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."
Monday, May 30, 2011
A quick recap: initial changes were increased appetite and “die off” or upregulation of his immune system changes. Gut flora is a large piece of our immune system. Much research has been done in recent years as to how much the gut impacts our immunity. Probiotics help the resident gut flora to thrive, strengthening their numbers and power and thus, in turn diminishing the “bad” gut flora strength and numbers. Keeping our gut flora in homeostasis influences all systems in the body for proper health. It becomes more obvious just how out of homeostasis Little Man’s flora was as we work our way through the probiotics.
Once the gut flora was adjusted to the daily probiotic, we began to see a plateau effect, and experimented with higher does, more doses per day, and even added probiotic strains. Added strains were too much on his system at this time (too much upregulation on an over-reactive immune system?), Higher dosage was too much on his system, and more doses throughout the day were helping and although he loves the taste of his probiotic, he was starting to tire of the medicine cup routine. He couldn’t handle increased dosage but he could handle increased dosage times. This is when I got the idea to add it to his formula mix so that there was little doses multiple times per day. He loves the taste of it, it increases his appetite- both reasons to drink more formula and maintain or gain more weight.
Beyond increased appetite and resultant weight gain, we have noticed better sleep, better mood and hopefully what looks to be a slowing down at least of his vicious cycle. The vicious cycle we’ve been trapped in for so many months, with probiotics, he re-coops after a reaction easier, he bounces back better, he experiences less build symptoms. But, miss a few probiotic doses and we notice what even looks like reaction build symptoms.
Is this a clue into his build symptoms? Another piece to his puzzle? We have found out where his cytokine “break” is- in his candida responses and in his Th17 responses….both tied to the GALT and gut flora. So, when he begins to take in a food and his body is not properly digesting it, the food byproducts begin to impact his gut flora, which in turn cause his body to attack itself and build up more “bad” gut flora (yeasts), which in turn makes his gut “leaky” which results in the undigested proteins crossing over into the lymph system and signaling the cascade of cytokine responses for the body to respond to this perceived toxin. His gut flora is causing his atypical FPIES responses? His gut flora is directing his Th17 responses which drive his Th1 responses to attack. Are we closer to the bottom of this puzzle so we can start rebuilding it again?
Little Man’s formula is approximately 21cal/oz. His needs are ~900-1100calories/day based on DRI- Dietary Reference Intakes. It has become his normal to increase his intakes following a reaction. Is it due to the inflammation causing malabsorption? Is it due to the weight loss following a reaction? Following the last few reactions (new probiotic, banana, and IV sucrose), little man lost almost 2#- all this work to gain those pounds gone in a matter of days. He needed to regain that weight, 3500calories to make a pound. His body puts a drive in him that is very strong. For the past few weeks, every 45-90min, he has been taking a 4-6oz.bottle. It seems we have barely turned around from sitting down to finish the one bottle when he is on to the next one. This goes on day, and night with night bottles slowing down to ~2-3hrs.instead. If he goes 2-3hrs.during the day (busy, distractions, travel, etc), he will wake more frequently at night- 6times in 9-10hr.night! Thank goodness, that since the probiotics, he has been able to sleep better- less colicky tummy pain and he wakes to eat a bottle and goes right back to sleep…and now he sleeps with us. I’ve wanted this many times over the past 2years- with such frequent night waking, I wanted so many times to just have him want to sleep in our bed- just so we could not only sleep but simply lie down; but he had to be walked, rocked, soothed. Now, he just needs his bottle- but don’t go too far away or that will wake him up (hence the sleeping with us). So, sometime around the middle of the night, he joins us in bed- waking us every few hours just to say ‘bottle’? In a 24hr.period he has been averaging 1400-1600calories!! An added 300-500 calories a day! And in 10days, he gained a little over a pound. The extra calories he ate were used by his body to regain his lost weight. This is a good sign. A very good sign. And we breathe a sigh of relief....and celebrate weight gain!
Saturday, May 28, 2011
One afternoon this past week, I had gotten blueberries at the store because our 3yr.old has always loved them. Little Man "asked" for them. I hesitated, skins...seeds....really, I know better. In the hospital where I work as a Dietetic Technician, one of my roles is to provide dietary guidance to those who have just had intestinal surgeries- the main "rule" with that diet? No nuts, no seeds, no skins, until the gut has healed and then cautiously and one at a time introductions from there until tolerance is determined. Little man's main nutrition is seeds! Hemp seeds- ground, strained and made into milk. Millet is also a seed- puffed into puffs or ground into flour.
