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 23, 2011
Recently, we had a fundraiser to raise awareness, a month later and I am still overwhelmed at the response we received. Money raised, in Little Man's name, for The FPIES Foundation, to help future families in more ways than one. To enable The FPIES Foundation to provide assistance and programs, and educational materials (such as a flyer we distributed at a recent Food Allergy Fair, more on that later) to further raise awareness and support for FPIES families following in the same footsteps as we have on this journey. A treasure beyond measure, the gift that will keep giving.
Kindness, empathy, thoughts and prayers for strength and healing....all among the richest gifts we have received from family, friends, neighbors, acquaintances, even complete strangers. God has mysterious ways of showing us how beautiful His world remains- because of the very people who have shared our journey, who have provided us with this support.
God never promised there wouldn't be trials and troubles in this world, He only promised he'd help us through it. This diagnosis can be ugly, but God is giving us the graces to get through it- the strong instincts to know what to do next, the drive to do it, the graces to perservere through adversity, and the support from others. Assurances we are on the path He intends for us and Faith that there is something at the end of this journey.
Tuesday, November 22, 2011
This past spring, my sister held a benefit for our little man. It was extremely successful in that it raised a lot of awareness in our home town community, 3 local newspapers did articles, people wrote to us from reading those articles, and of course people attended the benefit to meet our little man and ask their questions and learn about what FPIES means to him, and our family. At that same time, in the spirit of raising awareness, I also booked "Tip Night" at a local Pizza Ranch to raise awareness in the community we live in now. Unfortunately, we had to reschedule that as Little Man's needs were too high at that time, so we postponed it for this fall. It became scheduled for Oct.24th. Of course little man's needs have not slowed down much, but I decided we needed to go ahead with it anyway. We were blessed to have friends that were able to help- help advertise it and help work at it; because little man was actually in the hospital the week prior to the fundraiser!
The FPIES Foundation helped in making an announcement flyer for it, that a neighborly friend helped hang up around town.
It was a great event. Pizza Ranch has a program built in for non-profit fundraiser events such as this. It is called "Tip Night". You bring the waiters, you earn the tips.
Monday, November 21, 2011
We've chosen to start that with zucchini. Well, I've chosen. I chose zucchini because we have never tried it before, he is not sensitized to it, and it's been over 18mo. since he's even had anything in the squash family. It is a good source of Vit.C which he needs more of in his diet. It is easy to digest and easy to bake in to foods (since his favorite food right now is his "cookie"). It is low in sugar and lower in fiber (skinned and seeded), it shouldn't cause any symptoms much less an FPIES reaction. But if it should, it's only zucchini and not available all year (although I do have a freezer stash). It WAS in season when we were going to orginally start these food trials so it was perfect (food trials were delayed a month due to a PICC line infection and treatment).
So, here we are at zucchini. Today is Day 6 and today went well; but we're holding our breath because we've been cycling through some concerning symptoms. My hope and prayer right now is that these symptoms are merely his body demonstrating that it still struggles to find Oral Tolerance and to caution us to continue to be careful in the foods we chose next and how we prepare those foods, and how we help his body accept those foods.
So, how has the trial been going? What symptoms are concerning?
11-16 Zucchini Trial at 11:15am= 1 small slice and ½ a “muffin” with zucchini in it. Fussy before nap, itchy ears, red cheeks, smelly gas, refusing bottle before nap. Woke up from nap pale but pinked up, and played well all afternoon/evening; very tired looking, drinking sips of his peach‘juice’. Slept ok through the night, some tossing and turning. BM diaper is "normal”- has been having them every other day, thicker.
11-17: Zucchini at 9:30am- boiled/purred- 1tsp. 12:30pm had bites of a cookie made with pureed zucchini. Got D10 for low blood sugar at 10:30am. Refusing bottle a lot today, looks more pale this morning but happy throughout early morning, had some “blah” and fussy times. Found low blood sugar results from early AM lab draw,after getting unhooked from TPN; took 4oz.at 10:30, then had lab draw right after finished bottle. 1:30pm- irrational tantrum, drooling, choking, screaming (not crying-screaming),noted mottling (but was playing with cold water). Settled down and had a short nap, woke up crabby; better after bottle but still “blah”, evening tantrum noted to have mottling and feet turned purple when being held (cleared when put down), rash on right cheek, looks so tired, smelly gas. Decreased oral intakes, and decreased wet diapers (didn’t wet through the diaper last night as typically does). No BM diaper today.
