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, November 10, 2010
We had a system, we coped through it; but we were glad to all be home under the same roof again. Friday night was uneventful, little man even slept fairly well back in his own bed. We continued to imagine how nice it will be to have soy as a "non-trigger". I made a fresh batch of formula, 1/2 Hemp milk and 1/2 soy milk (with the fortifiers of safflower oil, hemp protein powder and arrowroot starch) for Saturday morning and the morning went well. I also restarted his iron supplement he has been taking since mid-September. The pediatrician at the hospital explained he would still need his daily iron, even though he had just gotten "loaded up" with red blood cells because otherwise his body would not make more red blood cells because it would think it could take a much deserved vacation! So, I wanted to get that restarted right away. He played all Saturday morning and went down for a nap at his normal time. He awoke from his nap screaming and clearly upset. I picked him up and immediately could tell he had a fever. I took his temperature and sure enough, a fever. Clearly he was uncomfortable so I went to get his ibuprofen (this is compounded for him to be corn free). We had taken it with us to the hospital and it wasn't unpacked yet, however I had a new bottle of a prescription I had filled a few weeks ago (to have on hand instead of waiting until we ran out because compounding can take a few days). So, I went to open the capsule (it comes in a powder, sealed in a capsule that we break open and mix with water, using a syringe to give it to him) and the powder came out orange. Now, his iron that we got from Walgreens at the same time (second week of Oct.or so) also has been orange but I assumed that was because it was elemental iron and this suppliers was orange....but now, why would this ibuprofen be orange if it is just ibuprofen and calcium carbonate? The other one wasn't orange. He was screaming, so I gave it to him and then immediately thought- "why did you do that, you don't know what the orange is"! I immediately called Walgreens and was relieved when the kind pharmacist that worked so well with us in the beginning with his compounding answered. She looked up the information on this particular prescription and sure enough, they had added aluminum/red dye #40 to it!! This is used as a "lake" and it helps keep the medication compounded. They had wanted to put it in his original prescription compounds -- I remember because it was one of the many times they called to double check to see if they could add this ingredient or that. I have been wanting to steer clear of food dyes. Little Man's daddy was allergic to food dye as a young kid and his older brother has some issues with them as well, and I had observed in the past that he may also have these same issues. I don't know if they would be FPIES related or not- I think just more of an intolerance/typical allergy. But the pharmacist that did this newer refill did not know that, did not think to check because I had not spoken directly to him/her to discuss his food allergies and we do not have food dye's listed on his chart for allergies. So, we have been giving him red food dye for 2-3 weeks in his iron. Could this be the reason his hemoglobin feel from 7 to 5 without us noticing? Could this be the reason he was having problems sleeping (hyperactivity is a symptom of a food dye intolerance) despite being so over tired?
It might be, but it could also be a build reaction to soy. Saturday we stopped any medications with food dye but continued soy. Saturday night was disturbed sleep, Sunday brought more fevers, more crying, more needing to be held all day, and a loose-soak-into-and-thru-blow-out-mucous diaper. There is fiber in his soy milk, so maybe it is because of this increase in fiber in his diet. Maybe he is teething, and sometimes stool can be a little more runny from that. Maybe it was the red food dye reaction. I was starting to get nervous about the soy....
Sunday night brought on less sleep (for everyone). Monday morning, he was still running fevers so I put a call into the pediatrician to let them know how he had been doing and get advisement on if he should be seen and evaluated. We weren't as worried about the fever itself but what it was doing to his body and how far it would go before he "snapped" out of it. With his history of such prolonged and rough "falls" after a reaction, we began to worry. I gave him his "safe" iron dose and within 30min he was screaming, screaming, screaming. Inconsolable crying, agitation, mottling, drooling, hunched over-legs drawn up stomach pain, screaming. I left a message for the GI doctor as he was now crossing over into concerning symptoms that she wanted to know about if he started to have. I waited for return phone calls while trying to analyze what was going on and what next steps I need to do. My mind automatically goes to next steps...what can I do? What can I do to stop his pain, or at least ease it some? What can I do to make sure this doesn't happen again? What plan can I make for the other kids if I need to go to the ER if he should start vomiting? Who can help me decipher through these symptoms? So, yes- my anxiety was building. I do my best to not let it show to Little man, he picks up on it so easily. So, I hold him and hug him and kiss him and dance in the kitchen, and watch Baby Einstein, and try to get him to eat, and see if he wants to play...nothing is distracting him from his pain and the more I try, the more upset he is getting -- almost as if he was mad at me (maybe he is, maybe he is mad that I gave him the things that are making him now hurt). I called his daddy at work to let him know the assessment of the morning. He knew by my tone that things were not good, that things were all-too-familiar from previous reactions. He came home immediately, his assessment- the same as mine....clearly reacting to something. So, either red dye from Saturday (when his fevers and agitation started) or a build up to soy. The good news is, Little man calmed down some for daddy....as long as he didn't try and put him down. So, he cared for him while I dumped out all the soy formula and made a new batch of "safe" hemp milk formula. Little man had already been starting to refuse to eat - is it the soy? He will typically refuse something that he correlates with giving him a tummy ache. Now he is mistrusting his hemp milk formula (something I've been very afraid of as I look for fortifiers for it). He has a large blow out diaper and we decide he is going to need to be seen, even if our pediatrician hasn't called us back yet. So, we see someone completely new. All we wanted to know is if his fevers were related to a viral illness or not so we could continue to assess the situation and what we needed to do next. She checked his ears, nose and throat and everything was clear. There were no signs of a viral illness- although that doesn't mean there isn't one. She wanted to help more, so she orders a hemmocult screen for his next stool per his daddy's request/insistence--which he kindly gave us a sample for when he got home from the appointment.
Tuesday morning and the GI doctor called with results from the stool sample....positive. With the symptoms since Saturday and a positive stool sample- she wanted him readmitted right away. I agreed that I was worried about him but since he had not stooled yet that day, and seemed to be "holding" - we were trying to be optimistic that he would remain holding.....because Tuesday was his biggest brother's birthday (again, we try to maintain a quality of life not only for little man but for the whole family, through his illness). GI doctor said to make sure to have little brother hug big brother-birthday boy because he was saving him from a hospital admission that day. We were to keep her posted, if he continued to do ok- we could continue working on getting him back to a baseline at home before proceeding to next steps of a vitamin trial and follow up with her at our appt later in the week. Our optimism didn't keep little man from going downhill that afternoon....
We turned in another stool sample that the GI doctor wanted in follow up to the positive blood one; and we did some blood work. He had another rough night and clearly wasn't getting better,only taking in half the amount he is supposed to for formula for 3days now, and making less wet diapers and his lips were dry....our concern for him was growing. So, this morning we called the GI doctor again and asked her to call us back right away. She got the message and called us back, we reviewed the symptoms and all agreed he would need to be readmitted for monitoring to try and re-establish his baseline before proceeding with a vitamin trial and a re-trial of soy.
I am home now, tag team in effect again. I needed to come home to make formula so we agreed that daddy would stay at the hospital with little man tonight....although he did ask today if this formula is something he can learn to make. He can....but it's kinda like making candy - it is all in the feel of the stir....it is a delicate process and I have made a few batches that went down the drain. So, we'll save that for another day and for now- I am home to make the formula and be with the other boys. Little man is at the hospital, with Daddy, and being observed....maybe today was the "peak" and he will do better overnight and tomorrow but if not- he is where he needs to be and I can rest my mind, even if it is just for tonight.