Awhile back, I had given thought to an order for food introductions. Following the low-allergen scale doesn't really seem to apply to FPIES as those foods are all on the "common trigger" list (rice, sweet potatoes, squash, chicken....). What about a rotation type diet? Would that work for my little delayed reactor or would it just make things more muddy and confusing? Having training in nutrition, I also am aware of every whole food playing a role in our body, some foods (called Functional foods) even beyond basic nutrition. Each food has a class of digestive components, could this be a way to introduce foods? And where do I find a guide for that?
A fellow FPIES mom, looking for healing for her daughter- who was not finding true healing on the corn-based elemental formula- was re-introduced to something called GAPS diet. GAPS stands for Gut And Psychology Syndrome. There are also diets that follow GAPS, and others such as Weston Price, SCD (specific carbohydrate diet) and Paleo among others. Which ones could work? Would any work? Are they all hype? Or are they clues to what could work? Would any of these work for FPIES? As this fellow FPIES mom began studying the concepts of the GAPS, it became clear that the GAPS MD, a Dr.Natasha McBride, had outlined a diet with those considerations in mind- which foods would promote healing and nutrition and then encourage gut flora to flourish and provide homeostasis in the gut, so that all systems tied to it would flow better from it. A guide for food introductions not based on low allergen scale but beyond that, into the effects these foods have on the digestive system through recovery and beyond. But how does this translate to FPIES, a severe food allergy?
I am a big advocate for individualized approaches to health. We all have our own set of genes, our own environmental backgrounds and exposures, our own "footprint"- or as a speaker I once attended called it, a "foodprint". I began to wonder if something like GAPS could be tailored to FPIES? Could it at least be a guide?
I have not fully studied the GAPS diet as this fellow mom has, but other moms have and are also finding some successes, which I find encouraging. I hope these moms can be encouraging to others looking to find the the right fit for their little ones. It is a lot of work, it requires thinking outside the box, it requires taking risks you hadn't planned on taking, it requires time and energy, and resources.
I'm just trying to figure out where Little Man fits - hemp milk formula provides nutrition and has provided healing for his inflamed gut. The essential fatty acids have been critical to support his healing from inflammation but there is still healing the leaky gut. We are working through that with probiotics and have noticed significant changes already. But now what? What foods come next to continue to encourage this healing path we are on?
Blueberry's are not. And Little man's system confirmed that for us. That first day, while his brother T. had a snack, he had 2 blueberries- that he devoured before I could turn around! My apprehension for how he was going to digest those skins was pushed aside by the fact that he ATE those skins! A little boy who has not had much for flavors and textures, who still struggles with gagging on his millet flour recipes, just ate a whole blueberry!
He had no adverse effects all evening....maybe he was hyper- we were enjoying an evening out on a bike ride and walk to the park- he seemed to have more energy but who doesn't when summer finally comes after a long winter? During the night, he had difficulty sleeping- whimpering, legs curled, stomach pains. Nothing extreme but clearly there....and my apprehension came back. The morning diaper filled with blood confirmed his tummy pains, and that it was just too much to expect his sensitive digestive system to digest these skins yet. Not wanting to take away a treat he was ENJOYING, I boiled the blueberries and blended them to a syrup. I made them into Dippin Dots, maybe he would be fooled- they are still round! He wasn't completely fooled but he did enjoy them! That night, no pain filled tummy aches but he was up every 45-60minutes all night long...but he did take a bottle every time....so maybe he was just hungry? The next day, he was particularly fussy all day- was this from the blueberries or 'typical' toddler behaviors? Yesterday, after a nasty diaper, he was back to baseline....confirming some issues with blueberries. FPIES symptoms building? Or digestive system not ready? Either way, another fruit is shelved for now.
Friday, May 27, 2011
Wednesday, May 25, 2011
I am not the only one who has had to learn on their own. I wanted to share some advice from some other educated corn allergic people. My first go-to was the Corn Free website. This women spent painstakingly oodles of hours putting together extensive lists of ingredients, that have almost memorized in my efforts to keep my son safe.
