Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Sunday, April 3, 2011
Oh boy, you're heavy!
We haven't had a weight check in a few weeks, with the cold he developed and waiting out results from Dr.J's research, we haven't even been to a doctors office! It may be a record for us! I am curious as to his weight....because I am sure he has gained. Last week, I even had to get out the 2T tote and put away the 18mo. clothes (finally since he is 21mo.old) and get out the 24mo/2T clothes! He has a filled out belly and cheeks- I look forward to finding out how much he has gained since our last check!
I hope the last few days don't cause him to slide backwards too much, he seemed improved today but he appears to have reacted to the probiotic switch (from Kirkman's CD-Biotic to Kirkmans ProBioGold). I am still unsure of what he reacted to in it- if it is a strain or a filler (I only assumed it was made the same as the CD Biotic which he was tolerating- bad mommy mistake!). But, as with what defines FPIES- it is trial and error. I was giving him smaller doses, being that there were new strains that he hasn't had before (different lactobacillus ones and a new one- streptoccus thermophilus. A fellow FPIES mom warned me to be cautious with a probiotic that contains that strain, so we were being cautious...trial and error. The first day, I noticed blood in his diaper- although he has a fissure so it isn't odd to see blood in his diaper. I also notice his stool isn't as soft as it should be given that probiotics help regulate things. That night, he woke up crying....I had heard him coughing, I go to him and he is trying to get his shirt off and hand me his blanket- he had thrown up on his pillow, blanket and shirt. It wasn't a lot- more than spit up but less than FPIES trigger vomit. Was it from the cough or is this the beginning of a reaction? He had had a few of these cough/throw up already earlier in the week. We had been trying to see if he could tolerate the plum organic peaches again- in his merry muffins; but it has been 2 days since his last nibble of that...that otherwise appears to be going well, none of the symptoms that he had after his multivitamin fail when I was concerned his body couldn't tolerate even his safe foods (millet and peaches) - as I said at that time, maybe there is something to the fact that he needs only very low fiber foods as to not irritate the intestinal lining. Regardless, all of his prior cold symptoms had resolved so I thought odd for him to have this cough but did just decide it must be from the cough. Little man's daddy and I discuss how he has been calmer that day, noting maybe even lethargic. I remained hopeful that it was just calmness. We kept busy the next day (Friday) and he was great all morning- playing, smiling, a visit to some dear friends and they were impressed at how strong and healthy and happy he looks since they last saw him. We had a great morning. He came home and struggled to settle down for his nap....too much excitement? Finally got him to sleep and he slept well, even through a playdate for the other boys (6 boys in the house!) Actually, we're very lucky to have such great friends as their boys are very well behaved and no one made any noise to wake up Little Man. He woke from his nap a little clingy, but not surprising since we had company; he warmed up nicely and began to play a little. That evening he remained tired, got very fussy and clingy. I decided he was heading in the wrong direction with these probiotics and I was getting too nervous. He hadn't eaten well that day either- why? So, yesterday we took a day off from them but his body was still progressing....is it the probiotic or something else? I suppose if it is the flora that he is reacting to, it might make sense that it is taking awhile to get out of his system. I am really not sure but Saturday was a beautiful day and he enjoyed an hour or two of it but otherwise was clingy, whiny, fatigued, maybe even feverish, and in our arms. He ate poorly and last night he didn't even wet through a normal diaper (where typically I have to change his nighttime diaper once during the night). In the morning, he had a loose diaper. Enough, I'm calling it a fail....but what is he failing? It was progressive, I don't feel they were "die off" symptoms, but maybe.....but not worth risking either. He gets so sick from fails, I can't push it when there are this many off symptoms. Today, he returned to a baseline for the most part; he ate A LOT today- and then had a 30min. screaming session that ended in puking before finally relaxing into sleep. What is going on? Only time will tell. He hasn't had probiotic in 2 days, and we will see how he does backing off of them for a bit. I am sensing now is the right time to do the stool tests I spoke about previously. We can't afford them any better than we could a month ago but Little Man can't afford to be sick from this trial and error either. He also can't afford too much longer with no food trials. He needs this tiny menu we keep striving for....
We will get a weight check tomorrow at the Immunology appointment, stay tuned!