Please don’t call it “just eczema.”

I started noticing it with sunscreen. My daughter Ady would get rashes in the creases of her arms and behind her knees. It seemed to be from the sunscreen they were using at daycare before they went out to play. They cleared it with all parents first before that it was ok to use this brand and said it would be easier than everyone bringing in their own. Made sense. Then I noticed she would break out when we used sunscreen and lotions at home, especially the aerosol ones. Usually just on her arm creases and behind her knees. The rashes were much worse with the aerosol ones. So I did a bit of research and learned about Vanicream sunscreen. I had to order it from my pharmacy but it seemed to cut down on her rashes. Her doctor prescribed some hydrocortisone 1%, and we would apply it to her as needed for her “itchies”.   It was year long though so she would also get patches in the winter as well as summer. I just thought she had sensitive skin.

When my son Andrew came along his first year of life was dedicated to finding the cause for his colic, reflux, constipation and feeding issues, which led to us learning he was tongue and lip tied. But he also suffered from Eczema. He was born with cradle cap.   I did a lot of research on this and found a product called Gentle Naturals Baby Eczema Relief Cream.   It came with a brush and within about 5-6 uses it was gone and it never returned.   Andrew also had eczema behind his ears, in his ear canals, in his neck crease, between his toes and behind his knees.   He would itch and itch like crazy. I had to always make sure his nails were trimmed to help prevent him from scratching himself. There were nights he would itch so bad we would have to hold his arms to keep him from itching and clawing at himself. He was also clawing at his throat due to his reflux.

I used the prescribed hydrocortisone and then we were switched to nystatin to help with any yeast in these common eczema areas. No one ever seemed too concerned when I brought up his eczema and itchies. I remember once calling in to the nurse line asking what else I could try when we were not seeing relief. I had changed soaps, lotions, and was religiously “greasing” him up. I had tried bathing daily, I had tried bathing every few days but nothing was helping. So, I called to get more advice. I remember asking, “But what is causing him to itch?” I will never forget that response. The lady told me, “We don’t try to figure out the cause we only try to manage it.” She responded like I had asked her a completely absurd question. But, how did I know? This was a world I had never really entered. I was a mom that just wanted to give her little one some relief. That line stayed with me to this day because I think it is the most frustrating part about eczema. The “WHAT” that causes it.   I can tell you why they tell moms that. I truly know why. Because Relentless parents out there like myself will go to the ends of the earth to search for answers for their child. The trouble with Eczema is that it could be ANYTHING and it is one hell of a journey figuring it out….

At 6 months of age I took Andrew to his first dermatology appointment. At that appointment Eczema was described to me as being an “enzyme issue” and it was explained to me that it is not always allergy or food related.   I was given a specific regimen to apply his hydrocortisone ointment and lotion and I remember it was the exact opposite of what our Pediatrician had told me to do. Time and time again I would find that we could use a steroid cream like hydrocortisone and as soon as you would stop it would flare right back up. It was extremely frustrating.

When Andrew was 8 months of age I took him outside of our Pediatrician’s hospital system and got a personal referral to an Allergist.   At this time, I wanted to see if allergies could be the source of the colic and eczema Andrew was experiencing. The doctor asked me to come up with a list of what to test. He said it would have to be something he has already been exposed to and write down anything that I thought it could be. Basically, any foods that I have tried. At that time I asked if we could add Peanuts since Peanut Allergy ran in the family.   I assumed he would have been exposed through breastfeeding. I was informed that he was not exposed through my breast-milk and since we had not yet given him peanuts it was not something that we would be adding to the list.  He also told me that it is not the specific allergy that runs in the family but rather the ability to develop allergies that is genetic. Andrew was tested for:

Skin Prick Testing – 7/31/2014

  • Cows Milk – negative
  • Banana – negative
  • White Potato – negative
  • Sweet Potato – negative
  • Squash – negative
  • Carrot – negative
  • Corn – negative
  • Wheat – negative
  • Oats – negative
  • Soybean – negative
  • Rice – negative

With everything negative, I put aside the notion that it was a solid food that was contributing to our issues for a while and continued about our formula frenzy trying to find something that didn’t give Andrew colic.

At 12 months Andrew had been diagnosed with tongue tie and lip tie which took away his reflux and constipation issues. While it helped Andrew in so many ways it did not take away his eczema. At this time his eczema cleared up on most of his body except for his arm creases and behind his knees. 2-3 weeks after Andrew’s tongue and lip tie release we received his MRT Blood Test results. This was a food sensitivity test we had elected to run through our GI doctor.