I have since joined a community on babycenter where moms come together to share their experiences and a very knowledgeable mom posted this: Considerations when dealing with corn allergy:
"Here is a short list of items that I have in my son's allergy binder. It is aimed at anyone who has to care for him should something happen to me, and focuses on things that I thought people would normally not think of. Feel free to add your own thoughts.
- NO dextrose IVs
- NO latex balloons, gloves, etc. (powdered with corn starch)
- NO vitamins
- NO rubbing alcohol
- Kosher for Passover items are generally considered safe in the corn-free community, but some are not. Generally, those designated Kosher for Passover by the Orthodox Union are safe. These will have a “U” inside an “O” and a “P” to the right. Kosher for Passover items are generally available in the early spring, though some are available year-round.
- His medicine must be compounded corn-free. You must do the research on the active and inactive ingredients because most pharmacists do not understand what all is made from corn.
- Grocery store produce and sometimes meat are washed with a corn-derived citric acid wash. To counter the effects of the produce wash, the produce must be washed and scrubbed with baking soda. Before buying meat, you must check with the store’s customer service to make sure they do not use any corn derivatives in their wash (mostly an issue with poultry).
- Some produce is also waxed. He CANNOT eat the outside of these commonly waxed items unless they are farm-fresh and verified to be wax-free. It is required by law that retailers display signs identifying which items have been waxed. Our grocery store’s list is: apple, cucumber, grapefruit, lemon, lime, melon, nectarine, orange, parsnip, peach, pepper, pineapple, plum, rutabaga, hard squash, sweet potato, tomato, yucca root.
- Vitamins are added to cow’s milk most often using corn oil or alcohol as a carrier. He CANNOT drink milk unless it has been confirmed with the manufacturer that no corn products were used in the vitamin addition.
- Corn can also hide in cheeses. Potential sources are: annatto (this yellow coloring often is extracted using corn oil or alcohol), enzymes or cultures (often grown on corn), and salt (iodized). There are very few cheeses safe for him and most are foreign.
- When contacting companies to verify corn-free status, you must specify that it does not matter if the corn protein is present or not, if it ever came from corn he can’t have it.
- In recipes, substitute potato starch for corn starch."
And, I have recently found a community on facebook that is run by Corn Freedom. Her son has a severe corn allergy, and she too has had to learn everything to keep him safe, and is thankfully sharing it. I wanted to share some advice that she recently posted:
I AM SURE YOU HAVE NO IDEA.by Corn Freedom.
When speaking with a "professional" whether in a store or on the phone always remember they are SURE of themselves. They are SURE there is no corn because to the best of their knowledge why would peppers be coated with corn? Why would peaches be coated with corn? Tomatoes? Why is it in their HUMMUS made with LEMON JUICE that's not labeled as concentrate and it's from the green bottle with the yellow top. They simply don't know. So YOU be SURE and don't buy it or don't eat it until you press for the information you are looking for.
I sometimes believe that there is no corn in a product because the person I am speaking with is so confident in their response. They are not thinking of our derivatives list, they are thinking about logic. There is NO logic on where corn is located in your products. It is squeezed into every vitamin, additive, flavoring, coloring, sweetener, lotion... no one who didn't need to know will actually know about these things.
Each time you educate yourself a little more you will realize that it's not them wanting to hurt you or they are less intelligent, it's just they simply do not know. So keep plugging along and if your questions are not answered by the first person, push for the next. Your health and the health of your family comes before being embarrassed by asking questions.
There are a few other useful websites for references, there is a lot you just need to learn on your own (unfortunately). I hope this post can help guide some of that learning process for those just beginning. I learn more everyday, through my son and for my son. Corn allergy awareness is on the rise, but we (corn allergic parents and individuals) need to continue to raise the awareness of the realities of a corn allergy.
