Today was K’s final appointment with specialists-though we do have a follow up on the 10th just to ensure the new prescription moisturizer is working to its full potential. Let’s just get this all in one space so I don’t have to continue to keep track of the timeline of events that brought us here-20 months after our initial appointment to figure out just what’s wrong with our daughter.
We’ve known since K was weeks old that she had eczema but wasn’t told exactly what it was or how to treat it so on our merry way we went. When she was 10 or 11 months old we were told by our beloved pediatrician that eczema is frequently caused by a food allergy and since she would soon be a year old and transitioning to whole milk we could go ahead and ask for a skin prick test to try and rule out some possible causes. We attended that appointment with no positive results of any allergies and continued giving her foods and drinks as was age appropriate (which I’ve learned in my infinite mommy wisdom that the Culbreth definition of age appropriate is not the same as the general public’s. I like to think our mentality has created the very adventurous eater we have today in Little Miss.)
When K was 2 we decided it was time to re test for allergies since her skin was becoming even more bothersome-she could not sleep well at night because of excessive itching and began to have red raised blotches. I’d share images but in continuing with our tradition of trying to keep what we share picture-wise of K to be as private as possible you can feel free to Google “red blotch eczema” and get a feel for what we were working with for months on end. The poor girl would scream at the mention of a bath or lotion. We frequently misread that as general defiance but have learned in recent weeks that she was genuinely in pain. I’ve taken myself out of the running for Mother of the Year despite my best efforts to make delicious meals and lots of creative memories. Sad day.
The second allergy test was done by the same allergist and resulted in a very distraught K. Once the test (all negative) was over we were asked when the last time she had antihistamines was. Our answer: the day before. At that point we were made aware that the test was invalid and was done for no reason. I was told I didn’t have to pay the copay and should make a follow up appointment after K had been antihistamine free for at least three days. I was furious at the events that had transpired, namely holding my screaming kiddo down for 10 minutes while an inconclusive and unnecessary test was performed.
The itching, redness and pain continued as we made another appointment with a different allergist but within the same clinic. We omitted Benadryl for days prior and repeated the skin test. She tested positive for dog and cat allergies only. The former owners of our home had dogs so we replaced all the flooring in our home in an effort to help ease K’s discomfort and hopefully cure the eczema. Weeks, significant money, and lots of stress later the floors were replaced and though they looked great her skin didn’t improve.
I went in for a routine visit with her pediatrician and was told her skin looked more like hives than eczema-indicating there had to be some underlying allergy. She was placed on prednisone (an oral steroid,) Benadryl every six hours for two days and antibiotics for two weeks. We were told to avoid the sun, heat, playing outside, and homes of those with animals. There was some mild improvement but nothing significant or long lasting. We scheduled an appointment with the Allergy Clinic at Children’s Hospital and was told we’d be seen about 6 weeks later.
During this time we had an adventure to Whole Foods where K sampled some pecan butter. Within seconds of it touching her mouth her entire lower body broke out in hives that were so severe we drove, um, quickly, to the hospital. By the time I got there I had heard from her doctor’s office that taking her in was unnecessary because she was still breathing and not swollen. We treated her with Benadryl and prayed for the end of August to quickly arrive so we could get answers.
We tried a histamine restricted diet and re stocked our fridge and pantry to meet the needs of her possible allergies. This eliminated wheat, dairy, most fruits, most spices, and various other foods.
Her skin continued to not get better. Sleep was terrible as she was waking in severe pain with itching several times a night. She would bleed and beg us to “take the owies away.” Heartbreaking for both of us we realized we’d been mislead and asked for an epi pen in the mean time just to be safe. We saw our pediatrician who agreed and during that visit just six days ago everything changed.
Few of you have been fully in the know of the past few days and I appreciate your willingness to let us handle this privately until we got solid answers.