The results were as follows: We were to eliminate all foods from the Red & Yellow categories:

MRT Test Blood Test Results 11/4/2014:

Red:

Broccoli

Lemon

Yellow:

Acetaminophin

Honeydew

Banana

Lettuce

Benzoic Acid

Millet

Black Pepper

Oregano

Blueberry

Pecan

Cashew

Plum

Codfish

Rice

Crab

Solanine

Cucumber

Whey

Yellow #5

Yellow Squash

We kept Andrew on this elimination diet for 6 months and it did not clear his Eczema.

I think to understand what we were dealing with here you need to understand that behind Andrew’s knees looked like severe burns. I would often describe them as looking like “chemical burns” because when you googled chemical burns and eczema…

cropped-getPart.jpgcropped-getPart-11.jpg

His looked like “chemical burns.” Oh and he itched. He would claw behind his knees. He would finally settle to sleep at night and he would wake and itch. He would itch like crazy! He would itch during the day, in the middle of playing and he would get in a zone and go at it! To watch your child itch day and night can drive you crazy with trying to get them some relief! Have you ever itched? I remember as a kid getting bug bites at camp and holy crap that itched. I remember my mother taking me to the drug store and getting me cream that provided me relief, even if it was only temporary. I wanted to provide that relief for my child, as any mother would do.

I started researching, educating myself and tried different things. I followed basic things like only changing one variable at a time and I hunted for relief and new ideas.

I started compiling a list of things that I tried. Some things would help or manage it but I wanted to find the culprit, what caused the itch and what would take it away!

These were the things I tried:

IMG_1016

 

 

Body Washes, Creams, & Ointments Regimens:

Hydrocortisone 1 & 2.5%

Nystatin cream

Coconut Oil

Aquaphore

Aloe

Petroleum jelly

Neosporin

Butt Paste Diaper Cream

Shea butter

Cetaphil lotion

Cereve Baby Lotion

Baby Organics lotion

Aveeno Baby Body Wash

Johnsons Natural Body Wash

Honest Company Body Wash

Unkers cream

Desonide cream

No body wash

Baking Soda Baths

Epson Salt Baths

Aveeno Oatmeal Baths

Steroid Free

 

Things That Touched His Skin:

No wash clothes

Pampers Sensitive Diapers

Target Diapers

Honest Diapers

Huggies Diapers

Honest Wipes

Huggies Wipes

Pampers Sensitive Wipes

No dryer sheets

Tide detergent

All detergent

Not a polyester/nylon thing

Hypoallergenic Pillow

Hypoallergenic crib sheet

Car Seat Covers – I made covers with old receiving blankets

 

Environment:

It’s not a pet thing

Not a weather thing

Not scabies or mites

Purchased Hepa Air Purifier for his room

 

Food & Water:

Food Journals

Elimination Diets

Folic acid free

Gluten Free

Dairy Free

Purchased Osmosis filter for our home drinking water

Purchased Carbon Water filter for whole house filter

I learned how to flush our Hot Water Tank.

 

Allergy Testing:

Skin prick testing

Blood Allergy testing

MRT Allergy testing

Holistic Muscle Allergy Testing

Food Journals

 

I joined a Social Media Group called “Eczema Parents” on Facebook.   Every parent described such similar stories of “the itchiness” and “rashes” we were experiencing. There were so many ideas, thoughts and success stories shared amongst the parents. It was other parents who understood wanting so bad to find the answer to cure the “itch” and provide relief. When people in my immediate world me would say, “Oh, its just eczema” or “Oh it could be so much worse”, these parents understood the Eczema Hell I was going through. But it was also a reality check joining that group. Seeing the pictures of what other parents were going through was very humbling for me. My heart broke as I saw what so many children go through in regards to eczema. While my son suffered on the back of his knees and in his arm creases, some children were suffering from severe eczema on their whole bodies and beautiful faces. It broke my heart more than anything I think I have ever come across. While I couldn’t relate to the extend of what they were going through I understood their need and desire to cure the itch and find relief for their child and that was what brought us together. This group was powerful. It inspired me to keep trying new things. Every now and again you would see a parent’s post pop up that would say, “We found what caused my kids eczema!” It kept me believing that there was a light at the end of the tunnel and I could find what was causing my son to itch as well if I just kept trying.