Tuesday, May 24, 2011
Little man's daddy and I are from small town community's. There is just something about a small town community that rivals no other community you will form. From the beginning stages of this illness with our son, we have received unending support from "back home"- by way of prayers, special sentiments and supportive words sent our way. We wanted to help all those, that have supported us all these months, to understand what this allergy that our son has is about. We also wanted to raise awareness in our communities- for those not familiar with us or FPIES. We accomplished those goals and then some. As noted in a previous post, we were published in a local paper: The Watch. That paper has far reaching clients and we received support, and donations from people we did not even know but whom had read this article! Not only that but 2 other local papers printed articles in conjunction with this article. One paper (the RLF Gazette) printing that same article and the other (Oklee Herald) printing this article I wrote for my File Cabinet blog: What is FPIES? A-mazing!! I was so surprised when my mom, who had saved the articles for us, showed them to me! As we were putting together last minute details and setting up for the benefit, I was reflecting on the success we already had....our goals already so accomplished. We had raised awareness.
Monday, May 23, 2011
Years ago, little man's daddy was in the Navy, long before little man or his brother T. were a twinkle in our eyes, but we did have the big boys - who were the ages of the little boys' now when he went on deployment. A 6mo.deployment that we turned into a year long separation because we moved home before deployment to be near family during the separation, as he was leaving the Navy after that deployment. Our two older boys were born in the Navy, it was the only life they knew; and we had come to realize it was not the life we wanted them to know. We rarely saw our extended families, we missed special occasions, weddings, funerals and holidays. We moved every few years and we lived on a poverty-line budget. We were proud to be a Navy family but we felt God was telling us this life would not be the family life we wanted. The separations are hard. There are little words to express how difficult they are. And they are frequent. I hold much respect for the families that continue to do this everyday. The family we created in the Navy is unlike any other. Although we were far from our extended family, we had family to celebrate holidays and birthday's with, to share the joys and the tears, to even share family dinner's with! I am proud of the time we served in the military (any military wife knows what I mean when I say "we" served).
Those separations taught me something, with the responsibilities of a single mom and the struggles of a stay-at-home mom, and the worry of a military wife.....I learned to pace myself. Those lessons are paying off now.
Little man's daddy is no longer in the Navy he so proudly served for 10years but he continues to be in public service as a fireman, gone for a mere 24hours at a time, unless he is picking up a shift like tonight in which case he will be gone for 3days. The best gift I have is the lesson I learned back in those deployment days....to pace myself. The older boys have become all too familiar with my "I'm only one person with two arms and two legs" phrase....which of course can't be complete without the octopus joke and references- just why can't mom's be an octopus? Probably because that would only make it worse- we would try and do it all....and we'd get all tangled up doing it! This is the visual reminder to the boys that I am only one person and can only do so much. I pace myself.
With FPIES, I pace myself even more. I make adjustments to our family, to our lifestyle, to my expectations....all to pace myself. I pace myself in the morning in case it is an afternoon of holding a screaming/crying baby. I pace myself throughout the day in case it is a night of frequent wakings, or holding a crying/screaming baby.
How does that poem go? Cobwebs be quiet, dishes go to sleep....I'm rocking my baby and babies don't keep. It's been a blessing in disguise as I am someone who likes to do it all before I can relax....I'm learning to appreciate the relaxing a bit more. Little Man has taught us so much.....
And, as I write this.....I wanted to write a post on how well his Benefit/Fundraiser did, and share some pictures but I am not finished uploading those pictures because Little Man has had a roller coaster day- re-cooping from the trip and long and exciting weekend. He seems to be coping well and adjusting back into his routine better than I anticipated so I am glad to see that.....and I'm pacing myself....especially since as I am trying to write this- he has awoken 3 times.....last night he was up at least 6 times (with daddy)- so I'd better head to bed and hope it doesn't happen again tonight!
Thursday, May 19, 2011
Even his recent reactions (from accidental ingestion's, banana, exposures) have been rough but not as severe as past reactions. And despite the recent illness from IV sucrose, his body seems to be bouncing back much better than it previously would have. Why is this? Is he maturing? Becoming less reactive? Or have we hit on something that "fits" his needs?
