Our Personal Story, Part 2 and an Announcement!

Thank you so much for your kind words to part 1 of our personal story.  Here is the rest of the story and a very exciting announcement.

And then there were night terrors…

I don’t know exactly when all the sleep problems started.  It all runs together.  I know that my sweet Bella learned to sleep through the night like a normal baby.  In the beginning she slept right through the itching, then she scratched while she was sleeping, and then at some point she was no longer able to sleep through it.  She would wake up crying and scratching.  I’d give her a dose of the Atarax and rub her back until she fell asleep again.

After a while, just getting her to go to sleep became a problem.  Lying in bed without any distraction, the itching seemed unbearable.  She couldn’t hold still long enough to fall asleep.  The more she scratched, the more worked up she became.  It became necessary for my husband or me to kneel beside her bed, stop her from hurting herself and comfort  her.

Then it got really fun.  While we were all in a deep sleep, Bella would let out a blood curdling scream. My heart would skip a beat.  I’d run into her room and find she was still asleep.  She’d toss and turn and scream “Ow!  No Mommy!  Ow!” over and over again.

They started out as 10-15 minute episodes during which she would toss and turn.  Often it looked like she was writhing in pain as she shrieked.

As time passed, she no longer tossed and turned through the night terrors but sat up in bed and clawed at her skin. In a matter of minutes she could cause enough damage to her feet that she could not wear her shoes the next morning.  Once again I found myself kneeling beside her bed, holding her hands so she didn’t hurt herself and trying to calm her.

This is what her feet typically look like these days. They have been much worse.

 

The night terrors got worse and worse.  By the time she was three years old, it got to the point where they would last for 2 hours, sometimes more. They usually happened between 2:00 and 4:00 am.

We were absolutely exhausted.  I often wanted to cry, but I was usually too tired to do that.  I researched natural sleep aides.  We tried a couple of herbs.  We tried melatonin.  Nothing was helping.

The pediatrician felt the night terrors would go away if we could get her skin under control. So, after almost a year of no steroids and minimal antihistamines, we picked them back up.  Between the diet changes, supplements, antihistamines and steroid creams, we got to the point where daytime “itchy fits” were becoming rare.  Unfortunately, the night time was still a battle.

I was worried about her body not getting enough rest to heal itself.  I thought maybe the sleep pattern or lack thereof was a habit.  I was sure if we could get her to sleep, her eczema would take a huge step in the right direction.  Plus, I felt my other three children needed a better functioning mom.  After four years of very little sleep, I was finally ready to ask for prescription help.

My pediatrician explained that night terrors are caused by psychological distress.  It is not uncommon for children with chronic pain to have night terrors.  He recommended we try a drug called Clonodine.

I must have checked on her twenty times that first week.  Once we got the dosage right, it actually worked…sort of. The night terrors ended for a few weeks.  We still had to sit by her bed, stop her from scratching and rub her itchy spots as she fell asleep and he still woke up fussy once in the night and tucked herself in our bed.

Bella's Back taken last week. The red spots are scabs from scratching, the pink areas are scars

 

Then the seasons changed, her eczema got worse and the night terrors came back.  She is still on the clonodine, the antihistamines and the steroid creams.  There is no real pattern to our nights.  Sometimes there are multiple night terrors that last over 30 minutes.  Sometimes there is only one night terror that lasts 15 minutes.   Almost every night after the night terrors, in the wee hours of the morning, she stumbles into our room while quietly crying.  She climbs into our bed and asks me to rub her itchy spots.  Once she has settled back into a deep sleep (approximately 30 minutes later), she sleeps late into the morning.

 

The Announcement

There are very few people who know how much of a struggle the past five years have been for us.  I don’t tell you our story for pity.  In fact, I know that I have so much for which to be thankful.  While it crushes my heart to see my child suffer, things could be so much worse.

I hate, hate, HATE that my child is dependent on these drugs, yet I am extremely grateful that they provide her some relief.

I am sharing my story because we have been given an awesome opportunity.  This weekend Bella and I will hop on a plane and fly across the country for a two week intense pediatric atopic dermatitis (eczema) program at National Jewish Health Hospital in Denver.

I don’t know anybody in real life who has eczema like Bella’s, but when I’m online it seems like they are everywhere.  Believe it or not, many children have it much worse than Bella.

It is for these children and their parents that I share our story.  Please stay with me as I share a daily diary of our experience the next couple of weeks.

Read National Jewish Health, Day 1

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


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43 Responses to “Our Personal Story, Part 2 and an Announcement!”