 For months I tried so many creams, ideas and theories. On March 7th of 2015, I visited Dermatology again but found a new dermatologist. Andrew was prescribed Hydroxyzine, which is similar to a Benadryl, and Desonide cream, which is a stronger steroid cream than hydrocortisone cream. She wanted to get a regimen to truly control the eczema. The idea was to stop the itch with using the antihistamine and then it would give the steroid cream the chance to work. It worked, until the regimen was over and then it came back. It was the vicious cycle that all Eczema Parents know. Again it works while you use the Steroid, then it stops.   This was in fact the best regimen we had been on. It helped control the itch. It helped Andrew get relief and provided him much needed rest. I did however hate the idea that we had to give our child an antihistamine to get him to be able to sleep. My father was a pharmacist and I had grown up with the notion that you don’t put anything in your body unless you absolutely had to.

 I decided to try an alternative doctor and that’s when I looked into Holistic Muscle Allergy Testing. I had been reading about at-home muscle testing and started watching utube videos about how to do acupressure at home. (That said acupressure not acupuncture) I would rub Andrew down at night with his lotion and rub his legs, as I would pray over them. I would pray over his legs and repeat, “Your skin is calm, your skin is healthy, your skin is beautiful. “ I would rub certain parts of his legs that I read would help detox him. I had no idea what I was doing but he liked his leg rubs at night while he watched his bedtime show. I saw no results from this.

I visited a Holistic Doctor in April of 2015.

Her results were as follows:

4/28/2015/ Holistic Muscle Allergy Testing Results

 Dairy

All Food Coloring

Bell Pepper

Cayenne Pepper

Chili Pepper

Tomato

Soybean

Prune

MSG

Nitrates

Rabbit

Dust

Dust Mite

Feathers

Chlorine

Bromine

Fertilizer (Pellet)

Round Up

Our list of allergies was overwhelming but I would follow this elimination diet as suggested.   She also explained to me that his rash behind his knees was yeast and I should keep using the Nystatin. That to me was infuriating because Nystatin did absolutely nothing for him and I had tried it several times already.   It didn’t matter what I tried. It didn’t take away Andrew’s eczema. We continued to manage it with Hydroxyzine and Desonide cream for flares and we went on for a few months.

In May at Andrew’s wellness visit, his Pediatrician had a recommendation for us. She had asked me if I had ever tried Derma-Smooth? It was a prescription and it was expensive she explained. She also explained that she has had parents swear by it. She said she was so confident she would offer to pay for it if it didn’t help. Of course, I wouldn’t hold her to it. I knew better. But, I was not holding back and I headed to my Pharmacy. I remember it being in the ballpark of roughly $200. I don’t think I told my husband. When I got home I applied it. Andrew broke out in an instant rash all down his legs. I messaged our Pediatrician right away. She explained that it contained Peanut Oil and I needed to head to Main Campus Peds Allergy to check if Andrew had Peanut Allergy.

 On 6/30/2015 we visited our hospitals system’s Main Campus Allergy Specialist to sort through our long list of allergies and it was a long one. It was tough because I had never seen my kids actually ever have a reaction that I could say was truly food related. The only thing I ever noticed was that my daughter Ady seemed to avoid Peanut Butter.   I asked her since we were testing to just add peanut to both kid’s lists to get this figured out.

For my daughter Adalyn they did a skin prick test. For my son Andrew, they did blood work. He did not have an inch of clear skin on his back at that time to successfully conduct a skin prick test. Adalyn screamed during her skin prick test. She yelled, “it hurts, it hurts!” through the whole test as we waited for her results to be read. Adalyn came back showing an allergy to Peanuts so they asked for her to also have a blood test done. Putting them through the blood work was a whole other nightmare that I absolutely hate having to put them through.

 Allergy Blood work

 Andrew:

Cashew – class 2

Pistachio – class 2

Banana – class 2

Peanut – class 2

Dog – class 2

 Adalyn:

Showed 0 for Peanut on blood work and showed positive for Peanut on skin prick so her results were conflicted.

 We were advised to avoid peanuts for both and invest in epi pens for both. That was when we became Peanut, Cashew, Pistacio free. I will also add that removing these items from Andrew & Ady’s diet did not stop them from itching and it did not take away Andrew’s horrible eczema patches behind his knees. Both of my kids were also seeming to itch in their arm creases more and more and my daughter was itching horribly behind her knees as well while hers never looked like the burns Andrew’s looked like.

