Claire's Story

Parent’s Speak Out About Allergic Contact Dermatitis and Patch Testing

/3 Comments/in /by

Claire's Story

It Just Kept Coming Back

“From a very early age, my daughter had eczema. Hers was a very mild case; sometimes she would get small patches on the back of her knee or on her wrists, other times her skin was perfectly clear. Each night that she had a bath, I made sure to fully moisturize her skin in order to protect it and if needed I would put a small amount of hydrocortisone on affected areas. This usually did the trick and her skin stayed pretty healthy looking. I didn’t want my daughter to suffer from itchy and uncomfortable skin…and I certainly wasn’t going to let that happen. After all it was my job as a mother to keep my child healthy, comfortable and happy. Her skin was great for about 10 years, with a few manageable flares every so often.

 

As time passed and as my daughter entered upper elementary school, her skin gradually became worse. I continued to treat her skin with the same moisturizer and hydrocortisone cream. Sometimes it would get a little better, but then it would come back worse than the previous flare. She also became much more uncomfortable, it seemed like she was always scratching herself. I noticed more and more scratch marks each day she woke up.   We were doing everything that had been suggested…frequent lukewarm baths, pat dry, hydrocortisone, moisturize, a cool temperature in the bedroom, cotton pj’s, and we kept her fingernails short. Still, it got worse.

 

At one point we had to go to the pediatrician because the backs of her knees were weeping…and it happened seemingly overnight. She was given antibiotic ointment, oral antibiotics, and a new steroid to help calm everything down. Once it calmed down we went back to the same skin care routine.

 

The condition of her skin continued to decline. The areas around her eyes became dry and scaly at times. It was frustrating trying to apply makeup for dance recitals, as the flakes were so much more visible with her makeup on. Her shins became unmanageable. She literally couldn’t sit still with out scratching or rubbing her legs, back, arms, neck or face. It drove me crazy and I drove her crazy as I told her over and over to stop scratching. She knew she shouldn’t scratch but the itch was unbearable. We had so many battles about her skin…it was seriously affecting our relationship and many nights ended in tears for both of us.

 

When we first went to see the dermatologist she looked at her skin and asked us questions about what we had been doing to treat the eczema. She said that an injected steroid would help calm things down, so we opted for that. She also prescribed a stronger steroid and a topical immunosuppressant cream for her eyes. She assured us that we were ok to use the steroid cream, and offered advice on tapering down, and which strength of steroid to use on different areas of skin depending on severity of the condition.

 

Her skin cleared nicely after the shot and the stronger topical steroid. The topical immunosuppressant seemed to work temporarily, but the skin always returned to a flaky and inflamed condition without it. Eventually, the rest of her skin was back to its previous state, and getting worse by the day.

 

At the next dermatologist appointment, the doctor looked at the condition of the skin and said, “Did you ever have her patch tested?”. I had not heard of patch testing and didn’t know anything about it. She went on to explain that it is a test that can diagnose allergies to substances that she might be coming into contact with that are responsible for creating her dermatitis. She gave me the name of local dermatologist that performs patch testing. We left from the appointment with a few new samples of products, the same treatment plan, and the name of the contact dermatologist.

 

Did I schedule the patch testing right away? No, I did not. (Looking back I wish I would have dialed that number as soon as we had left that appointment) I thought, “We’ll give it a little more time to see if it clears up.” All the while my daughter was miserable. As I was putting her steroid cream on one night she said, “Mom, are you sure this is making it better?” My quiet and uncertain response was, “It’s supposed to.”

 

Finally, mid summer, we scheduled a patch test consultation. We met with a nurse practitioner who was under the guidance of the contact dermatologist. She explained the patch test procedure and what my daughter could and couldn’t have as far as topical and oral medications, and also explained the need to limit sun exposure prior to and during patch testing. The dermatologist joined our meeting later and asked us questions about when her condition started, asked if we had trouble with her ears as they had been pierced, and just general questions about possible exposure to allergens.   We scheduled my daughter’s patch testing for the week before she would return to school.   It would take one full week with four appointments to complete the test, as our insurance required half of the patches to be applied the first day, and half applied at the second appointment, two days later.