  1. Wow. I can’t even imagine what you’re all going through. Poor baby.
    A friend of mine has mild eczema, and he read about vinegar being good for skin, so he started applying it twice a day. It’s worked wonders. No scaly patches since he started, and he says there’s been no itching. Just a thought, if you haven’t tried it yet.

    • Nancy says:

      I have heard vinegar can be soothing IF you don’t have any open wounds. She always has open wounds so I would never do that to her. Thank you for sharing though!

  2. daisy says:

    That is wonderful news! You will be in my thoughts and prayers. Can’t wait to hear how it goes! Continued blessings…

  3. Nicole Hasak says:

    I am so sorry for what you and your poor daughter have been going through. I hope and pray that the program in Denver is a big help.

    This is a very simplistic thing, which I am certain you’ve either already tried, or have been told, but my daughter and son have each dealt with bouts of intensely dry skin. They also both have very dry skin on their hands no matter if the rest of their bodies are affected.

    When the itching skin is bad, we put Aquaphor on their hands and tell them it needs to sit overnight, and put plain gloves on their hands. The benefit is two fold as their hands really do get less dry, but also they aren’t able to tear in to their itchy skin while they are asleep.

    My youngest has Asperger’s as well, so it took a few nights for him to get used to the gloves/mittens, but he now looks forward to his special “hand treatments” and I love that they don’t scratch open any itchy spots during their sleep.

    Best wishes to all of you on your journey to make life better for your daughter.

    • Nancy says:

      Hi Nicole, Thanks for sharing your tips. Yes, we have used aquaphor but typically stick with unscented petroleum jelly. It is wonderful to use after a bath to seal in the moisture. I have head NJH does not recommend it as it doesn’t allow the skin to breath. I’m looking forward to seeing what they recommend.

  4. Christina K says:

    Nancy,

    I’m so glad that you all are getting to go! Please do keep us all updated on how it is going.
    Christina

  5. Joy says:

    I was the Bella in our family, but not nearly as severe. I do have my share of scars from scratching and if I don’t watch myself I still have itchy fits where the itch is too much to control.
    One thing my parents’ used when I was little and that I use now when it’s bad, is baking soda baths or oatmeal baths. I don’t know if either of those would work for your Bella, but I thought I’d pass on what I know.

    • Nancy says:

      Thanks Joy, We have tried baking soda and oatmeal baths (separately of course!). I think it helped some, but not nearly enough to continue them. Thanks so much for sharing your tips!

  6. J. says:

    My skin was how I found out about my gluten intolerance problem. When I was in my late 20s I started getting these itchy blisters on my skin. They itched so badly and it was painful. Seven years and seven doctors later a dermatologist finally diagnosed me with dermatitis herpetiformis a sin condition related to celiac disease but very little is known about it. Long story short, I’ve been GF since and have had no recurrences. Little did I know before then that my skin issues could have anything to do with GI issues. All the best to you and I hope you find the answers your need.

    • Nancy says:

      J., I’m so glad you found the problem! I find it so interesting how our gut is connected with everything. Thanks for sharing your story!

  7. Lisa says:

    I am 52. In 1995 I was under huge amount of stress. I broke out in hives from head to toe, with horrible itching etc. I had no help from doctors. I was told I would always have this problem. Nope! I saw a naturopathic doctor. Changes made were a whole foods diet among other things. No fast foods, noting from a box. No MSG. As time went on its become much better, so that now its hard to believe how bad it was. A cream by Derma E is also wonderful. Its called Stop Itch. Please contact me and I can give you more ideas. Blessings…

    • Nancy says:

      That’s wonderful Lisa! We went almost a year with no processed food. It helped a little but it certainly didn’t cure her. Thanks for chiming in.

  8. Charlene says:

    My heart goes out to you and Bella. I am 56 and have had eczema since I was two weeks old. It has recently resurfaced with a vengence so I empathize in real time over the pain, itch and suffering your sweet daughter is feeling and understand the exasperation and desperation you must feel on her behalf. Thank you for sharing her story, seeking answers on her behalf, trying things to bring relief and letting others learn along with you. I will pray you will find definite relief for her and the rest of your family as well. I did have a time as an adult when I too “forgot how to sleep” because of the intense itching, but when the itching got under control, the sleep resumed. By the way, ice packs will numb the heat from the itch bringing a bit of relief. I often fall asleep with an ice pack on my worse spot.

