About two weeks after my son was born, he began to develop a red sandpaper like rash on his face. Our pediatrician said it looked like eczema and suggested moisturizing the area with Aquafor. A week later, his scalp and side-burn areas of his face were secreting a yellow discharge of some sort, along with the persistent rash still on his face. To the doctor’s eye it looked like “cradle cap gone wild” and she suggested an over the counter dandruff shampoo. Sadly, this only seemed to inflame the rash, and things were getting dismal. In the mean time we were trying everything we could find, by research and suggestion, to no avail. Aveeno Baby Eczema lotion, Eucerin Baby Eczema lotion, organic coconut oil (a natural anti-fungal moisturizer,) cotton clothing only, no contact with perfumes or dyes, hypoallergenic all natural baby soaps, etc., no matter what we tried, he was getting progressively worse. (Warning: some of these pictures might be disturbing.)
Food allergies were ruled out at this time because the affected area was limited to his face and scalp, so if it were allergy related at all, it seemed to be something he was coming into contact with. By eight weeks old he was oozing so profoundly from his head that I was changing his saturated (around the neck) clothing and cloth diapers, we kept under him as a cotton barrier, three times a night. We decided to take him to a pediatric dermatologist. Thankfully, we live not too far from the University of Michigan hospital. We called through Mott’s, the children hospital and set up an appointment.
I was hopeful as the resident was asking questions about his health. I relayed every bit of information I could think of. “No, he didn’t look like this at birth. Yes, he has been exposed to illness; his siblings are on antibiotics for strep throat. Yes, he did have an antibiotic at about 4 weeks for dark green boogers. Yes, the condition has begun to spread onto his shoulders and leg…” Two more doctors came in, examined him from head to toe and discussed his condition. They decided it was atopic dermatitis (eczema) and sent us home with a topical steroid and an oral antibiotic. It was a 10 day treatment with a follow-up in about 2 weeks.
Relieved to have expert diagnosis, we started the regimen. To my great relief he started to improve within 24 hours. By two days he looked clear, and we seemed to have gotten through it! Whew, what a nightmare! But by day four into our new routine, his face began to break out. By day seven he looked about the same as when we had brought him in. We were back to constant surveillance, never to be left unattended for his incessant scratching. Well, thankfully, we had this scheduled follow-up appointment.
Upon our return to the U of M Dermatology department, we were again questioned by a new resident and examined by two new physicians (apparently one of our first doctors was on vacation). They discussed in Latin terms amongst themselves, what they thought was going on. They apologized for any rudeness. Whatever, I mean do your thing. Just help my baby, and I’m good. It was decided that he had two overlapping conditions, the afore mentioned atopic dermatitis and a seborrheic dermatitis (in the family of cradle cap). Ok, just tell me what I need to do. In addition to the topical steroid, they added an anti-fungal lotion and shampoo and sent us home, no follow-up necessary.
Immediately upon first application of our new products, Noah had a crazy reaction. His redness and irritation was magnified. And that’s when it dawned on me; they don’t know what’s going on with him. They’re just guessing! So, what am I doing to my son? Experimenting? I was completely depleted and very worried. (Disclaimer: I believe the U of M Health Systems is loaded with talented doctors that do much good. This is just my experience as one of their patients.) I decided I should call their office and let them know what happened. The woman who answered the phone said most of the physicians had left for the day, and advised me to stop treatment (the best advice given out of that whole office). She let me know that someone from the Dermatology department would call me the following day. The next day a resident did call me back; I explained what happened and asked him his thoughts. He replied that he had not seen Noah, and couldn’t say. Okay, well certainly he must have our file with the opinions of his colleagues in front of him. So, I continued to say that Noah had been diagnosed with atopic and seborrheic dermatitis and I was wondering if the anti-fungal treatment for the ‘seborriheic,’ however it’s pronounced, could have upset the ‘atopic’ part. I mean, that seems pretty straight forward to me, right? I assume he did go to medical school after all. But nope, he couldn’t answer that either without having seen him. Well then why (I thought to myself) couldn’t one of the two other residents or four residing physicians that had seen him have called me back??? Next, I kid you not, he asked in the most dismissive way “So, what would you like to do? Make an appointment?” I answered that I guessed so, to which he stated “I’ll have the scheduling department give you a call.” By the time they called, I had changed my mind.
Noah was now three months old, and no better. I made an appointment with our family dermatologist who it first glance said Noah is allergic to something you are eating. She advised that I stop nursing- to be continued later, and introduce a non-dairy hypoallergenic formula (Nutramigen) into his diet. She recommended that we also add probiotic into his diet, due to the antibiotics he had been given in his short amount of being, and suggested adding a small amount of hemp oil into his bottles to start moisturizing from the inside out. And although I was heart broken about possibly being the source of his problem, I appreciated the less abrasive approach. She asked about his stool, no one had done that before either. Yes, it was a mucous type diarrhea since birth, unlike the ‘mustard curds’ of my previous children. Why hadn’t I thought of that before? She explained that what is going on in the tissue outside of his body was happening on the inside too. That made sense, duh!
To speed things along, I will say that even with the strides made, my son was still in a bad condition. It seemed hopeless. At this point we were struggling to grow skin on his cheeks. His skin tissue was in such disrepair that the slightest wipe from his mitted hands would scrape it off. It was an endless cycle. It was at this time my dear friend, saw an article with a picture of a baby girl, whose face looked just like Noah’s. The doctors at Children’s Hospital in Detroit had diagnosed her with a milk allergy and staph infection. Detroit? That was practically in our back yard! We took him there the next morning.
Right away, the ER department took a culture of his skin. They were surprised that it hadn’t been done before, and so were we. Sure enough, Noah tested positive for a staph infection. Thankfully it was a common strep, the type that can be found on most normal skin, and easily treatable. It’s just that he had no barrier on his skin. As it turns out (from blood tests, also not previously done) he also had an extremely weak immune system and is highly allergenic.
By doing extensive (heartbreaking) testing, they doctors at Children’s Hospital were able to eliminate life-threatening illnesses (that I don’t even want to mention and am well aware there are many children unfairly suffering from) and less serious conditions, such as a zinc deficiency. We are continuing to work with dermatologists, allergists, etc. and Noah seems to be stabilized. He is by no means out of the woods, so to speak, but he is not getting worse and alas that is progress.
I wish I could describe this happy ending full of great results. Unfortunately, it seems that it is very difficult to determine allergies at his age, and truly is a trial by error situation. So, for the time being he gets a daily bath or more (of just water, no soap, no bleach), and moisturized (by vasoline, which yes, is petroleum based, but is 1 ingredient to simplify things) from head to toe several times a day. He takes allergy medicine around the clock and gets topical steroids and a topical antibiotic as needed. I brush my teeth one handed, vacuum with the Bjorn, and swaddle him to change his brother’s diaper. My four year old daughter holds his hands, while I run to the bathroom and I schedule my showers by visits from grandparents. I cut his fingernails and change bed sheets every three days. I literally sleep holding his hands, and still wake up in a panic that he has scratched his face. (As a side note, related to allergens and sleeping: have you ever seen those blown up pictures of dust mites? Whoa, that’s enough to give a grown woman nightmares! Change your sheets people, just sayin’)
For what it’s worth, this is my story. We do have some better days than others. I am perplexed that in this day and age, they still don’t have answers or remedies for things like this. And I am resigned to the fact that God has us going through this trial for a reason. So for now, we just keep on keeping on. I have been told that many children are able to grow out of this, and I am remaining optimistic. If anyone can relate, I hope you can find solace in knowing that you are not alone. If anyone has knowledge and experience to share, my ears are wide open!