 

I assumed my daughter would want to hang out around the house during patch testing. After all, she was a middle schooler, a vulnerable age for so many girls in regards to appearance. But no, she put on her dance leotard with her patches showing and went to her studio for dance class. She explained to everyone what the patches were and was able to make jokes and laugh about it with her friends.

 

At our third patch test appointment when both sets of patches had been removed, the doctor indicated that he thought that he would be able to give us some helpful information at the final appointment on Monday. When we got the results at the final appointment, we learned that she was allergic to 10 substances! Nickel, Propylene Glycol, Methylisothiazolinone, Parabens, BHT, Oleamidopropyl Dimethylamine, Lanolin, Octyl Gallate, Bronopol, and Decyl Glucoside. Some of these had elicited stronger reactions than others, but the doctor felt that they were all clinically relevant.

 

It turns out that many of the substances that she was allergic to were ingredients in the moisturizers, steroid creams, and the topical immunosuppressant cream that we had been using. The very things that we were using to treat her eczema were making it worse! It was explained to us that no one is born allergic to these substances, but through exposure one becomes allergic. So, not only were these ingredients making her skin worse – these substances were in fact responsible for creating the allergic contact dermatitis that my daughter was suffering from. The seemingly hypoallergenic and safe products that I was using on my daughter’s skin, from the time she was a baby, created this nightmare of a condition. When this revelation had time to sink in, I became deeply saddened and outraged.

 

As I came to grips with all of this new information I began to remove her allergen containing products from our lives and replaced them with “safe for my daughter” products.   I learned that in order for my daughter’s skin to have the best chance for healing, we needed to completely avoid all exposure to the substances that she tested allergic to. We changed out personal and household products, eliminating every product that contained her allergens. I changed my products as well so that there wouldn’t be risk of exposure to her from a product that I had used on myself.

 

As we evaluated every possible place of exposure, my daughter informed me that one of her teachers at school was using an automatic air freshener in the classroom. Air fresheners contain all sorts of contact allergens…and in my daughter’s case, propylene glycol and methyliosthiazolinone would be the worst offenders in this kind of product. She didn’t want me to talk with her teacher about it, as the air freshener was one of the things that he was known for, and he was a popular teacher with the students. I told her that I had to, and it that it was the school’s obligation to provide a safe environment for ALL of the students. I e-mailed her school counselor and she responded with a phone call within an hour of receiving the email. She understood the situation at hand, and immediately suggested to get a 504 plan in place.

 

At the 504 meeting, I brought my daughter’s binder containing all of the papers we had received at her patch testing appointment. I also showed the teachers and counselors pictures of allergic contact dermatitis reactions. I explained that some of these chemicals are in aerosols and cleaning supplies commonly used at school and at home. The teacher who had the automatic air freshener in the classroom looked up ingredient listings for the household wipes and other cleaning products used at school.   It was eye opening for him to see the prevalence of these chemicals in products.   As a result of this meeting the educational team had a better understanding of allergic contact dermatitis and they all agreed a 504 plan would be appropriate. We ended up with a comprehensive plan at the end of the meeting. The teachers would use a simple dilute bleach/water solution and paper towels to sanitize and clean desks. The head cafeteria worker would investigate the cafeteria cleaning supplies and report back to us. And the teachers were ecstatic about this one: “Scent Free Zone” signs would hang on the walls of the halls and classrooms in my daughter’s wing of the building. The teachers were excited about the possibility of the elimination of body spray being applied by the boys in the locker hallways.   The teachers were very accommodating and I couldn’t have been more pleased with their response.

Before/After…

beforeclaire after

Through continued avoidance of my daughter’s contact allergens, and with time allowed for healing, her skin looks better than it has in many years, and more importantly, she is more comfortable than she has been in many years. I realize now the significance of that one simple question that our dermatologist asked: “Did you ever have her patch tested?”  If she hadn’t mentioned patch testing, my daughter would likely still be suffering today. Patch testing, diagnosis, and removal of allergens has been the key to my daughter’s recovery.”

 

  • By Misha B.
  • Infographic by Peter Gust

 

Parents Speak Out About Allergic Contact Dermatitis (ACD) is a special category in the Dermatitis Academy Blog where passionate parents reveal a personal look their family’s journey in dealing with ACD and the role of the patch testing.