    • Nancy says:

      Hi Charlene, It is wonderful to know you are not alone, isn’t it? I hope sharing our journey will somehow help you. I have tried to get her to use ice packs but she typically refuses them. Maybe I’ll try again. Thanks again for sharing your story!

  9. Amber says:

    Nancy, first I want to tell you I admire you so much. Your strength and unwavering dedication to Bella is inspirational. I just can’t imagine these past 5 years for you! Yes, of course things can always be worse, but we all have permission to feel hopeless, scared, and angry at our situation (especially when it come to our children). I again thank you for sharing this story. And this opportunity is so huge Nancy and I will hold you and your family close to my heart while you are there. I will be reading your daily diary too.

    Warmly,
    -Amber

    • Nancy says:

      Thanks Amber! I’m sure I’ve made wrong decisions regarding her care but I’ve done the best that I can. I have tried to use medication as a last resort. I honestly can say we have exhausted everything else we know of. That is why I’m so excited about this trip. Their goal there is to get you off the medicines. I find this to be very unusual and refreshing!

  10. Cara says:

    I have been through the same intense itchiness, and have finally controlled it – not totally eliminated but really occasional and minimal.

    First, I had dermatitis herpetiformis from celiac disease. I have been gluten free for over 5 years now. I’ve only had 2 re occurrences of the rash during that time, both after eating at restaurants where I was assured my meal was gluten free but it obviously wasn’t. I no longer eat in restaurants.

    Secondly, I was sensitive to fluoride in the water supply. I had been gluten free and doing well until our city started adding fluoride to the water. I got incredibly itchy and rashy when they did. I got a home water distillation system and a shower filter which I change frequently which helps, I can tell when it needs changing because I get itchier.

    Third, I asked my Doctor to do the extensive IgG and IgE allergy testing. By eliminating what I am most sensitive to and staying on a rotation diet with milder food sensitivities I’m to the point where I am comfortable most of the time. This change has been fairly recent and I am still finding out what triggers symptoms, but by keeping a daily list of foods I eat I am seeing a pattern with the occasional itchy episodes when they do occur.

    During all this I found that my best treatment to stop the itching and be able to sleep has been to spray my itchy area with Bactine. The pain relieving ingredient also stops itching. I also use a natural oil after I shower ( avocado oil for me ) to combat dryness. I was using almond oil but almonds were on my list of sensitive foods, and switching the type of oil has definitely made a difference. Avocados are in the latex family though, so if you are sensitive to latex don’t try it. Best to find what you are and aren’t sensitive to.

    • Nancy says:

      Hi Cara,

      Thanks for sharing your story. I have wondered about a house filter for the water. I’ve even heard a shower filter helps tons. I have never thought of bactine. I have wondered about something that numbs but I thought it would sting her open wounds. A very big part of what we will be doing the next few weeks is allergy testing in all kind of formats. I am really excited about that. We have found some of her triggers but obviously not all of them. I’m so happy you’ve been able to control your itchiness! Thanks for speaking up and giving more to think about!

      Nancy

  11. April says:

    I pray that what you learn there helps the very many children who are suffering!

  12. [...] Personal Story – Part 1 and Our Personal Story Part 2 and an Announcement by Nancy at Real Food Allergy Free. This story fills me with wonder and touches me to my core, yes, [...]

  13. All of my daughter’s baby pictures are that just like Bella’s!
    I would wake in the night to her crying, and find her in bed scratching.. and bloody. It was horrible.

    She did outgrow hers, for the most part. Her hands are still terrible and she gets little patches randomly on various parts of her body but we’re able to control it for the most part, minus her hands.

    Sending prayers. Lots of them. To you. For relief for Bella. For your entire family. For peace.

  14. Amber says:

    Hi! I just read about Bella and wanted to tell you I will be praying for you all. My 4 year old had eczema when he was little but thankfully not very bad. My 2 year old little girl has eczema and it is a lot worse than his. We went to the allergist and have to avoid all nuts and eggs. If she even eats anything that has been fried where something with eggs has been she itches for days! We have to use steroids to keep some spots under control but we have never gotten it to clear all the way up or to stay cleared up for any length of time. She is finally starting to sleep some but use to wake up screaming and scratching. We still have some nights where we will be up for a few hours with her itching but thankfully they are not nearly as frequent. I PRAY you all get some relief for your daughter. I know it breaks your heart!