 On 7/24/15 I sought a 3rd Dermatologist opinion. She looked at me and plainly said, “You need to be more aggressive” with Eczema. At first I was a bit caught off guard. I thought… Uh… Did you not just hear what a lunatic I have turned into? She encouraged me to do the following regimen.

* Desonide

* Ketoconazole

* Nightly Atarax for itching

* Vanicream lotion

* Dove Sensitive cleanser 1-2x per week

 It helped again to control the eczema. This proved to help quite a bit but again our Eczema would return any time we would try to come off of the regimen.

From July of 2015 through January of 2016 this is the regimen that helped us through flare-ups substituting the Dove Sensitive Soap with Vanicream Bar of Soap. I also used Vanicream Shampoo & Conditioner. I took a break for a while from changing things. I just needed a break and to step back. In January of 2016 I started researching again. I checked out books on eczema and allergies at the library and read what I could to learn more. I found articles online on kids that itched when they sweat. My kids usually would itch when they were sweating. My daughter actually sweats a lot. She always says, “Mom, I’m sweaty!” when I am usually freezing. When she was a baby I remember thinking it was odd that you couldn’t put blankets in their cribs when I became a new mom. I always wrapped my babies in layers and swaddled them as recommended. I remember our Pediatrician telling my husband and I that with this generation of kids not using blankets in their cribs and bassinets they were going to be a warmer generation. Maybe there is something to this; it was always something I remember. Either way, I remember reading about kids with itchiness due to sweat get relief from Colloidal Oatmeal. This was something I had not tried and it was new to me. I researched and found Aveeno Baby Eczema Therapy Soothing Bath Treatment and Aveeno Baby Eczema Therapy Moisturizing Cream contained the Colloidal Oatmeal 1%. I had tried the Aveeno Baby lotion before and it seemed to irritate my son’s skin but I thought I would try again. The ingredients were different in this one. I have to tell you that this seemed to sooth my kid’s itchies more than anything I have come across. It does not burn and my son actually asks for it. For bad “itchies” I will add the hydrocortisone over top.   This did not take away the eczema but it was the first thing that I offered that really seemed to help soothe and didn’t irritate the eczema further. It made me hopeful. It was a bit of a light and so I started reading the posts through Eczema Parents Social Media site again for new things to try. I am a bit relentless and I was going to find the culprit but for now I was happy to find something at least that helped soothe in the meantime. When you see days where your kids itch and days where their skin is clear it is very difficult for me to believe that SOMETHING does not cause this.

One night in January of 2016 I found a group of parents that started talking about detergents in the Eczema Parents support group. I had used Tide Free & Clear since Ady was young. At some point we had switched from Dreft to Tide Free & Clear thinking that was a good option because it said “free & clear”. During my journey of trying things I switched to All Free & Clear. Andrew got very rashy all over and most heavily on his back during that trial so I switched back. It had always been my assumption that with a detergent allergy it would be wherever the clothes touched. Since I saw how he reacted to All F&C I went back to Tide F&C thinking that’s not it. The group of parents all commented that night on which detergent they were using. It seemed to go, Tide F& C, All F& Clear, Repeat, Repeat, and Arm & Hammer Dermatology. What is that? I had never heard or seen Arm & Hammer Dermatology before.  It was worth a shot to try something new.

There was another reason I was considering trying the detergent route again. I remember when we bought our new HE machine about 5 years back. A friend of ours explained to us to really use the detergent sparingly. The new HE detergents are very concentrated and clothes today hold so much detergent. He explained that you could probably wash your clothes without putting soap in the dispenser every now and again and you have so much detergent built up in your clothes that you wouldn’t need to add soap to the wash. Remembering this, I always use the HE soap sparingly although I have never tried not adding soap. But, now maybe was time to try a new detergent again. So, I did. I picked up Arm & Hammer Dermatology from our grocery store and it was about half the price of the others. I also used the extra rinse cycle on my machine as I tried before. Miraculously, Andrew’s burns disappeared and did not return for the first time. Ady’s itchies disappeared as well. For the next few weeks I could always tell when my kids would come in contact with a blanket or item that has not yet been rewashed because they will start to itch. Do my kids never itch? No, now and again they will get an itchy spot. For those I use the Aveeno Baby Eczema Therapy Lotion. But, I am no longer struggling with why Andrew’s legs look severely burned. I have not seen his crease burns since and it has been 2 months. I have not had to give Andrew hydroxyzine to sleep since. I am not watching him claw at himself during play or wake at night to scratch.   Our allergist once described the back of his knees as looking scalded and I think that is a great description. It is hard to think that this poor kid had to endure that and for sooo long. I am so thankful that this sweet little boy of mine that had to deal with tongue-tie, lip tie and eczema and my sweet daughter can finally get some relief. They both sleep well and are finally get some relief from scratching.