Concerned that boiled zucchini caused the “episode” but could even have been from the D10 he got for low blood sugar. Slept well overnight.
11-18: Zucchini at 5:30pm baked in cookies-ate 3, got approx. 1tsp zucchini. Looks pale, purple around lips, lips look paler; but otherwise in good mood this morning. Started asking for his bottle again, and increasing intake mid-morning, took a good nap- woke up crabby but calmed down easily, played nicely all day. Willingly ate his “cookies” at 5:30pm- enjoyed them. 6:30pm noted rash on cheek flared up again, and smelly gas otherwise good mood. BM diaper had mucus surrounding thicker stool (playdough consistency).
Slept well overnight, but had to be near daddy. Woke up twice but didn’t eat.
11-19: Nibble of zucchini cookies at dinner 6pm. Fasting for AM labs to check blood sugar after TPN cycling, tantrums while waiting for 10am (fasting) lab draw! Ate well after that and played well- dismissed from hospital and happy to be home, ate “cookies” for dinner. Rash on cheek flared up after, otherwise no other symptoms- good mood and played well. BM at 9pm- “poop soup” (took pic)- watery/soaked in surrounded by thick pieces. Slept well through night. Eating better at home.
11-20: 9am bites of cookie with baked zucchini (same batch from last night). Asking for bottles, eating better today. Increasingly whiney all morning but playing. Rash on cheek flared again, itchy ears.
11-21: 9am BM diaper, blow out/liquid. 10:30am 1tsp of skinned/seeded/boiled/pureed zucchini- doesn't like it. Fussy off and on today as yesterday, but slept well and increasingly better mood throughout the day, increased energy.
I’ve been in an FPIES funk the past few days. It isn’t the reason I’ve been unable to keep up with my blog, that started with just enjoying our baseline (shhh.don’t tell FPIES), which was kept busy with the work on The FPIES Foundation, but then led to anxiety about upcoming food trials and landed us square in getting an upper endoscopy last week and proceeding to the zucchini trial we are in now.
The upper endoscopy showed mild reddened area’s that are familiar to some past scopes. The plan was for a food trial to begin- zucchini; but the biopsy results back the day we started the food trial showed villi blunting, again. Do we proceed with the food trial? What is the villi blunting from? Is this his normal? Is it related to FPIES or something else? Could he have small bowel bacterial overgrowth, and is this why he did so well on the antibiotics when he had the line infection a few weeks ago? Is every reaction causing villi blunting? Was this from the probiotic? And why? Those ingredients were “safe” for so many months – why would it now cause this? Or was it from the Sorry board game ingestion? We certainly saw symptoms from that. Or, is it from something else in his diet? In his world? A cross contamination from the soap I use to wash his bottles? The exposed sheetrock downstairs (gypsum is made from corn)? The potential cross contamination in the Bob’s Red Mill products I use (they process corn meal on the same lines, anything is possible)? An intolerance to the arrowroot starch in his daily bottles, feeding his small bowel bacterial overgrowth? If this is happening this frequently- without glaring outward signs, then no wonder we’re struggling with passing a food, and no wonder he has persistent and severe anemia. If the reactions aren’t causing just inflammation but causing villi blunting- it would be more severe, and take longer to heal…..and no wonder we are always cycling. It certainly makes sense for why.
Still so much to process, still so much as we continue through a food trial- zucchini….
Saturday, November 12, 2011
I worried if these recent reactions were going to compromise the scope findings. The Sorry board game was Nov.5th, the scope was scheduled for the week of the 7th. We have already lost a month, from the line infection; and he isn’t going to be able to have the PICC line for forever so we need to keep moving forward. We need to utilize the line to draw labs and watch what is happening in his body as we try to get his body to accept a food. Is it something we can change? Is it something we can help his body with? Are the symptoms related to his FPIES or something else? So, we can’t delay any longer but he is still having some symptoms. Ironically, our GI couldn’t do the scope the week that we had planned and put it off a few days. We would do it on Monday the 14th instead; and then be admitted for the food trial on the 16th for 3days. We decided to go with this plan, as we have been waiting months to get to this point.
Sunday, November 6, 2011
Little man was on a 10day course of antibiotics after being discharged from the hospital for the line infection. That course was set to finish Oct.26th. I began to think about how this long course of antibiotics, plus the multiple antibiotics during the hospital stay, would be robbing his body of bacteria- good and bad gut flora. Ridding the body of the “bad” gut bugs is a good thing, now how to ensure the “good” gut flora flourishes so that there is homeostasis in his gut: where the beneficial gut flora reigns, the “bad” gut flora remains to do its job keeping the fungal’s at bay.
