and use topical antibiotics as needed.  The topical steroids kept the rash from taking over her body, but angry patches were still showing up. You can see the eczema pushing through the steroids in the photo above.

As Bella developed motor skills, she started scratching.  I kept newborn mittens on her hands 24 hours a day.   At night, I’d swaddle her like a newborn, hoping to keep her hands away from her face.  But as she grew, she got better and better at wiggling free and scratching.  At first she would wiggle out of the mittens and scratch her hands, forearms and elbows under the swaddling blanket.  Later she’d learn to pull her arm out and scratch her forehead.  It didn’t matter how short I kept her nails, she always had scabbed up scratches on her hands, arms and face.

We kept the swaddling up as long as we could, because, though it didn’t stop the scratching, it did help to slow the damage the scratching was causing to her skin. Eventually, all of her crib sheets and pajamas were stained with blood.

When Bella was about five months old, I made an appointment with an allergist. A scratch test showed allergic reactions to egg, dairy and soy. I was breastfeeding Bella, so she and I eliminated egg, dairy and soy from our diets.

I honestly can’t remember if the diet change made a noticeable difference in her skin.  I do remember that we were still completely dependent on the steroid creams. The steroid creams were helpful, but they still weren’t keeping all of the itchy patches away.

Bella's First Birthday

 

When Bella was about one year old, we found a new dermatologist.   He explained that she had “severe eczema.”  Because of the severity, it would be unlikely that she would outgrow it completely, but she would likely outgrow the severity of it.

He started her on an antihistamine called Atarax or Hydroxyzine.  He said it had been around a long time, and he felt very comfortable prescribing it to our baby.  He said it was specifically good for skin itching.  He was right.  It was wonderful.  The scratching slowed significantly when it was in her system, but it still wasn’t the magic pill I was hoping for.

There were parts of the day where the eczema didn’t bother her, or maybe she was just able to ignore it.  Then, out of nowhere, she’d drop to the floor, rip her socks and shoes off and scratch like a crazed person.

We called these crazed moments “itchy fits.”  I’d immediately drop what I was doing.   I tried to restrain her from digging into her skin while simultaneously rubbing her “itchy spots” in an effort to provide some comfort.  There were lots of tears, screaming and fighting.  These violent fits usually lasted about 30 minutes.  We found it most helpful to find some distraction.  Dora the Explorer became our best friend.

Sometimes these itchy fits would happen in the most inconvenient places.  The worst were the middle of the grocery aisle or the middle of a parking lot.  She would scream and cry as I’d try to scoop her up in my arms and comfort her as we rushed to the car.

Bella woke up from a nap like this. She had been rubbing her chin on the sheets.

 

Bella used whatever she could find to get relief.  As a baby, she’d rub her hand or face on her sheets until her skin was raw and bleeding.  I still find her rubbing her hands and feet on the carpet until they are raw.  Sometimes she runs her hands along the collar of her shirt so that the collar rubs between her fingers.  Not only are her sheets and pajamas blood stained, but the collars are completely stretched out and ripping at the seam.

She learned that if she wanted to scratch freely, she had to hide.  I hated that she felt like she had to hide from me, but I couldn’t let her hurt herself.  I had to keep her in my sites at all times.  If it got quiet, I knew she was hiding and hurting herself.

As you can imagine, all of this was heart breaking.  I felt so helpless, but nothing broke my heart more than when she started pulling her hair out. I guess the pain of pulling her hair out felt better than the constant pain and discomfort the eczema caused.

Easter 2010. We had taken Bella off steroid creams and were pushing natural remedies.

Over the past five years, we have seen multiple pediatricians, allergists and dermatologists.  The base of their treatment plan was always the same: prescription strength steroid creams and anti-histamines.

We tried every holistic approach we could find including the GAPS diet, homeopathy, nutritional supplements and UVB therapy. Some were helpful, some were not.

Bella with her cousin. Back on prescription steroid creams, the eczema is less obvious. Her hands and feet are still incredibly painful.

 

Is she any better?  Yes and no.  We have seen some improvement through diet change and supplements, but the truth is most of her symptoms are simply masked by steroid creams. Thankfully, she no longer pulls her hair out and she can survive most days without an “itchy fit”.  Night times are a different story.

To be continued…

Please click here to see Part 2 of Our Personal Story.

You can read all of the posts in the Overcoming Severe Eczema, Food Allergies and Night Terrors series here.

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42 Responses to “Our Personal Story, Part 1”

  1. Oh nancy, so heartbreaking! It beings tears to my eyes b/c i know this struggle so well. To try SO darn hard and still not have all the answers is beyond frustrating…and when it involves your child it is even more excruciating. i hope this 2 week program can provide some directing, some relief, some answers. You’re in my thoughts!

