Home again

And we return home…
We stayed a few days in Glenn-Allen for Christmas break then decided to head home a bit early. Alana was still having issues coughing but again, kids get colds. She had already proven herself to be different then her sisters and you hear that all the time. No matter how many children you have they may come from the same stock but they are each unique. We arrive home and make her a doctor’s appointment for the coughing and leave it at that. I take her in and yep, the pediatrician tells me that she’s got a cold. Probably caught it from her sisters. Take her home and steam her in the shower, make sure her head stays elevated and that will help her from getting the congestion that is sure to follow.

Looking back you can see through copies of the pediatricians phone logs how many times I call about this cold. This never ending cold. Hell, even looking back on it myself I think I was insane. We are just annoyed at this point. Aside from coughing all the time she’s nursing fairly well. In fact, she’s trying to nurse all the time. If there’s ever been a true point in my life that I felt like a cow it was then! She nursed every 2-3 hours and seemed almost never satisfied. She put on weight well and was in the 80% for a child her age. She did have reflux but Noelani and Shaylin did as well. She was having loose stools but nothing that was very worrisome at this point.

Time goes on and we’ve almost become complacent about her coughing. She’s now developing bags under her eyes. She’s not gaining weight all that well anymore and we have resorted to trying antibiotics. At 6 months old we start trying solid foods. We notice almost right away she’s having major bouts of diarrhea and becoming worse in general. She’s crying a lot and not sleeping well. She’s coughing even more than before and we are getting more and more concerned. The phone calls and visits to the pediatrician are ramped up. We finally get a referral to one of the kindest, most compassionate, brilliant doctors we have come in contact with, Dr. Jeffrey Demain.

Okay, so there are some things that we already know about allergies. Shaylin had a turbulent few first years as well. She was having diarrhea so bad that it was burning, literally burning, the skin off her bottom. Nothing virus related was coming back and she was failure to thrive when she was a year old. She had to have IV’s placed in the doctor’s office just to keep her hydrated. This went on for 2 years. She only ended up in the hospital twice, once for dehydration and the second for Rotavirus. We took her to an allergist who did the standard scratch testing but that didn’t reveal anything other than grapefruit, strawberries, and pork. This surely wasn’t what was causing all her problems. This were not things that were in her diet on any sort of regular basis so why/how could this be causing her so much distress. We continued to have problems. Dr. Demain is the allergist who we have been working with through all this and he’s just come back from The Childrens hospital of Philadelphia. I’ll never forget our follow up appointment with him. He was all smiles and very excited. He told us that in C.H.O.P. that he had learned about a new way to test for a different type of allergy. Not the standard type reactions that you get from scratch testing. You place this little food filled disks on people backs. They stay on for 48 hours. After that they are removed and then initially looked at. Depending on how many little bumps they see or feel it’s recorded as trace up to +3. Then another 24 hours go by and the actual reading is done. Again, following the same scale. Shaylin was one of the first handful of children that he had the chance to put these disks on. What it showed made a difference for Shaylin on such a level that she went from so far below growth to now at 8, petite but healthy. Shaylin has a disorder called Eosinophilic Gastroenteritis. What this means is that she has a type IV reaction to foods. Here is a clip from the American Partnership for Eosinophilic Disorders:

"A growing number of children and adults suffer from a chronic and complex group of disorders described as Eosinophilic (ee-oh-sin-oh-fill-ick) Gastrointestinal Disorders (EGID). These disorders are characterized by having above normal amounts of eosinophils, a type of white blood cell, in one or more specific places anywhere in the digestive system. EGID is further subdivided into organ-specific diagnosis. For example, Eosinophilic Gastritis means eosinophils infiltrating the stomach. "itis" means inflammation. While visual inflammation is not always present, inflammation may be apparent under the microscope."

Shaylin was +2 to +3 for Beef, Chicken, Pork, and Citrus. All things that were in her diet at this point. Orange juice, little Gerber beef sticks, diced chicken for protein. Once we eliminated those foods she was a completely different child within 8 weeks. Thank you Dr. Demain!

So how does this tie into Alana. Well aside from the coughing we thought Oh’ let’s get her allergy tested and she’ll be okay too. This really is just a super bad cold.

Looking back I personally feel so sad and ashamed that I didn’t do more to recognize that something was wrong. That I listened to the pediatrician that she just had a cold and she’d be better the next day, the next week, the next visit. Maybe will never change things but yes, maybe if I had been more proactive then she wouldn’t have to endure as much as she has now.

The allergy testing showed an Eosinophilic reaction like we’d expected. Beef, chicken, and pork. Dr. Demain was not content with her ongoing illness though. He now starts to point us in the direction that this isn’t just a bad cold, that 3 months of illness in a baby isn’t ever just a bad cold. And so begins the first set of testing and months of strong antibiotics.