FPIES diagnosis--what in the world is that?

Well, after a long hiatus, I am back to blogging, and a bit overwhelmed about where to begin.  Basically, after we returned from our Cincinnati trip, Henry seemed to being doing great.  I kept him on my homemade formula and we were not longer using the G-tube.  We also started introducing him to all sorts of foods.  I started out slowly since all Henry had ever really had was thickened liquids.  He loved being able to eat by mouth and welcomed new foods.  This was a real blessing because many children fed by a G-tube and with reflux issues can develop aversions to certain foods and eating can become really stressful.  For a over a month it seemed that all of Henry's problems were gone, that he had been miraculously healed.  Not to down play that, because I do feel that God has done quite a bit of healing in Henry's little life.  All of his inflammation was gone when he was scoped in Cincinnati.  His lungs were clear and he sounded great.  I know that God allowed this, and gave me hope that Henry could in fact be healthy. 


I have to admit that I was so focused on getting Henry to fatten up, that I didn't really withhold any foods from him.  In fact, the nutritionists encouraged me to put butter on everything, to even put cream or half in half in his drinks.  And I did.  I snuck in fats every where I could.  And I gave him milk products with abandon--I mean that's where all the fat is right?  Half n' half, sour cream, butter, cream cheese, cheese sticks, ice cream.  And Henry seemed to love it all.  I didn't really pay much attention to the loose stools and diarrhea, I didn't really think much of it when he vomited and kept retching a few minutes after putting half in half in his drink.  I guess I thought, maybe it was the fat content making his tummy a little off.    Plus he'd had diarrhea and weird yeasty smelling and sometime mucousy stools most of his life.   But then he started waking up more and more at night and I could hear him coughing again and since he has the Nissan, he can't throw up as easily as other kids, but I think he would have if he could.  It seemed like maybe he was having reflux again?  But I wasn't sure why and I just kept desperately trying to fatten him up.   I feel stupid now that it took me so long to put two and two together.   


I think sometimes when you have so many issues with your child you get a little tunnel vision.  Once we were back from Cincinnati and I knew Henry's lungs were okay I think I just went full force ahead to try to help him gain weight.  Slowly he started to go down the same path that we had experienced when he was first diagnosed as an infant with reflux and aspiration.  The coughing at night, then tons of mucous in his nose and throat, and then the noisy breathing, and then the coughing and choking when eating, and then the rattly chest and then the wheezing and needing Neb's. 


How did this happen?  What in the world is going on?  I had questioned how quickly Henry seemed to recover after we stopped feeding him by mouth and I had him just on the G-tube feeds.  These feeds were with a hypoallergenic formula, I guess I didn't take into account that maybe that was part of what helped him get well.  I thought all his issues were related to the laryngeal cleft and aspiration and reflux, I forgot that when he was just 5 months old the allergist had suggested he might be sensitive to milk proteins and soy.  I guess I assumed he would just outgrow it.  But the longer time went on, the worse Henry was sounding and I knew in my heart that there was something more going on with him.


I saw the pediatrician who listened to him and thought his throat did sound inflamed as it had been before and his chest was rattly in the office as well.   "There's something else,"  I said, something they missed.  "The only thing that has changed in the past few months, is now Henry is eating every food, wheat, dairy, soy--there must be something he can't tolerate."  She set up an appointment with the aerodigestive clinic at Children's Hospital and then suggested that maybe I try eliminating foods in the mean time.  I decided to try to eliminate the big 6.  Wheat/gluten, dairy, soy, eggs, nuts, fish and see what happened. 


In the mean time I considered some family history that seems interesting to me and I'm not sure if it's related or not.  My older son seems to vomit randomly and then goes on with his day as if nothing ever happened.  This happens maybe a few times a month, maybe less.  He will look very pale and almost as if he is going to pass out, his legs will be weak and he is very shaking.  Most recently he also starting having a rash on his face that comes and goes and seems to worsen after he eats, but I cannot figure out the trigger. 


I remembered also that Henry had several episodes in the past in which a few hours after eating he would retch and then go limp, it was so scary, I thought that he was going to die because he would literally collapse in my arms lifeless and then he would be very sleepy and hard to wake up.  The last time he did this was in May when I had to call 911 on his birthday.   The ER sent us home and with no answers and told us to just come back if it happened again. 


We had our aerodigestive appointment yesterday and several things happened that I didn't expect.  The GI doctor told me about FPIES.  He said it is an intolerance to certain proteins in food:  turkey, chicken, rice, oats, squash, beans, peas--to name a few.  Henry's weight is not good and the doctors said that the only way to figure out Henry's triggers would be to do an elimination diet.  Try as I could, I realized that with Henry's diet being so limited it would be best to put him on Neocate in order to boost his calories while trying to figure out what foods he might be sensitive too.    The GI doctor mentioned that Henry's bottom was red, I told him that this was normal and that many times after Henry eats and has a stool his bottom is instantly bright red and painful.  He said this is also proof that he has intolerance to foods.


On the ENT front, the surgeon told me that he wants a repeat swallow study in March to see if Henry is still aspirating in spite of the dietary measures we are taking.  He said that while Henry does not have a cleft, he has a deep notch, and that if he does not out grow the aspiration, it would be worth repairing in the future.


So right now I am just absorbing all this new information.  I am searching the web for new recipes and ideas on how to feed a boy who might not be able to tolerate many foods.  I am also holding on the the hope, that God knows all the answers, even if I do not.   To be continued . . .