It has taken 2months of playing around with probiotics but we seem to have finally hit on a good strain and dosage for him. And although it is very delicate dosing, on the days when we get it right- he is such a different little boy. I have found that he needs 2 capsules/day, of Kirkmans CD Biotic (broken open and dissolved in hemp milk). He can not have 2 capsules all at once, it's too much. He does ok when I break up his dosages morning and evening but he has a plateau effect from that. After his stool study came back and showed that he has no lactobaccilli growth detected, it becomes clear why he plateau's so easily and I have the idea to try and mix it in his formula, so he is getting low-dose, all day long. This works wonderfully but it has taken a few weeks to work through kinks (and I don't think they are all worked through yet!). I discovered that I can't put it in too many bottles at once, it goes about 8-10hrs, and then it starts to ferment and he doesn't so much enjoy that fermented hemp milk taste. Have you ever tasted/heard of Kefir? It's kinda like that. Now, that is a good sign- it means those probiotic bugs are active! It also means there is adequate sugars/carbohydrates for them to survive off of, enough to grow. Now, do they make it past his stomach acid? I hope so. Hemp has a decent amount of fiber; and fiber is what makes a good pre-biotic. Either way, we're working with what we've got and it's working ok. I long to get coconut in his diet- to make coconut milk and coconut yogurt and so many other things. We're working on it, very slowly.
Good appetite, weight gain, less adverse effects from reactions....all very good things but the best thing so far that we have noticed a change is following antibiotics. Little man has dysbiosis- meaning his gut flora is off, there are more "bad" gut bugs than "good" and although I still learn more everyday to all the effects this has on health, immune system, the brain even; we see the effects it has had on Little man....with very little oral tolerance, with disturbed sleep and mood, with failing most foods we trial, and with pain. Pain that I don't completely understand but know is there....a mother knows when their child is in pain. Pain that has been absent from our everyday now since antibiotics, followed by increased probiotics. Is this the switch he needed?
I want so badly to test it out- to try a dozen new foods! And yet, I also want to just stay here for awhile, not risk causing him that pain again. And what if I introduce a food that flips that switch back into dysbiosis? But what if not introducing a food causes him to slip back into dysbiosis again? What if there is a "good" food to do, what if I pick the wrong food?
We must go forward. He needs a better menu, he needs B vitamins, and better Vit.C, and micro nutrients, and variety....and something.to.eat!! Yesterday, the 4 boys and I drove 40miles one way to get 2# of ground buffalo, and a pound of buffalo liver. The Buffalo gal even threw in some Elk from a farm down the road, in hopes that Elk may be even better for him than buffalo. Buffalo aren't typically fed corn. They graze as they did hundreds of years ago; but some farmers do "finish" their buffalo on corn. "Finishing" happens with a lot of grass-fed animals, so if you're watching for soy or corn feed- always check to be sure they are not "finished" on corn/soy. Adding the corn/soy feed in at the end likely gives them less "gamey/grassy" taste to the meat. Little man's corn trigger is quite sensitive so we do not want to take the chance. The buffalo gal was worried that her buffalo, being free range may come in contact with some corn-like grass over their lifetime; she felt compelled to inform me this. I am taking the chance that it will not be an issue- it's all about the trials anyway? But, she wanted us to try Elk first as they are not free-range and are sure their diet does not consist of any corn or corn-like products. I also had her check with the butcher/processor, to be sure there is no spray or preservative during processing that would come from corn. The things I never thought of before having a child with a corn allergy.....
We will give him another week or so, to be sure he is healed past the recent illness. The IV sucrose was not in his gut- so we feel he shouldn't take as long to heal from that, despite how sick it made him that week. We will wait for good weight gain to show itself, and to continue this baseline we see. Then, Elk, Buffalo, continuing coconut, and some vegetables?
His homemade formula has ~20-22cal/oz (by my calculations it is 21cal so I average it between 20-22cal). Over the past week, he has taken in an average of 1450calories/day- some days in the 1200's but a few days even taking over 1500calories/day! At his current weight, he needs around 1100 calories/day to maintain and grow, adding in a few hundred calories for extra growth....which is just what he is doing! Every time we turn around, he is getting fussy and asking "bottle?" again- every 45-90minutes he is taking a 4-6oz. bottle! We have barely been able to run errands or do anything in this short amount of time between bottles. But I am happy to stay home, keep his formula cold until it needs to be warmed up and then snuggle in for a bottle every.single.time he asks- especially if this gets us back the almost 2# of weight he lost recently. Weight that we worked so hard for, taking 2-3weeks of concentrating my time and efforts to make sure he is encouraged to eat every 2hrs, to sleep next to him so I could get him a bottle right away- so he could take in the 300-400 extra calories he takes in at night. It paid off and he gained weight, and was doing well....until we started to spiral.....