We had stopped the probiotics he has been on since March, in August after a switch in brands caused some questionable symptoms and coincided with the scurvy he developed. The beginning of his probiotics last March was very favorable for him, he gained weight, his appetite increased, his labs leveled out, his hemoglobin was stable, he was at a baseline we hadn’t seen him at in a long time. However, he quickly hit a plateau so I set off to find a better fit- first I gave him the probiotic in 2 doses, a morning and an evening and that seemed to help; then I thought if that was helping, I wonder how he would do with the probiotic in his formula so he was getting a continuous “feed” of it all day, and so the probiotics were in his gut in an environment (with the food directly) that would support their growth at optimal levels. I can’t change his diet to encourage that (with foods referred to as ‘prebiotics’) so this seemed to be a good answer; and he again responded well to it. I don’t remember exactly when he seemed to be having a plateau or something again, but I thought he needed new strains- maybe the strains I was giving him was creating more dysbiosis within the beneficial bacteria. I tried adding a strain (bifidi) and he had too many symptoms to continue, I tried adding a new line (ProBioGold)and he developed symptoms, fevers and even an ear infection (his first and only!). Back to the CD-Biotic (3strain probiotic from Kirkman labs). Then, following advice from the Functional Medicine doctor we saw, he was concerned over this combination of probiotics and felt Sam needed custom probiotics; he had a guy (the “bug guy”) that did this very thing; so we switched to Custom Probiotics. That brought us to August when he had symptoms and then developed scurvy.
Now, the antibiotic brought us to a great baseline; all to see it slipping away with reintroduction of the probiotic? Does this make sense? Is this die off or is it a reaction (maybe one he was having chronically all those months) to the filler ingredients in the probiotic or even a reaction to the strains? Initially I started with the CD-Biotic, which is the one he responded so well to in March and the one we felt he did well on for a long time- even putting it in his formula mix. He had symptoms and I worried the long course of antibiotic was too much and 3-strain probiotic was too much to start him off with; so I switched to a single strain I had gotten to try and add to his 3strain a few months ago, or try in place of it since something seemed off. Dr.Jyonouchi, the research MD we saw in NJ (in Feb) had said he would need to be on a low strain (single would be preferable) as his system was so severely dysbiotic. After trying a few days of CD-biotic, with these symptoms of uncertainty, I thought I’d give it a try this time around….
Which brings us to Halloween screams. I had given it to him that morning for the first time (I worked over that weekend and I didn’t want to do anything while I wasn’t home). I thought it was attributed to him being upset that he couldn’t have the candy he saw us pass out to the trick-or-treaters. It was a bit irrational and extreme; when he had it the next night over not letting him dump water on the floor- was starting to wonder if we were seeing a pattern? That something simple was setting him off because he was having some underlying pain/inflammation/whatever-happens- in- his- body- during- a- reaction. I skipped the next day and he was fine. So, I gave it one more time- somewhat reluctantly…and, like clockwork, ~8hrs after he consumed the probiotic, he is screaming and screaming and screaming. Irrational, inconsolable. Other things I notice is that he is sweating (from the fit) but cold, also he is gagging every few minutes- kinda like you would hear from a typical kids’ crying fit when they are sobbing so much they begin gagging on their snot…only he doesn’t have snot and he’s not crying as much as he is just pure screaming. And the gagging is more like he is throwing up in his mouth and then swallowing it. And even his brothers recognizes the screams and the pattern, and say “first it was the Halloween candy, then the next night over the water/ice, and now this? What is going on?” Also, in the night on these nights- he is crying in his sleep and even crying out “help”, it takes a lot of rubbing his rock hard belly and patting his back to get him consoled for sleeping.
I didn’t give it to him yesterday and he was great all day; until he sucked on the Sorry board game when I wasn’t looking (or expecting)…and 8hrs (at 4am) came the screaming – that was fun. And today he is a little clingy. Most cardboard products like that have corn and potentially soy in them- and it becomes more clear that the probiotic is the same pattern of symptoms. His pattern of symptoms. Now what?
This got a little long, and complex- but this is my thought process as we go through the day(s)….everything needs to be trialed, anything could cause reactions. I’m tired.