K was seen last Thursday in her pediatrician’s office and the nurse examining her informed me her condition appeard to be an auto-immune disorder. I had asked if we could be admitted to the hospital for testing since our allergy appointment was a week away and her skin was getting worse. At the height of the skin irritation there was a few small patches of “normal” looking skin on her legs and feet but otherwise she was solid red with patches especially on her thighs. Her neck, underarms, forearms, stomach, and lower back were equally irritated and my fears were being fed with this nurse’s suspicion. The pediatrician agreed something was surely not right, asked us which hospital we’d prefer to try to get into and told us she’d call us within hours to tell us which Dermatology would take her on an urgent basis to get the ball rolling on testing.
I text close friends and family for prayers and began the drive home. Chris and I spoke briefly and he asked that she be seen at Children’s hospital. I made a call back to the doctor’s office so she wouldn’t waste her time with other clinics. I was told by office personnel to go to the Children’s hospital emergency room and that they’d be waiting for us. I lost my marbles and K lovingly gave me her Ernie to help calm me down. I pulled myself together and realized there’s no crying in front of your kid when they’re equally uneasy. We were immediately seen at the ER and placed in a room within minutes. They suspected lupus, diabetes, other auto immune disorders, plaque psoriasis and threw out several questions about cancer. She had some small patches of dark spots under her nails that were concerning and called for the dermatology team to come examine her.
We waited for several hours with a very compliant, loving, and cheerful K. She was exceptionally itchy but otherwise such a sweetheart. The trio of dermatology experts informed us they also suspected hives and eczema and to be seen in a week after completing a skin regimen of topical steroids and some oral anti-itch meds. Our sweet friend Becca arrived to the hospital just as the doctor’s came in to speak with us and came with food, toys and loving gifts for Chris, K, and myself. This woman is a blessing to our family in many ways and her willingness to be there to love us was the sweetest gift I could have asked for. Being encouraged by another mama who knows the fear of not being sure what’s wrong with your child means the world.
We were sent home late that afternoon and was told that because we’d been doing such a great job as parents dealing with this condition for so long that we could give her the same quality of care at home while keeping K out of a germ filled environment. No labs were drawn and no cause for further concern about anything other than eczema and an allergy were to blame. We were told we may never have an answer to what triggers her flare ups but she’s free to resume a normal diet. Still thanking God for answering such specific prayers during that time.
Our pediatrician found a great pediatric dermatologist to see K the following Monday for a follow up and confirmation of what exactly was the issue. The woman was a blessing-trying various moisturizers in the office to see which K’s skin best responded to and sent us home with an arsenal of knowledge and no concern for allergies. She encouraged us to keep our appointment at Children’s since we were so unimpressed with the former clinic and because of the severity of K’s response to pecans. We’ll see her in two weeks for a follow up and then every year thereafter. Definitive answer #1: K has eczema. A severe kind but not one we can’t care for at home with basic steroid creams and moisturizers.
Our allergy appointment this morning was traumatic. K was seen by great staff and the initial conversation with the doctor was the most thorough we’ve had. We asked for specific allergens to be tested and she agreed and added a few of her own. About 18 in all. The other tests had been performed on her legs, the place where her skin was the most abnormal, thus likely not giving us valid results. I held K as they scratched/pricked her countless times. She screamed the entire time as some of the pricks ended up drawing some blood. After the test was over she played happily and quite enjoyed the gummy worm bribe I brought along. Within moments we saw what I knew all along-pecan allergies. Definitive answer #2: K is allergic to tree nuts-mostly pecans and walnuts as well as dust mites. We’ll be replacing all the pillows in our home just to be safe. Frustrating definitive answer #3: K is NOT allergic to dogs or cats. Awesome. Except, not. I’m wrestling with being frustrated at the other doctors for choosing to test on an unclear area and for not being more thorough in their initial data gathering.
Regardless of the journey we’ve been on we’re thrilled to finally have answers, to let her be in homes of friends with animals, to let her swim and run outside, and to let her be the playful and energy filled kiddo that she is. We have two epi pens to be safe but in the mean time will just avoid all nuts and be thankful this journey is over.
Thanks to all of you for you prayers, calls, texts, and concern. More importantly we’re thanking God for answers, for blessing us with medical staff who are competent and loving, and for giving us a daughter who has truly been a champion through this entire ordeal. I believe we’ll be celebrating with ice cream and some swimming very, very soon.