 

Please visit our home page HERE for more information on allergic contact dermatitis. Please share this post in order to create awareness for this seldom considered, but highly relevant disease process.

Remington's Story

Remington’s Story – Parents Speak Out About Allergic Contact Dermatitis – Benefits of Being Patch Tested

/in /by

Remington's Story

“Is that contagious? A question we have been asked throughout my son’s life.  I am sure many people with skin issues have heard frequently!  Our son is just shy of three years old and has been battling a skin issue since he was a few months old.  Once he turned a year old his skin began to get worse. As months continued it even worsened, soon it was to the point that we could not take him out. Doctor appointments weekly sometimes multiple doctors appoints in a week. Specialist after specialist nothing was working.  He was diagnosed with eczema at just 6 months old. We were first prescribed over the counter medications. But as he continued to get worse something else needed to be done. Once he reached a year old we were sent to an Allergist. They performed a skin prick test on his back. They found him to be mildly allergic to dog. The allergist changed up his medication yet again.”

Remington's story

“As the months rolled by he was not getting better, if anything he was getting worse. We were finally sent to a dermatologist. There they performed a blood test on him to find allergies.  Yet nothing came back positive except for dog.  They continued to treat him as if he had “eczema” at one point he was on three different steroid creams. We would rotate Zyrtec, Benadryl and Attarax just to try and relive his itch. Our nights became nightmares are sleep became nonexistent. There were endless hours of tears. Nothing we did would work. NOTHING! We were hospitalized for 5 days. He also had a staph skin infection. Even the bleach baths weren’t working at this point. Our son was prescribed prednisolone so many times in 6 months that he reached his peak for oral steroids and the doctors would not prescribe him them again. I honestly felt like I was feeding my child medications for no reason. The flare ups became worse and lasted longer. It was truly a nightmare! Once we reached the max limit on oral steroids his dermatologist decided that it was time to start an immune-suppressant.  This was something we were completely against. We felt his immune system was already weak and we were not willing to go this route. We wanted a second opinion. We changed his pediatrician; we needed a new set of eyes.”

“The new pediatrician did a complete blood work profile on him. His live vaccinations titers came back as if they were not existent.  He was given a booster then had his levels checked a few weeks later. They came back normal, so the route of having an auto immune disease was out. Still getting new creams and ointments nothing was working. At this point we said we are done with steroids. We went all-natural. We were doing herbs and using only coconut oil on his skin. It seemed to be working but then it was infection after infection. After 4 months or so he wasn’t improving. He was one of his worst flare ups we had to go back to the dermatologist. We couldn’t put it off anymore we had to give it a try, we had to give our child some type of relief. We did it. We put him on cyclosporine. He was going for blood work weekly to start. This medication is used in transplant patient and monitoring of kidneys and liver function are needed while on this medication, his levels needed to be checked frequently. At first it seemed promising he seemed to be doing slightly better. We thought we were seeing the light at the end of a DARK tunnel. But then it hit, yup you guessed it – another flare up. This time worse than the last. He was at the doctors 3 times in a week. Eight different medications – it was heartbreaking. What am I doing wrong; I asked myself this question so many times. I didn’t understand why wasn’t anything working. I knew something I was wrong I knew this wasn’t just “eczema” I knew it was more!”

“He was on cyclosporine for about three months; usually this clears up something with eczemas fairly quickly, but not us. That’s when I decided it’s time for another set of eyes. I contacted at Children’s Hospital which was three hours from us. I scheduled and appointment but it was 6 months out. Our pediatrician called them on our behalf because he wanted him to be seen as soon as possible. We got in the next week! As soon as we got in the room the dermatologist looked at him and said has he ever been patch tested for contact allergens, he needs to be patch tested. She knew right away he had a contact dermatitis rather than atopic dermatitis. We had the patch testing done. Mind you we have to drive a total of 6 plus hours there and back, but we went through with it. We NEEDED answers. Leaving that doctor appointment I felt a sense of surety, I honestly felt like we were achieving some. I felt a sense of relief. My husband took our son back down on Friday. We had his final read on Monday. GUESS WHAT – our son tested positive for 3 different allergens. He was positive for propylene glycol, compositae (asterace), and sesquiterpene lactone. Finally we got answers, because he was patch tested! So the reasons the all-natural route did not work was because it had sunflower base in it (sunflowers are in the Composite family and contain sesquiterpene lactones).