A weight check last week revealed no weight gain, and a few grams of a loss. Too early to tell, we weighed in again this week.....we regained those few grams but it doesn't seem to match his extra caloric intakes. We will weigh in again next week before we start to worry but he does seem to be absorbing those calories and he does look like he's gaining and getting good nutrition. His cheeks seem to be filling out and getting some more color from the past weeks post-reaction pale. For now, we'll revel in the positives and continue to take it one day at a time.
Tuesday, May 17, 2011
Our little man has what has been coined as "Atypical FPIES", this is due to his chronic ingestion of his main trigger. There is little research into chronic FPIES but a few articles are beginning to unravel it. His symptoms differ some from "classic" FPIES. Classic FPIES is where the research has been, the research has not caught up to where Little Man and so many other FPIES and Protein Intolerant children are. We have hope that by continuing to share our story, it will help to raise awareness to the dimensions within FPIES that so many of these kids experience. And, so that families like ours will not feel they are alone. It was others' sharing their story, their experiences, their journey that helped us see we are not alone....and that although our son has a rare allergy, he can be helped, he can heal. And most of all, he can grow and thrive- despite all his struggles.
Saturday, May 14, 2011
As we near Little Man's 2nd birthday, I am reminded of this more and more daily. He is leaving his baby years, full toddler now, and before we blink will be a preschooler. As another FPIES mom recently reminded me, "the days are long but the years are short" (Thanks Heather).
The days ARE long, some days so much longer than others but one day bleeds into the next and before we know it, the year has passed. We are approaching a year since Little Man's diagnosis and yes, we are still trapped in FPIES but I guess that shouldn't be a surprise- no one said he'd outgrow it by 2yrs. Studies do show that around age 3 the body matures and becomes less reactive. We can hope. The years ARE short. And in a few years, hopefully we can look back on this as a time of growing.
It seems I am getting a lot of reminders lately about the coping realities of a chronic illness....often by other people giving some piece of welcomed empathic advice; but now more and more by Little Man himself. How he bounces back as soon as he finally feels better post illness/reaction- how he chatters and chatters all day- as if making up for lost time when he is so silent when not feeling well. "Thank you", "sorry", "excuse me", "what?..Ooh", and lets not forget "No!" are words he added just in the last few days. Once he finds a reason to say them, he will repeat and repeat. His oldest brother, W. plays the counting game...W. will say "1", Little man will follow with "2", W. "3", Little Man, "4"- they go to 10 like that.
Just when we think he's been too sick to learn something new, he "wakes up" after a relapse reaction and "shines"- reminding us all that he is "just a kid".....
This week has been Food Allergy Awareness week. FAAN (Food Alllergy & Anaphylaxis Network, a major food allergy foundation in the US) put out some educational and informational pieces. This one: "Ten things children with food allergies want you to know" is a great reminder that our kids just want to be kids....despite their allergy and chronic illness.
Ten Things Children with Food Allergies Want You to Know
©2011 Gina Clowes
1. I long to be included.
I would like to look, act and eat like everyone else. I’d like to buy my lunch and sit wherever I want. I know I can’t, but I’m happy when someone cares enough to provide a safe potato chip, cookie, or Popsicle® for me. It’s nice when I can have something similar to what the other kids are eating and I love it when I can eat the same thing as everyone else. Whenever it’s possible, please think to include me!
2. I’m scared I could die from my food allergies.
I’ve heard my parents and teachers mention “life-threatening” food allergies and I remember having some reactions where I felt very sick and really scared. I saw how frightened my parents were too. Sometimes, I could use a little reassurance that I will be okay.
3. I feel like I’m the only one sometimes.
If you have a support group or know another way for me to meet other children who have food allergies, I would really like that. It would be nice to know that I’m not the only kid who has food allergies. Having another friend with food allergies in my classroom or to eat with me at lunch would help me too.
4. I get confused when grown-ups offer me food.
I know I’m supposed to be polite and listen to grown-ups, but my parents have told me I should only take food from them. When you offer food to me (especially candy), I’d like to take it but I’m unsure and don’t know what I should do.