  2. Lisa says:

    Derma E has a Stop Itch Cream that is amazing. When I have eaten something I’m allergic to maybe something with an artificial sweetner, I break out, itch and scratch uncontriollably! This cream is amazing and works better than steroid creams. With me, my best option is to eat real food: Fruits, veggies and free range meats. Best wishes. Please contact me if you want to visit. I’ve been dealing with this since 1995 and am now aamzazed by how good I feel. Best wishes!

  3. Oh, Nancy, this brings tears to my eyes! I remember dealing with all of these things when my son was an infant, and I can’t imagine the torture continuing for five years. Your poor baby, and poor you. I hope you are able to get some real help this time! Praying for you!

  4. Laura says:

    Nancy,

    This breaks my heart. Bella is so lucky to have such a wonderful Mother who is seeking out and researching all possible solutions and remedies-alternative and Western modalities. I hope that in the coming weeks you find the answers you are seeking. Bella is beautiful and I pray she finds relief from the itching very soon.

  5. Mary says:

    Oh, Nancy. This is heartbreaking. I am glad that the days are growing better. Praying with you that the nights will improve as well.

    • Nancy says:

      Thanks Mary! We are getting there. I have something very exciting coming up that I’ll share about next week. It brings me hope!

  6. Nancy,

    She is such a beautiful little girl! It’s so good to know more of your story. I pray that you find peace and comfort when you can’t find that “magic pill,” and perhaps that relief will come very soon. We all know, all too well, the depths that we would go to remove the pain and suffering from our children. I’m looking forward to reading the rest of your story and hear how things go at the clinic. You’re doing your best…keep it up!

    Michelle

  7. daisy says:

    Hope Bella is feeling better now. We have been dealing with eczema for years too. Don’t give up until you find what works for her. It can be done! Best wishes…

  8. pam says:

    praying for you….

  9. Eny says:

    Oh, my god, poor little girl! I can only imagine what she’s been through and how bad is must have felt to want to itch those scars yet she wasn’t allowed. Or it would bleed. Poor thing, my heart is breaking for her.
    My little girl developed eczema whe she was a couple months old, and it got pretty bad. That’s when I cut dairy, eggs and glutein out of my diet. It kinda helped but not really. Then I started her on Carlson’s cod liver oi…that HELPED BIG TIME! every day she got her dose and her skin cleared up in 2 weeks. I gave her probiotics too. The I gave her a bath every day for at elast 10 minutes in warm water and bakind soda!!!! That helped too, but I heard epsom salt would do the trick too. Plus I used california baby lotion on her, specifically for eczema, after every bath. Only dressed her in 100% cotton clothes and I washed everything in hot water only. I don’t know what did it or what was no help at all, but her skin is smooth and spotless now that she is 8 months old. She is still breastfed and her diet is limited to carrots, butternut squash, apples (everything organic) and chicken broth and chicken, brokkoli and banana…basically all the safe foods only. I once gave her blueberries and her rash got sooooo bad that it was really painful to watch. Well, lesson leard! I am waiting to hear the second half of the story!

    • Nancy says:

      I’m so grateful you were able to get it under control Eny! I saw the pictures of your daughter on your blog and she is beautiful! We have tried a variation of everything you mentioned except the California baby lotion. Most of those things gave us a little baby step in the right direction but none of them made a huge difference. We are getting closer. We have an exciting opportunity coming up soon. I’ll share more about it next week.

      • Eny says:

        I can’t wait to hear about it! I love your blog, by the way! I really hope that you will be able to win this battle with this nasty skin disease. I hope you will be able to find what triggers it and eliminate it.

  10. Mia says:

    Wow, it is so heartbreaking and comforting to hear someone else who is going through the same thing. My son is 4 and there are morning where I find his pj’s and sheets stained with blood because he was scratching in his sleep. He cries in his sleep too because his skin hurts. It amazes me how happy and wonderful these kids can be and still live in agony. We wish you the best of luck as you go down this rough road, know that You, Bella, and your family are not alone.

    • Nancy says:

      Mia, That is exactly why I wanted to share my story. It is so rare to find other people who know what you are going through. When you do, it just makes you feel a little better.

  11. Jean says:

    How very sad to see a small child suffering so much. I’ve had psoriasis for many years now and after reading the book: Healing Psoriasis by John Pagano, I’ve eliminated all nightshade family veggies from my and my son’s diet. Seems to be helping him a lot. As you well know, it’s an inside job to treat this. I hope Bella is soon relieved of this painful condition.

    Love to your beautiful family. Jean

    • Nancy says:

      Jean, I know very little about psoriasis but I know it’s terrible. That is very interesting about nightshades. It’s interesting how everyone is so different. Thanks for leaving an encouraging note!

