Thursday, October 13, 2011

It all started with a rash...

I was trying to think back to where all of this began.  It all started with a little rash.  Mimi had a bit of a rash, when she was about 3 months old.  Many babies have rashes, so I didn't think much of it, at first.  I was looking back over my old blog posts and I see that it was a long, confusing road to get to where we are, today, but here's the gist of it.  I'll explain in more detail in future posts, but it's pretty hard to sum up 3 years in a single post.
  • 3 months old - We took her to the nurse practitioner, who immediately recognized the rash as eczema and gave us a topical steroid gel (Desonate) to treat it and suggested fragrance-free, hypoallergenic lotions, to keep her skin hydrated.  She said it could be caused by a milk protein allergy, or she might just have sensitive skin.  She really didn't think it was caused by a food allergy, though.
  • The eczema spread beyond just her face, to the rest of her body.  I took her back to the pediatrician's office and asked, again, about food allergies.  They said it was too early to test her and didn't think it was food allergies, anyway.  
  • 4 months old - Visited a dermatologist, who also did not suspect food allergies (stating that food allergies caused eczema in only 1% of cases), and said to reduce the frequency of baths.  We were giving Protopic, triamcinolone and Epiceram (topical treatments).
  • 4 months old - At her 4-month pediatric appointment, the pediatrician said it just might be a milk protein allergy and suggested Nutramigen, which is a hypoallergenic formula.  It is VERY expensive!  She was also suffering from reflux and we were given a prescription for Zantac, which we did not use.
  • We purchased a "Tucker Sling" to help with her reflux, but it didn't work out.  
  • 4 1/2 months old - Another pediatrician's office visit - a different doctor...The doctor said she was suffering from "well fed baby" syndrome, and this was causing the problems with her bowel movements.  He said "everyone" is allergic to milk, to some degree, because it's really not meant for human consumption and the rest of the world does not drink cow's milk, the way it's consumed in the U.S.  He suggested trying soy formula.
  • I continued pumping my breastmilk, in case the soy formula didn't work out.
  • 5 months old - switched the soy formula - HUGE improvement in her eczema!
  • 5 1/2 months old - still experiencing some eczema and developed a small staph infection.  Dermatologist prescribed Mupirocin (antibiotic ointment), and an oral steroid, but we didn't have her take it, because of our apprehension around oral steroids.  (Those fears would later prove to be unnecessary.  We should have given them to her.)
  • 9 months old - Flu shot - bad reaction - high fever, vomiting/choking.  Also had an ear infection.  Was prescribed Augmentin (amoxicillin).  Developed a "non-allergic rash".
  • 14 months old - For some reason, my memory of this is hazy, but we still weren't 100% sure about her milk allergy and tried a small amount of 2% milk, which was promptly projectile-vomited all over the place.  We then switched to soy milk.
  • 15 months - She developed an upper respiratory infection.  She had trouble breathing one night and I will her to the doctor the next morning (in retrospect, I should have taken her in right away) and they administered albuterol via a nebulizer, for the first time.  She did NOT like it, of course, but now she's a pro and loves her "fishy mask".  We were given a "puffer spacer" and an inhaler, but I cannot remember when that was given to us.
  • 18 months old - I still suspected food allergies and insisted on the blood test.  I did not want to subject her to the skin prick test, because of her eczema.  The results were stunning - Class 5 allergies to peanuts, milk, and eggs.  (The egg allergy partially explains the bad reaction to her flu shot.  I will explain more of that under another blog post.)  She also showed a Class 4 allergy to cat dander, Class 3 to dog dander and Class 2 allergies to wheat, walnut and soy.  All of those food items were removed from her diet and her health and eczema improved greatly.
  • 19 months old - we discovered hemp milk!!  (There was a glitch along the way, where we tried goat's milk yogurt, with another case of projectile vomiting.)
  • 25 months old - The infamous "baked milk incident" of New Year's Day 2011.  After an accidental ingestion of bread with milk protein, due to a gross error on my part, we made a trip to the ER.   
  • 31 1/2 months - Couldn't stand it any longer and requested additional blood tests.  She was still itchy with mild eczema and the occasional bout of wheezing/asthma, so I requested a list of foods to be tested.  Results: Class 4 - flax seed (bummer!), Class 3 - sesame and coconut, Class 2 - strawberry, avocado and banana, Class 1 - peach and pineapple.
  • 32 months - Ate mustard - threw up all over the place.  Mustard is off the table.
  • 33 months old - Given the mustard mishap and the fact that so many foods had come back positive, I couldn't help but want to know about more foods, so we did two more sets of labs.  It was one more blood draw, but they added on additional tests with the remaining blood sample.  Class 4 - almond, Class 3 - oats, Class 2: corn, potato, orange, Class 1 - raspberry, honey.  Second lab set...Re-tested peanuts, milk, eggs and wheat, to see if there was any improvement since her 18 month tests.  NO.  Her class 5s for peanuts, milk and eggs were still Class 5, and higher numbers, at that.  Wheat had gone from a Class 2 up to a Class 3. :(  She also had a Class 3 result for Lemon, and Class 2 for green beans and pumpkin.  (NOTE:  This was back when I thought the "Class" level meant something.  I also feel that I should not have tested for so many random foods, in hindsight.  Please see this post for an update.)
  • 34 months old - Developed a runny nose and what I believe to be "allergic rhinitis"
  • 35 months old - Given that the allergic rhinitis persisted for 6 weeks, we decided to try Singulair, but the side effects were unpleasant and we discontinued it.
  • 36 months old - Mystery rash developed - current suspect - hamburger patty's "spices and natural flavorings."  She was able to have a successful Chuck E. Cheese's birthday party, so that was great!
  • Age 3 - Her skin cleared up, tremendously, so we decided to try and re-introduce corn to her diet.  That went well, so we added some soy back and that was also successful, though I use soy in moderation.  We discovered that being outside in the cold was a bigger trigger for her eczema than some of the foods we suspected.  I had her skin perfectly clear when I kept her indoors for several days, during a cold snap, but I know I cannot keep her indoors all the time.  She has resumed her regular outdoor play, weather permitting, and some of her eczema spots have returned, but we're working on it.
  • One month before age 4 - first experience with epinephrine...
  • 4 years 1 month - Started Qvar, to attempt to control asthma (beware of milk proteins in other asthma medications)


  1. Wow, poor little girl! I remember when you first had her and you would blog about her skin issues and not knowing what was causing it...and how you were trying everything to help her. While it's not what any mother would want for her child, I'm sure there is some satisfaction in knowing that there is a diagnosis for what she has been living with! I hope things get a bit easier now that you have a diagnosis to work with!

  2. Aw, thanks for following our journey! I, too, have been finding it hard to blog in the midst of mommy duties, but I'm trying to get back into the swing of things. Yes, it is much better now that we have a diagnosis. I also looked back at my blog and saw how confusing it has been along the way. It's a continuous process of learning and adapting and that is why I want to share as much as I can with others. :) I'm still learning every day!

  3. So much of this hits close to home. We look forward to following your posts. So glad you're blogging again.