Looking back, I think when my kids sweat; they usually sweat as one would think in their arm and knee folds. I believe that the moisture would release any leftover detergent in their clothes and this would cause a reaction. Am I a scientist? Did I do some scientific testing? No, I am a relentless mom and this is what I saw. This is what I went through with my children. My hope is that other moms dealing with eczema will read this and it will help someone else find answers sooner than we did. Do I fault Tide or All? No, absolutely not. The tricky thing with eczema is figuring out what your allergy is. What your body is reacting to. For others, these detergents may be their light at the end of the tunnel. For us, Arm & Hammer Dermatology was our light.

***

March 8, 2016 was the day for our follow up with Allergy to do the skin prick retest since both of my kiddos had tested positive for peanut allergy the June before. It has been two months since Andrew does not have the burns and Ady’s itchy spots had been relieved. There was a part of me that thought that since their bodies were reacting so badly to the detergent that maybe it was causing them to show signs of allergies on the skin prick test. It was just me being hopeful.

I took both of my kids to retest for their allergies and both kids came back for their skin prick test as a 4+ on a 0-4 scale for peanuts. For Andrew he would also test 4+ for Pistachio and Cashew. While I feel we had such a Win in the Eczema Department I feel completely defeated over the food allergies. Its like as soon as I got a handle on tongue-tie, I had to focus on eczema, now that I have a handle on the eczema we are dealing with peanut allergy. But, why? Why so severe? As a relentless momma, I feel I have to get more answers, and I will write when I find any answers that help us, because maybe, just maybe they will help you and you find answers much sooner than we did. Thank you for taking the time to read our story. I will keep you posted as our journey continues.

My Favorite Momma Products: Allergies

FOR ALLERGIES:

The Ouch Pouch

https://www.etsy.com/shop/OuchPouchShoppe

The Ouch Pouch has been very helpful in carrying around our Epi Pens and helping us keep organized!  I have one for my daughter and one for my son.

Inside I keep:

* Benedryl

* Trainer Epi Pen

* Epi Pen

* Benedryl Dosing Post It

* Doctor and Emergency Contact Info

* Our Contact Info if lost

* When to use Epi Pen Instructions I found on F.A.R.E (Food Allergy & Research Education) website. You can print the poster from the below link. This is very helpful when our kids go to a relative’s house or have a sitter come over. I have everything right in the Ouch Pouch and can do a mini training session before I leave.

http://www.foodallergy.org/file/common-symptoms-poster.pdf

 

Mini Back Packs

http://www.target.com/p/swissgear-mono-sling-black/-/A-11149390?ref=tgt_adv_XS000000&AFID=google_pla_df&CPNG=PLA_Luggage%2BShopping&adgroup=SC_Luggage&LID=700000001170770pgs&network=g&device=c&location=9015340&gclid=CKvH0N-jk8wCFZcdgQodSIUJkQ&gclsrc=aw.ds

FullSizeRender

http://www.amazon.com/LC-Shoulder-Unbalance-Backpack-Satchel/dp/B00NNEUYI8/ref=sr_1_fkmr0_1?ie=UTF8&qid=1460813934&sr=8-1-fkmr0&keywords=lc+prime+mini+backpack

I find these mini backpacks very convenient for when we are out with our kiddos.  They are big enough to hold both Ouch Pouches, a diaper, wipes, wallet and cell phone.  I like to have two, one for me and one for my husband for when we are separate with the kiddos.  The mini backpacks also allow me to be “Hands Free” so I don’t have to be carrying things around.  I have come to really enjoy these!