5. If grown-ups kiss me, right after they’ve eaten something I’m allergic to, I’ll get itchy spots.
If your dog licks me, I’ll get itchy spots too. I don’t feel quite brave enough or know how to tell you this, but I’m hoping you will remember; if you’ve just eaten something that I’m allergic to and then kiss me, I may get hives. So please don’t kiss me right after you’ve eaten that particular food
6. I’m embarrassed when people fuss over what I’m eating.
I know I have to eat my own safe food, but it’s easier for me when I’m not singled out. Sometimes, I feel very embarrassed when grown-ups ask me a lot of questions. More than anything, I just want to fit in.
7. I hear all adult conversations about my food allergies.
My ears perk up when I hear grown-ups mention my name or my food allergies. Please don’t pity me or act terrified because that will cause me to feel frightened. Food allergies are just one part of me. Instead, let me overhear you list all the wonderful things about me!
8. Sometimes I’m sad about having food allergies.
It’s hard to be the only kid in the class not having a birthday cupcake and having to eat something different from my box of “safe treats.” What makes it worse is knowing this will happen a lot throughout the year because there are 20 or more other birthdays in my class. I know it’s not the end of the world, but from my perspective, it’s pretty tough at times.
9. I’m watching you! You may think that I’m too little to notice, but I know when you forget my epinephrine auto-injector and return home to get it.
I watch you every time, when you’re reading the list of ingredients on my bag of candy. You are my role model and I’m learning how to manage my food allergies from you!
10. I will do about as well as you do.
My parents and other grown-ups “can-do” attitude will help me cope with the challenges of living with allergies and ensure that food allergies don’t stop me from being everything I was meant to be!
Adapted from the eBook Ten Things Children with Food Allergies Want You to Know.
©2011 Gina Clowes http://www.allergymoms.com/
Friday, May 13, 2011
Tuesday, May 10, 2011
Little man has had IV iron Dextran in the past. Dextran is a sugar made of many glucose molecules. Sugars for IV (detrose, dextran, sucrose) are most commonly derived from corn. We have always seen some symptoms with these IV solutions, but never very significant. Nothing significant enough to over-ride his need for receiving the solutions. It is always a lesser of two evils approach. IV dextrose brought him out of acidosis following tapioca fail; IV nutrition healed his villus atrophy, IV iron dextran corrected his anemia. IV iron dextran takes 6hours to infuse. There is a shorter version: IV iron sucrose.
Sucrose is a sugar made of fructose and glucose molecules. So, it is a more complex molecule, that the body will still have to break down. But wait, he has a gut allergy- right? Yes, FPIES is a food allergy of the gut. The gut takes the "hit"- as if there were hives or eczema happening on the surface of the intestines, or anaphlyaxis of the stomach. But the mechanisms are thought to be T-cell mediated. T-cells travel through the lymph system. T cells are not limited to just the gut- that is merely where they are concentrated and trained to recognize for this type of allergy. But Tcells also respond to skin- look up Atopy Patch Testing. Also, read here: NonImmunoglobin E-mediated Immune Reactions to Foods by Dr.Spergel where he illustrates how learning about Tcells from Atopic Dermatitis patients has furthered understanding of this immune mechanism of food allergy.
So, dextrose is from corn, dextran is from corn, sucrose is also from corn (isn't everything?). IV iron sucrose takes 45min. vs. IV iron dextran's 6hrs. We know Little Man has symptoms from the iron dextran but we are suspicious that it is just draining to withstand an IV poke, followed by a 6hr.infusion. It takes him a few days to re-coop from that. We decide it is worth trialing the iron sucrose, to see if his body responds any differently, or at least see if the less time will be less draining on his system.
We move nowhere while getting IV iron- there are too many residual symptoms to know what is related to what, and it takes too much on his body. So any food trials we are doing, have to stop during IV iron. We are supposed to get it done two times a week, but with the 6hr.infusion, it is just too draining. A 45min.infusion may give us that 2x/week and get his iron restored so we can take those symptoms, and the anemia out of the symptomatic picture. It's worth a trial. It's always all about the trials.