Thursday, November 3, 2011
Prayer Blankets are sewn with love and prayers for those who receive the blanket. This prayer blanket is a symbol of our faith sharing community “covering with prayer the individual who receives it”.
The Prayer Angels of St.Joseph parishes, commit to prayer as they fulfill their part in construction of the blanket. The process involves shopping for material, washing, coordinating fabric, cutting, sewing, ironing and tagging. After the blankets are complete, they are placed on the altar at a Healing Mass and blessed by the priest. Those who are to receive the blanket are held in prayer. These beautiful acts truly transform the blanket into a “PRAYER BLANKET” whose very threads become interwoven with pleas for healing on behalf of the recipient.
Each blanket bears a tag that reads ‘You are covered in Prayer.” This blanket has been prayed over and blessed at St. Joseph Healing Mass. Be Not Afraid, for the Lord said, “I am with you always, until the end of age”. (Matthew 28:20).
This gift of prayer originated at the MD Anderson Hospital in Houston, TX where the chaplain who gave the blankets to the sick found that they so uplifted the patients that she began to deliver them on a regular basis. Blankets were given to hospital patients, the sick at home, the Veteran’s Hospital and cancer support groups. Missionaries presented them to the orphaned, very elderly, and those who were sick in Guatemala and Volograd Russia. The gift was received as another wonderful way that people are doing God’s work.
The Prayer Blanket brings comfort to the suffering and peace to the fearful. When one sees and touches these blankets, they know they are not alone – that they are covered in prayer and there are those who do care about them.
God has used this beautiful ministry not only to touch the lives of countless people who have received the Prayer Blankets while they are going through extremely difficult times in their lives, but the lives of those involved in the ministry as well. We are blessed to have so many people who give abundantly of their time, talents, and treasures, making Prayer Blankets possible.
Wednesday, November 2, 2011
September 1 Little Man was 11.1kg, which is 24#. Today, 2 months later, with 8 weeks on TPN, he is 12.76kg, which is 28#! He has gained 4# in 8 weeks! This weight will help us see how he is doing on food trials as well; although he will have the "back up" of TPN during the food trials to keep him from losing - we may still get indicators of his inflammation as calories are not readily absorbed from the gut, and his body needs extra calories if his villi (small intestine walls) get damaged. His growth chart is full of these types of losses. His growth curve is a picture of a bouncing ball. He would gain, and then fail a food and either lose or not have any gains for weeks. Just in September, when he was reacting to the Vit.C supplement; in a week and before we started TPN he lost 1/2kg which is a full pound in just one week! (so technically he has gained 5# in 8 weeks on TPN- having to regain a lost pound!).
He needed this weight gain, for catch up growth. He is now in the 35th% for his weight. I didn't think to get a height check on him too, and should have because looking at his growth chart, I am reminded that his last height check put him in <3% on the chart. He is much shorter than his brothers were at this age (judging by their growth charts on the wall), but he is proportionate for him. He is finally out of 24mo. clothes, and even moving up a size in diapers. From failure to thrive, grow and gain weight, to catch up growth. My heart smiles.
Tuesday, November 1, 2011
The set back of the food trials is on my mind a lot, we were all set to go in 2 weeks ago; and that we didn’t- I feel like we’re in limbo, waiting to go to the hospital for the inevitable and yet looking forward to getting it done…and potentially getting some food for his tiny menu from it, or the very least- learning more about how his body is working and why we’re struggling so much with so many foods.
We got blood cultures last week which tell us if the antibiotic course has helped his body fight the PICC line infection, to test for any signs of the bacteria in his line remaining after the long course of IV antibiotics. We got the results today- negative! The line is CLEAR of bacteria, no lingering bacteria to cause an infection! This is such great news and now we can proceed to the plan of food trials, where we were a few weeks ago before all of this happened. I have thought (and wrote here about) the setback this infection has caused but there is a peace of heart knowing that everything happens for a reason. With that Faith, I have been able to get through this difficult time of the infection, sepsis, hospital stay; but I admit I still have had lingering difficulties with not knowing or understanding the plan, the next steps. I’m a planner- so FPIES often has me turned upside down. I’m learning the difference between planning for the future while trusting in my Faith to intervene in my plans as needed.
I will admit that I feel better today though, knowing the infection is clear and a plan (re-plan) is forming. He will get IV iron this week as his hemoglobin is dipping low again (low 7’s now, normal is 11); and then next week he’ll have a baseline endoscopy before food trials the following week.
All in His plans…trust….