 

Tips & Things To Consider If Just Starting On Your Eczema Journey

Tips & Things to consider if just starting on your eczema journey: 

  • Keep nails trimmed and filed. Brush each finger across your face to ensure there are no sharp edges that could potentially scratch your lil one.
  • Use scratch mittens for infants
  • Always use washing machine soap sparingly
  • Use the Extra Rinse Button when washing clothes
  • I recommend Arm & Hammer Dermatology Detergent
  • I recommend Gentle Naturals Baby Eczema Relief Cream for Cradle Cap
  • I recommend Aveeno Baby Eczema Therapy Soothing Bath Treatment
  • I recommend Aveeno Baby Eczema Therapy Moisturizing Cream and “grease” your child up often!
  • I recommend Vanicream Sunscreen, Shampoo, Conditioner and Cleansing Bar
  • Try not using soap or shampoo
  • Try not using washcloths
  • Remember that every child is different; think outside of the box in terms of what is affecting your child.
  • Use your mother instincts. Trust them.
  • If considering dust mite allergy, purchase a Pillow Cover, Hypoallergenic Mattress Cover and Hepa Filter for child’s room.
  • If considering water as culprit have your local water company or water Treatment Company come out and check your levels. They usually do this free of charge.
  • If considering fabric, stick with cotton clothes that allow your child’s skin to breathe. Remove all polyester clothing items from your child’s wardrobe.
  • There are things to help control the eczema while you search for answers. Ask your doctor about a combination of antihistamine and steroid cream regimen to help control the eczema.
  • Keep Food Journals if suspect food allergies
  • Consider that it may not be food related and consider environment factors as well.
  • Keep trying
  • Keep searching
  • Think of things through your child’s day that touch his skin. Think of cleaners that you use on your child’s high chair, think about their car seat, think about scents in your house, car or on their caregivers.
  • Withhold from using any perfumes, scents, or air fresheners while trying to find culprit. This includes scented trash bags.
  • CONSIDER EVERYTHING!
  • Be sure to only change one variable at a time when testing out new things.
  • You might not find an answer but that doesn’t mean it’s not okay to try. Don’t let others discourage you. You are your child’s biggest advocate!

 

 

My Favorite Momma Products: Eczema

FOR CRADLE CAP:

Gentle Naturals Cradle Cap Care
http://www.amazon.com/Gentle-Naturals-Cradle-Brush-Ounce/dp/B007TTHYZO/ref=sr_1_1?ie=UTF8&qid=1453313967&sr=8-1&keywords=gentle+naturals+cradle

FOR ECZEMA:

Vanicream Shampoo & Conditioner
http://www.amazon.com/Free-Clear-Set-Shampoo-12-Conditioner-12/dp/B00164E8TI/ref=sr_1_1?s=beauty&ie=UTF8&qid=1452108200&sr=1-1&keywords=vanicream+shampoo+and+conditioner

Vanicream Cleansing Bar
http://www.amazon.com/Vanicream-Cleansing-Fragrance-Free-Ounce/dp/B00O92QM9I/ref=sr_1_2?s=beauty&ie=UTF8&qid=1452108261&sr=1-2&keywords=vanicream+soap

Aveeno Baby Eczema Soothing Baby Bath Treatment

http://www.amazon.com/Aveeno-Baby-Soothing-Treatment-Count-3-75oz/dp/B005982NIU/ref=sr_1_1?s=baby-products&ie=UTF8&qid=1452107836&sr=1-1&keywords=aveeno+eczema+therapy+bath

Aveeno Baby Eczema Therapy Cream
http://www.amazon.com/Aveeno-Baby-Eczema-Therapy-Moisturizing/dp/B003BJZ1P6/ref=sr_1_2?s=baby-products&ie=UTF8&qid=1452107911&sr=1-2&keywords=aveeno+eczema+lotion

Arm & Hammer Detergent for Sensitive Skin
http://www.amazon.com/Arm-Hammer-Liquid-Laundry-Detergent/dp/B004KS5SWI/ref=sr_1_1?s=movies-tv&ie=UTF8&qid=1452108362&sr=8-1&keywords=arm+and+hammer+dermatologist+detergent

Peanut Allergy – The Why and What Next

On March 8, 2016 I took both of my kiddos for their retest for peanut allergy. They are to be retested yearly. I had high hopes that now that I got their eczema under control that their peanut allergy would have lessened or disappeared altogether.   I know, call me crazy, but I was hopeful. My husband came with me this time for the skin prick testing. The idea was that if both kiddos passed the skin prick they would later do a peanut challenge where they are introduced tiny bits of peanuts in increments to see how they would react. I was hoping to get an all clear before the Fall school year started. I was very confused, frustrated and overwhelmed to see my kiddos peanut allergies both went up on the test and both to a 4+ on a 0-4 scale. While Andrew’s hives enlarged on his back he sat playing happily with his trucks while Adalyn cried and screamed, “It hurt” while her hives appeared.