He is allergic to florals and herbal things. The reason the cyclosporine did not work may have been because it contained PG, but also because he was unknowingly being exposed to his allergens. Also two of the steroids as well as moisturizers he used contained PG. After he was patch tested, we had to clean out our house. I went home and got rid of everything. If it smelled it was removed to prevent further damaging his skin. I love the scentsy smelly things, but they were gone, no if and or buts! I went through all the cleaning supplies I had checked every label. We took him off all medications and ointments. We put him on an ointment free from PG. We had a game plan. Within a week we could see a difference. It was amazing. We are now on a normal bed time routine. We actually get sleep, it is a miracle. His hands, feet and face still have healing to do but it is manageable and I know we can do it. If it wasn’t for Patch Testing, I don’t know where we would be right now. Patch testing has truly given my son the gift of being able to be a child again!”

 

  • by Travis & Jessica Musser
  • Infographic by Peter Gust

 

Parents Speak Out About Allergic Contact Dermatitis (ACD) is a special category in the Dermatitis Academy Blog where passionate parents reveal a personal look their family’s journey in dealing with ACD and the benefits of being patch tested.

 

Please visit our home page HERE for more information on allergic contact dermatitis. Please share this post in order to create awareness for this seldom considered, but highly relevant disease process.

Owen’s Story – Parents Speak Out About Allergic Contact Dermatitis and Patch Testing

/1 Comment/in /by

Owenstory

“My name is Lisa. As a sufferer of contact dermatitis (triggers still unknown) and the mother of a child with contact dermatitis (confirmed by patch testing), I’m a strong proponent of thorough, accurate patch testing available to all. First, as a preface, my 9 year old son (Owen), is allergic to corn by both ingestion and upon contact. He has been since birth, though the contact part began later at age 3.5 years. I feel it necessary to mention, in addition to and in reference to the discussion of contact dermatitis, because many food-allergic children also have contact dermatitis and eczema problems. Additionally, the corn allergy has and still makes deciphering his skin issues complicated.

Corn is in almost everything (food, health/ beauty aids, adhesives, preservatives, etc.) or used in the packaging of many things. As an example, the plastic coating on cheese is often dusted with corn starch to keep cheese from sticking to the plastic. Since Owen reacts differently to pure corn and its 110+ names (preservatives/derivatives), we blamed all skin/eczema issues on corn for the first 3-4 yrs of his life. Granted, corn allergy was still rare 10 years ago and is still not a common food allergy, though it is gaining momentum quickly.

Getting the corn allergy diagnosis was difficult enough without adding contact dermatitis to his on-going list of medical concerns . Our first Allergist kept saying he only had eczema because “textbook” hives don’t manifest with any of Owen’s food allergies unless he eats/ touches pure corn meal. His corn rashes were simply odd. We finally found 1 of only 3 Allergists in the St. Louis, Missouri (USA) area with experience in corn allergy, allowing us to move on to deciphering numerous skin issues which didn’t go away after removing hidden corn from his diet /personal care items. The learning curve was tremendous. It took almost 3 yrs because corn is used literally everywhere.

Gradually, we slowly learned all Owen’s corn exposure variations. Some derivatives only cause a certain type of rash. Some make him hurt all over, in addition to showing the rash. Some cause severe itching but no rash. Some cause full-blown hives. Some cause blisters upon contact. Some are GI/intestinal/skin-rash all at once. He never had “textbook” eczema, for which I’m grateful, though it would have made things easier for diagnosing purposes.

Again, the reason I provide so much food-allergy information above is because many food-allergic children also have skin problems. However, many kids with eczema can eat anything with no skin manifestations, thus giving rise to much confusion and frustration. There is a great deal of misinformation available referencing the overlap of food allergy and contact dermatitis.

