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."
Wednesday, December 8, 2010
PICC and TPN
The plan is to build up his TPN (total parental nutrition) each day adding a new ingredient component...thanks to the help of our great Dietitians that helped everyone to see this was a necessary -- although slow -- process to go through for him. It is exactly what I knew he needed, and although it will be slow, I feel it is essential for him. One ingredient at a time for 24hrs at a time, monitor how his body handles it and assess symptoms as we proceed, and move to next steps the next 24hrs.
Monday was Dextrose, so carbohydrate source. I am not sure how his body is truly tolerating the dextrose but it is essential so the symptoms may have to be a "risk vs. benefit" scenario. If we are once again, sensitizing his body to corn derivatives (which I suspect we are)- we will just have to consider 18mo. our last corn ingestion's and remember this date as we look at when we will challenge corn....which at this point, I have no interest in doing it before he is 3 anyway. Once we adapt to a diet of safe foods for him- I have little interest in challenging that for the minimum of 18mo. window that is felt to be the Tcell "memory", or life. This allergy does not build up antibodies as in a typical allergy. The mechanism is thought to be T cell. Tcells "shed" their memory every 12-18mo.(from what I understand); so this along with gut maturity is thought to be the criteria for time period of avoidance for known triggers. Symptoms that I am worried about? Hyperactivity, flushing, mottling, disturbed sleep, decreased appetite, and yesterday- vomiting and loose stools (more on that later).
Monday also brought the news that his hemoglobin is back down to 6 again (blood transfusion had brought it up to 10 from 5 just a little over one month ago). Getting him nutrition, repairing his gut villi, and re-establishing a good supply of iron in his little body are the main goals in his health right now; and this just bumped everything up a notch on the urgency scale. We are right where we need to be....in the hospital, getting IV nutrition, getting monitored for signs and symptoms along the way. He will also have a 4th scope at some point to assess how this is helping, and hopefully get a better grasp on how he is doing and where we are going after so long being "on the edge".
Tuesday was the start of Amino acids (protein) and with the news of his hemoglobin decline; iron was infused in at the same time as well. He will received IV iron infusion two times a week now for the next few weeks; this will help rebuild his own stores, that have been so low for so long...finally. The IV iron has a risk of anaphalxis, so he was monitored closely for the first 20min but presented no anaphalyxis reactions. Although, an hour went by and he began to display some concerning symptoms (face flushing, red eyes, and hyperactivity). This all subsided within an hour though and he went to sleep well. Unfortunately that sleep did not last, a few hours later he was awake and as I was preparing his bottle - he coughed and then came the vomit. It was not just spit up, it was not projectile, it was forceful but not violent and not "garden hose" amounts. However, there was flecks of brown tinged blood in it. This was concerning. It did not continue and he finally ate some hemp milk and calmed down but did not go back to sleep for another 4hrs. It was a long night. He was uncomfortable, tylenol did seem to help some with that. He finally slept a bit from 5-7am and woke up happy and rested-appearing. He actively played all morning and took a nice long morning nap and even squeezed in a late afternoon slumber. He is catching up on sleep and looking better.
Wednesday (today) brings the addition of Lipids (fat). So, now his TPN has: Dextrose, Amino Acids, and Lipids, plus an acid reducer (because of eating less). Tomorrow will be a multivitamin. A multivitamin is an important step but it also does not come without it's own risks as it has ingredients that he would possibly react to orally. But, this is through the IV....
This mechanism I still do not fully understand, the T cell response and the degree of the allergy. It is a gut allergy but T cells are all over the body. Do the Tcells of the gut only recognize the allergenic food? Then explain atopy patch testing....where a food substance is placed on the back under a metal disk where it sits for 48-72hrs to see if the skin responds (being a delayed hypersensitivity reaction). It is not 100% accurate testing but it gives a guide. We have not yet done ATP, and not sure if we will since the places we have been do not offer it. So, the question remains....will his body respond to his known triggers in the IV? The dextrose is from corn, but it is hydrolyzed down....and yet corn allergic patients have had reactions through IV's before, and yet some do not....it is like everything else -- the only way to know is to know. It's all about the trials....