IMG_3786

After our kiddos backs were wiped and hydrocortisone applied the skin settled while my heart sank. I had so many questions. I wanted to know WHY? Why do my kids have this? What did I do? Why do both of them have this? The allergist was so patient with me and we talked quite a bit. She walked with me out of the office that day and told me to go home and digest everything and call her in a few days with questions.

I have done my fair share of research when it comes to eczema and peanut allergy about as much as any mother could do. And I know my personality is a bit relentless to say the least. But I question everything. I can’t help but ask why? Of course the first thing I do right away is point the finger at myself? Is it me? Was it my poor diet while breastfeeding that caused this? Did I have a leaky gut that I passed down to my kids? Is it their diet? Is it dairy or gluten causing inflammation in their gut causing their little bodies to overreact to peanuts? Is it the fact that they both have the sugar bug vein across the bridge of their nose that is known for making kiddos sensitive to sugar? Is it sugar? Is it Candida? Do my kiddos have poor gut health and have Candida overgrowth from antibiotics? Shouldn’t having them on probiotics be helping this? If you are an Eczema or Allergy Parent you probably have stumbled on the same research and have those same questions floating in your head!

I question the Why because I feel like it should help us figure out the how do we fix this? I have to tell myself again and again that I in no way blame my mother for my allergy to cats so I shouldn’t blame myself for my kiddos allergies to peanuts but I can’t seem to help it. I am their mother and I feel in some way that I should have been able to protect them from this or help them get over this!

I started researching about what parents are doing to overcome their children’s food allergies. I wanted to learn about how I could desensitize them to the point that if they ingest a peanut I would at least know that it may only cause a slight reaction. I have read about Homeopathy, Acupressure, OIT (Oral Immunotherapy), the effect Staph has on the skin, Alkaline diets, the use of probiotics to balance the good vs bad bacteria in the gut, GAPS diet and Gluten diets.   I also question why when we did Adalyn’s blood work it comes back 0 but why she gets conflicting results with a skin prick test and they are two completely different ends of the spectrum. I put all of my thoughts in a letter to our allergist.

March 16, 2016 – Letter to Allergist
I hope you are well and enjoyed your vacation.  I received your message last Monday after we visited your office and I greatly appreciated you taking the time to follow up with us.  I left you a message back but thought I would follow up with an email so I could be more clear on my questions.  
 
Your message indicated that you were recommending we think about doing a follow up blood test for Adalyn X after she tested 4+ on her skin test on 3/8/2016  after testing 0 on her blood work on 6/30/2015.  
 
My husband and I are considering doing the repeat blood test for Adalyn but I have some questions.  What are your thoughts on any of the theories that help to desensitize peanut allergy?  Since last June I have been reading a bit on peanut allergy but after both kids have tested so high it has made me think about what else I should be doing.  Andrew X also tested a 4+ on his skin prick test on 3/8/16.  While I completely agree with the recommendation of retesting and avoidance of peanuts what can we do to help lessen the allergy?
 
I have read about OIT (Oral Immunotherapy), GAPS diet, and NAET theories/techniques for allergy elimination.  In your experience have you seen anyone truly have success in at least somewhat desensitizing or lessening the allergy?
 
Another thing I am curious on is the effect Staph has on any of this?  My children suffered from eczema and no doubt scratched and clawed at their skin for some time.  It is not far fetched in my opinion that staph could be present on their skin. I had asked a dermatologist once if she could swab my kids eczema for staph and I was told it was not necessary.  I recently came across an article talking about the National Jewish Health Organization’s findings on the correlation between Staph and Peanut Allergy.  It talks abut how Staph breaks down the skin and can allow for food proteins to enter the skin.  They found that 59% of patients with Staph tested positive on a skin prick test to peanut allergy.  The article is attached here (http://allergicliving.com/2016/03/15/staph-infections-on-the-eczema-patients-skin-linked-to-peanut-allergy/).
 
The reason I bring this up is because I am curious if it would explain why Adalyn shows high on her skin prick testing but 0 on her bloodwork?  Is it due to the presence of Staph?  Would it be out of the question to swab her skin, do bleach baths (have never considered before), swab her skin again for staph and if negative for staph, repeat the skin prick test?  What are your thoughts on this?
 