Our problem is some of these weird rashes were on Owen’s face, hands, and bottom. Some of these were noticeable and led to other kids teasing or asking about his face and hands. Or it hurt, as was the case with his bottom, whenever it touched a toilet seat. The raised rash that itched on his bottom would often burn, and it was always where the ring of the toilet seat touched his skin. What pushed us over the edge was at age 8 (March of 2015), Owen developed perioral dermatitis on his face. This condition is unusual except in 20-yr old-ish girls or pre-pubescent boys (with or without other skin issues). The usual medications didn’t help though. Certain medications actually made it worse. Others made it burn, dry, or crack. Nothing made sense or cleared it completely for months.

We finally got lucky with a 3rd attempted antibiotic, plus 2 topical medications, though it was still a very slow process of healing. However, we are lucky enough our Dermatologist is located in one of only 2-3 practices in St. Louis to offer detailed patch testing. Once we cleared Owen’s face (a process taking 4 months, forcing him to go to school regardless of how bad it looked), our Dermatologist and I agreed he’d had too many strange rashes to keep thinking it everything was corn-related. She also thought he’d dealt with enough in his young life and wanted him to avoid more heartache, as she was suspecting more would pop up if we didn’t investigate further.

Luckily, during this mess, Owen had a long virus & missed 7 days of school. While out of school, his dry, cracked hands (which had come and went all winter) healed completely. However, after just 1 day back at school the redness, dryness, and burning returned. This told me the school soap had to be a trigger. His Dermatologist already knew about his hand problem from one of our 2-week check-ups for his perioral dermatitis treatment, so we immediately scheduled patch testing, knowing we had another piece of HIS personal skin puzzle.

I do not have the chemical names of all 6 allergens he tested positive to, but 2 of them are in the Glucoside family, and 2 of them are in the Paraben group. He also is allergic to 2 metals: Nickel and Copper. At the time the test results were given to me, I remember being shocked it was only 6 positive patches. Why wasn’t there more to explain all of his strange rashes? Then I read where those 6 occur—-Nickel is very common. However, he wore active pants most days instead of jeans, thus we rarely saw rashes that low on his torso. Then I learned the two glucosides are common in almost every soap/shampoo/personal care product I had in my home. The two parabens are common in many lotions, even the lotion our Dermatologist had prescribed for us to use on his face while it was so dry/cracked from the perioral dermatitis occurrence/treatment period. She felt horrible about that, as it had to have slowed the healing process, possibly even exacerbating the problem. In retrospect, we both think his face was struggling to heal because we were constantly putting his allergens on it three times a day.

Fast forward one month. We switched all products to those known to be allergen-free for Owen. He took his own soap to school in a pocket each day. He used his own soap at home, & we even clean his bathroom with safe products that won’t irritate his bottom. We have a strict rule in our house about what to use to clean toilet seats! After all was done, our Dermatologist said Owen changed the way she views contact dermatitis & eczema, especially non-textbook, strange manifestations of eczema. She said part of the problem is there are 200+ ashes considered “eczema”. It’s not just one thing and is often a “catch-all” term for the unknown rashes.

Therefore, she now thinks every child with any atopy (allergy) issues and combined skin problems of any sort, or contact dermatitis, and/or even “textbook” eczema (because of the food allergy overlap) should be patch tested to see if the products supposedly treating the skin is actually making it worse. Even if there is no history of food allergy or contact allergy, she thinks patch testing could provide knowledge of skin allergens parents would have no way of knowing might be making matters worse. This tailors the treatment to each child’s personal skin/atopy profile. It’s very likely some day-to-day products could be causing the weird rashes that aren’t consistent between children, as skin problems are extremely individual. In summary, thorough patch testing could provide answers many of us have been seeking for years.

—-Lisa Williams (Mother to Owen Williams, 9 yr old son); Written on March 27, 2016″

Infographic by Peter Gust

 

Parents Speak Out About Allergic Contact Dermatitis (ACD) is a special category in the Dermatitis Academy Blog where passionate parents reveal a personal look their family’s journey in dealing with ACD and the role of patch testing.

 

Please visit our home page HERE for more information on allergic contact dermatitis and patch testing. Please share this post in order to create awareness for this seldom considered, but highly relevant disease process.