    • Nancy says:

      Thanks Amber! If you find that you cannot get it under control at home PLEASE take her to national jewish health. This place is absolutely amazing. Other than a little redness on her hands and feet (worse spots) my daughters skin is absolutely clear after one week. She is getting foods back into her diet. The education is unbelievable. People are here from all over the country dealing with allergy/ashtma/eczema related illnesses and they leave here with their lives changed.

  15. jackie says:

    coconut oil is helping us, i rub coconut oil on and put lansinoh breast cream over top. we are working on eliminating foods from our diet. i hope you have good results, and thanks for sharing- your info has really helped me!

    • Nancy says:

      Hi Jackie, Thanks for chiming in. I have heard that coconut oil and lansinoh help a lot of people. They didn’t help Bella. These people at National Jewish are amazing and after one week they have her skin completely clear. Swimming is highly recommended as long as you wash off immediately with a gentle cleanser and then use something to seal in the moisture.

  16. jackie says:

    oh and chlorinated water helps me but havent tried it on my toddler yet. if i go in a chlorinated pool and then rub in coconut oil my skin is better. i am allergic to the methotheliazone and related chemicals in body washes etc so i use coconut oil

  17. Jessica Lizana Walsh says:

    Hi, Im new to your page, I found it today searching for allergy free recepies. I have a three year old daughter with milk,egg and soy allergy and eczema. A few years ago we moved from New York to Chile, her eczema was affecting her sleep with the constant scratching which made her crancky during the day leading to a vicious cycle. Desperate since creams, lotions and oinments weren´t helping as much as i would have liked we were willing to try anything. So we did, many years ago it was common for people with eczema here in Chile to bathe in Afrecho to calm the itching. I believe the translation for afrecho is bran. We used it alternating with oatmeal baths for over a year and noticed an improvement in her skin. If you need any additional information please let me know I would be happy to assist.

  18. Julie Hyder says:

    Thank you so much for writing this…my son has been suffering for 6 years exactly like this. To hear your story makes me think of my son. It is exact. So comforting to hear all of this and so sorry your daughter is having to bear this. We recently made the move to the beach for a better environment for our son and they are contemplating sending us to National Jewish. My question for you is, did they do much else other than the wet wraps? We have done these for years with no real help. I don’t want to spend so much money to repeat what vanderbilt {nashville} and Florida childrens{orlando} and JoeDiMaggio childrens{ft lauderdale} have tried already. thank you so much for your response. Feel free to email me if you have some answers to this question. I will be praying for your Bella.

    • Nancy says:

      Hi Julie! It was definitely the wet wraps that made all the difference for us. I had not tried them at home so they were new for us. I do know of another family who kept their kids in wet wraps all day and went to NJH to learn how to not have to wrap him all the time. They had wonderful success. I’m going to email you their Facebook page. I just don’t want to post it on here without permission.

  19. Nancy says:

    I’m a 60ish lifetime eczema person. Not too bad until I had to stop using cortisone (eczema settled on my eyelids) and antihistamines (dried out my eyes, whole other set of problems). My relief came from acupuncture. Yes, it did. I had red raccoon eyes when I went for my first treatment and the improvement was noticeable after my first visit. Children take less time to see good results according to my acupuncturist. She treats the digestive system as well as the skin. I go for treatments periodically and I feel so much better. It’s costly, but worth it for me.

    • Nancy says:

      That’s great Nancy! Acupuncture is the one thing we didn’t try. If we didn’t get such wonderful results from NJH, acupuncture would have been next.

  20. Pat says:

    Please, please read “Healing Psoriasis: The Natural Alternative” by Dr. John O.A. Pagano, DC. On the best seller list for 10 years!! Discusses psoriasis, ezcema, and acne. I am sure you will be amazed, just as I was. His protocol works!!!! Blessings to you.

  21. Monique says:

    Nancy, I am also a mother of four, and my kids and husband have allergies also. Reading your story brought tears to my ears and an ache in my stomache. You are awesome and inspiring! No one understands like another allergy mom what challenges moms of allergy kids face. May God bless and strengthen you and your husband always in your endeavors to help your daughter, and may God also bless and soothe your sweet princess.

  22. stacey says:

    Hi. Thanks for sharing this. We ourselves are going through eczema with our Isabella too. Found out it is dust mites, dog dander, grass, that are the worse with moderate allergies to milk, egg and wheat. Trying to explain to people that she is not gluten intolerant but wheat allergic is so frustrating and annoying. Here in Australia I can get heaps of GF but not wheat free. Have taken to making our own bread with oat flour which turned out great. I am hoping she will eventually grow out of it, it is so expensive to look for alternatives. Good luck with yours.

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