I know this is a ton of information and questions that I am throwing out to you.  I thought it was easier to write it out than to try to take up your time over the phone.  I am just a mom with 2 kids with high peanut allergies wondering where I can go from here?  I remember you telling me when I met you that you would love to see a “cure” for peanut allergy in your lifetime.  I can’t say that I am necessarily thinking this would “cure” it but is this possibly an option to at least get my kids somewhat desensitized enough to the point I don’t need to be worried if they ingest it?
 
Please let me know your thoughts.  I welcome any opinions and greatly appreciate any advice you have for us.  I am completely open to ideas or techniques to try to lessen this allergy.  
 

I was pleasantly surprised to have the doctor call me to discuss and I was even more grateful for the in depth conversation we had and how she took the time to actually explain things to me. She told me everything from her experience and what her thoughts were. She explained that she has never read any scientific data that proves acupressure works and warned that I may waste my money heading down that path. She didn’t discourage my path if I decided to find a private practice that did OIT. She simply said that they were not set up for it. She said they were not equipped with the 24 hour on call nursing staff needed to help parents experiencing reactions at home while doing OIT. She had no concern with staph being an issue relating to my kids allergy because I had gotten the eczema under control. She also explained that she had seen plenty of cases where children had the peanut allergy but did not have eczema. She assured me that my diet while pregnant and diet in general had no barring on their allergies. She told me that the only thing to blame is our genes.   Where she provided hope was that she has read very exciting things about Allergy Patch Therapy which is showing promise and is in final stages of testing and may be available within a couple of years. Our plan meanwhile would be to keep my kiddos peanut free (Andrew also cashew and pistachio) and continue to carry an epi pen and Benadryl on hand in case.   We would also schedule Adalyn for blood work to see what a repeat blood work test showed. If it still said 0 or read very low she may consider going through with a peanut challenge for her.

I planned on taking Adalyn for her blood-work the following Thursday when we had some time in her schedule. She was off of school that week and we had a jam-packed week planned for her. The Wednesday before we were out having lunch at one of our usual places and we ordered the same meal and items we frequently get. I have checked all labels and ingredients of these items. I looked at Adalyn after she ate and she had a hive above her lip and it was getting bigger.   She then started to claw at her throat. With her hive continuing to increase in size we headed for the door and she was given a dose of Benadryl. Within a few minutes the hive and itching disappeared. I was ready though. I was prepared to give her the epi. I had always wondered how I would truly feel if I saw Ady react and if I would be strong enough to give her that epi pen. I can now tell you I would have been because I was ready. I watched her like a hawk and I would have done about anything in the world in that instance if her symptoms got worse. I would have injected her and not thought another thing of it. It really scared me. It was the first reaction I had ever witnessed Adalyn to have had.

I followed up with our Dr that afternoon. She suggested Adalyn came in contact with cross contamination was her best guess with peanut. It was decided at that time Adalyn was no longer a candidate for the peanut challenge and we should repeat the blood test in one year. Testing her now would only be putting her through it for more of a curiosity standpoint. I was to call again if I were to suspect any other allergies and keep her posted if anything like this happens again.

Adalyn slept all afternoon from the Benadryl and Andrew took his usual nap. I researched. I started googling about alternative allergy treatment near me. I came across a doctor nearby that practices something called LZR7 Laser Allergy Treatment. I read about it on the website and called to get a bit more information. The lady I spoke with told me I called the right place. I was extremely skeptical. She asked me to bring the kiddos in for a consult and just check it out. I scheduled it for the next day.

I went in skeptical. The person I met surprised me. He explained to me how his son had a severe allergy to milk as a child and how he was on a mission to help him when he was young.  He came across this treatment and his allergy was treated. He described car rides and how he would have to pull over frequently when his son would get sick after eating dairy.  As I told him Andrew’s story it was all too familiar to him. He wasn’t a salesey kind of guy at all but more like a dad talking to a mom about something that might help her kid like it helped his. I was intrigued but suspicious. I also knew when I learned about the cost that my husband would never in a million years go for it. I considered not telling him and taking the money from my savings account and just going through with the 12 treatments. But, I have to take a step back. I have tried so many things and we have spent so much money. I have scheduled to have my husband meet Doc on Tuesday. If he convinces him and we go through with this I will write about our journey.  If it flops it will save other families from the same mistake. Oh but if it works… If my kids no longer have to deal with food allergies and eczema I will share that with every parent I can find.

Update:  We started our 1st of 12 treatments on 4/14/2016.  We will complete treatments in June and I will update the results and our journey at that time.