  12. April says:

    My goodness! We go through the itchies here, but nothing like that. We all have really sensitive skin that gets worse during allergy season. I tell my two itchy girls, “Stop scratching!” I hold there hands. My second child gets secondary infections from scratching too much all to often. We take baths in baking soda, use coconut oil on our skin and I found Arbonne products to be very helpful. I can’t buy any store bought lotions or shampoos. When my second child was about 2 1/2 years we went to an allergy specialist and I shared my concern about using steroids on her skin so often and he prescribed Elidel which worked as long as we were using it (her skin would get really rough). Then someone introduced me to Arbonne which was a huge relief for her skin, but seemed pricey. Over the years I realized the cost of using something that works is cheaper than trying many things that don’t. Your right that each individual is so different as to what will make a difference. The allergy specialist also told me to give baths often to keep allergens off the skin and if they get a little bit of a tan their skin will thicken up which seems to help too (with a hint toward using sunscreen because he’s a doctor but I found that interesting). So we go through phases of using lots of hydrocortisone and then not needing it so bad. So though I don’t feel the extent of your pain I am touched and hope you do find relief for your beautiful little girl.

    • Nancy says:

      Thanks April! We have used all of the things you mentioned too. My daughter really reacted badly to Arbonne products. I’m glad you are able to control things for your child. We are moving in the right direction. We have an awesome opportunity coming up in a few weeks. I’ll share more next week.

      • April says:

        Yeah, my 3rd daughter didn’t get relief from Arbonne products but at least they didn’t make it worse. We bathed her in bottled water when she was a baby and that helped. So amazing to me that even here in one family how everyone has there own skin needs. Each child I’ve had has had more problems with allergies than the one before.

        I look forward to your post next week. Thank you for sharing your story.

  13. Great post Nancy – I know I’ve said this before, but I don’t know how you do it! Love that you shared your story :)

  14. Kathy says:

    I was cruising the web searching & somehow I came across your site, Anyway, I read your story and wanted to tell you about this. Several years ago I had allergy testing done via a blood draw. They test for anti-bodies and it is one of the most complete tests out there. It seems to cost a lot but it was worth it. They test for hundreds of foods and pollens, more than the standard ones that a Quest lab or other well known lab a Dr typically uses.

    http://www.immunolabs.com/patients/

    I did the tests because of fibromyalgia.

    I found out that many of the foods I loved and had no known physical reaction to I was actually allergic to like tomatoes ,and pumpkin, yeast,& wheat, rye, barley. That some I am allergic to I had suspected because of stomach ailments like pineapple, scallops and eggs. The most interesting point of this was that sometimes we crave what we are allergic to. It may not be only the big 8 you are thinking or only some of them and maybe some you would never suspect, like pinto beans go figure?
    I have also found I can rotate foods after they have been out of my system for awhile. And I can eat wheat if I buy organic grains, grind them myself and make bread out of it. I can tolerate small amounts of organic eggs, milk, cream and butter. I have often wondered if it is the GMO’s that have something to do with it.

    I haven’t read your entire site yet, and I’m sure you know this but it would also be helpful to have your daughter wear clothing that is pure cotton and has not been treated with fire retardants which contain bromides, they are harmful. Synthetics and some cottons contain heavy metal dyes that can really bother a child’s sensitive skin. Also, pure jojoba oil, is like a liquid wax, it is very similar to sebum of the skin can be very hydrating and soothing, unlike the petrochemical base of most medical creams.

    I hope you find relief for your daughter, members of my own family have this, though not nearly as bad.

    Kathy
    Chemistry teacher & Mom

  15. Wow. Nancy, I am just so overwhelmed by this story. I am just realizing every day anew how much I have to be thankful for. Your little Bella is so blessed to have you for a mom. I will be praying for you faithfully. I cannot even imagine how exhausting and painful this must be for you. I read this hours ago and am only now emotionally able to come back and write you a little note. My heart just aches for you and your family.

    Please know you are cared for and prayed for. We are behind you! Hugs!

    • Nancy says:

      Hi Janelle, Thank you for your kind words. It has been hard but I’m not one to look for sympathy. I probably never would have posted it but I want to include people on the next step of our journey. I’m sure you’ve had hard times as well. I really appreciate your prayers and I will take all I can get!

  16. Rachel says:

    Nancy…I am new to your site but your story resonates as my son also has very bad eczema and food allergies. It’s the allergy trifecta…allergies, eczema and asthma. It’s painful to watch, I know,I see it everyday as he claws at himself. We too have tried so many things…including a Bleach bath…never again. We think he suffered temporary tics from that one. Lately, the simplest remedy has been the oatmeal bath with added vitamin E oil. His skin feels so nice afterward and I immediately add Aveeno cream. In fact, since we started this protocol, I haven’t used as much steroid cream.

    I hope you will take a look at my blog…also on food allergies, and just anecdotal life’s quirks in general.

    Looking forward to hearing from you soon.
    Rachel

    • Nancy says:

      Rachel, I’m so sorry your son has asthma too. I know this is very common and I am so grateful we have not had this problem. Please stay tuned as we are getting ready to take advantage of a wonderful opportunity that might help your son as well. I had no idea this option was out there until a few months ago.

  17. Amber says:

    Hi Nancy,

    Thank you so much for sharing this story. I can empathize with your pain and confusion over this skin condition. Wish I could give you a big hug. Ethan’s eczema developed when he was 4 months old. It was full body. But, your sweet daughter had a much more severe case. Ethan’s eczema improved over time. He still has it on his legs, arms and back, but not in weepy, oozing patches and his face is better (now at 3 years old). Sugar is a trigger (he’s never had white cane-sugar, but any sugar irritates his skin, coconut, agave, dates, honey, etc). So interesting.

    Thanks again, Nancy! Over to read party 2…

    Hugs,
    –Amber

    • Nancy says:

      Sugar is a trigger for Bella too. I wish I could say she’s never had white sugar. I don’t buy it but people bring it over. It seems like there is always a holiday pushing more sugar. When I’m in survival mode it’s so hard to fight it. I find myself turning to coffee and sugar to stay awake. I’m hoping that after this trip, we get her well enough that I can start focusing on taking care of me again. Then maybe I’ll have what it takes to be more of a sugar Nazi for everybody in the house.

  18. Amber says:

    Whoops, I meant part 2 (not party 2). Long day I guess.

  19. Tory says:

    This is heartbreaking to see recorded. It reminds me so much of the journey we have been on with our middle daughter. She began having eczema around 4 months and it got progressively worse until she had numerous angry, weeping, red spots over her whole body. Her checks and chin were the worst – weeping and bleeding. I remember nights of her itching what seemed to be the whole night and me trying to nurse her back to sleep and then getting up for work feeling as though I hadn’t slept at all (this after cutting out the top 8 allergens even). I can understand feeling completely sapped. I can understand the crying, fighting and screaming. She is now 4 1/2 and doing so much better but only because we found help with Traditional Chinese Medicine. Conventional medicine also gave us steroids and anti-histamines as our only option – I couldn’t accept that! We found a wonderful TCM practitioner where we lived and my daughter was feed special herbs every day for about three years (which was not easy as they taste BAD!). She is doing very well now. No current patches of eczema at all! But her allergies to dairy, wheat, eggs and nuts are still present. Also, she is very sensitive to carbs and sugar. We have to monitor her daily intake of carbs and sugar very closely to prevent relapse but it is working! I hope you and your daughters journey continues on a path to health and relief. It is soooo hard to watch a child suffer but just as hard, I think, to have to be the one to try to stop the itching so blood isn’t drawn, monitor the food intake, and be so invested in the hurt of our little ones. As a mom, we just want to fix it! It is maddening when we can’t in those moments. Hang in there mama!

  20. Maureen Kelley says:

    This is so sad to see especially as a parent. You want to help your child, but haven’t all the answers. I wanted to share my husband’s eczema story. He is also an asthmatic. They are directly related. For years he went to several different dermatologists looking for a solution for his eczema. They always would prescribe steroids along with UV therapy. The steroids would work briefly and then he would be right back to his itchy red bumps. We were worried that the steroids would thin his skin from years of use. What we found over the years to be most effective for him was watching his diet because he does have a wheat allergy, no hot showers, he uses an all natural skin topical spray called Epizyn for itching and redness, and in the winter months goes for UV therapy (tanning beds) once a week. I hope this helps you on your healing eczema journey.

  21. Logan's mom says:

    I’m so sorry you’re going through all of this and poor Bella! As I’m writing this, I’m sitting in bed next to my sleeping son. He is 17 mos old and has severe eczema. I have to send new sheets to preschool with him daily due to them becoming blood stained with his scratching. When I saw the photo of Bella with the bloody face after her nap, I broke down in tears. That is exactly how my son looks far too often. We use antihistamines and steroid creams a few times a day and cannot seem to get rid of the same spot on his chin! He is allergic to eggs, dairy,peanuts, & shellfish but I’m concerned there may be more since we have never been able to get his skin fully under control (although certainly better than it was a year ago!).
    I will keep reading through your site, I just happen to stumble upon it while looking for allergy friendly crock pot recipes.
    I hope to read that Bella is doing better. :)