Once again, he is fatigued during the IV placement, and lab draw- too tired to even fight me. We get through the 45min.infusion and come home to relax. I check his labs online, and see his hemoglobin is now up to 9.5 (from 8.5)! It rose a point with his previous infusion! I am thrilled, but wait....that means the recent fatigue isn't from the anemia? It's on the rise, a 9.5 is a GOOD hemoglobin for him! (normal range is 10.5-13.5g/dl). A look further down the list of CBC and I see his Leukocytes are low at 5.1 (normal range 6-11 x 10(9)/L) and his Platelets are high at 569 (normal range 150-450x 10(9)L). These are his "signature" post-reaction labs. Thankfully, they are only marginally away from normal range. They can indicate either inflammation or infection in the body. He isn't sick, but he is re-cooping from a mystery reaction.....now more clear, seeing these labs, it was a reaction- we just don't know for sure what to.
We expect him to re-coop nicely, following a rest on the iron infusion day....hoping his hemoglobin levels respond nicely again to this infusion. Instead - he continues to decline. Is he still re-cooping from the Saturday reaction? Maybe. But he is going on the wrong direction.....from bad to worse. Why? And why is he so sleepy? So fatigued? He seems flu- like, but isn't running a fever, has low muscle tone and is getting dehydrated looking, losing weight, and very pale. His diaper changes are green, slime, mucus, and blood specked, and very randic smelling. An FPIES family knows that reaction smell- the kind that you can smell from upstairs when he is downstairs! The kind that takes 8hrs.to clear from your house, even though you wrapped up the diaper and put it right outside in the trash. Yep, that diaper. But, how does that happen if the sucrose (corn) did not go through his gut? I suspect it has something to do with the involvement of the lymph nodes in the colon. At Little Man's first scope, lymphnodular hyperplasia was visualized, it has been clear on every other scope but I suspect this lymph system would be "processing" those recognized Tcells- and the evidence is in that diaper.
We hold him all the time for a few days- we contemplate bringing him in to see his pediatrician....we know there is little that can be done, and he is eating/drinking, and he's not throwing up, he's just so very tired. This is reminding me way too closely of his post-corn fail last July...and I'm getting nervous- when will he turn the corner? Two days later, with little change and no improvements, we try to get him scheduled with his pediatrician, and are unable to that day. We got an appointment for the following day, and his pediatrician shares our concern that he looks "punky" and not his usual self. He assures me his ears and lungs are clear, his breathing is steady, his blood pressure is stable. We just need to wait it out, watch him closely, push fluids/his formula, the TLC we've already been doing. He assures me he is on-call and wants to see him again if he does not improve.
Already he has been making improvements that day, so we are hopeful he will continue to make improvements everyday. Thankfully, he does. Each day has gotten better since then and by this weekend (Happy Mother's Day), he was finally talking, smiling and playing again. His energy is still low, and he's still re-cooping but making great strides the past few days as well. We have some ground to make up, as he lost almost 2# over the past few weeks. His appetite has been picking up daily, and he does well as long as his probiotic is in his formula (getting small amounts in every bottle).
Little Man's daddy and I are sure this downhill slide wasn't as much from the reaction as it was from the sucrose- a full body response- sparing his stomach and small intestine. We will not plan to do IV iron sucrose again. It remains to be seen if we will need to go back to IV iron dextran. We are hopeful to trial some meat soon instead. How about Bison?
A quick recap: Little man had had a reaction to a new probiotic strain, which brought on some cold/viral symptoms, which brought on a fever, which confirmed an ear infection, that brought us to an antibiotic, followed by stool study results that show no growth of lactobaccilli and confirmed dysbiosis of good/bad gut flora; then a revisit to the Pediatrician confirmed a healed ear infection, followed by increasing tolerated probiotic (CD biotic from Kirkmans) to every bottle which results in a return to baseline and a little boy with no crampy abdominal pain that has become signature to his vicious cycle. An unplanned banana trial brought on ZERO symptoms from some tiny bites (typically re-exposure of a trigger food would bring on stronger symptoms with each subsequent ingestion following a break).
We went away for the weekend. We haven't gone far,or done much since Little Man was 6mo.old, outside of the trip to PA for his diagnosis at 11mo., and the recent trip to NJ to the PCRCD and a consult with a specialist in protein intolerance's. But this was a wedding reception, my brother and his new wife. This was important and worth the travel. We geared up for it, and things were going well. We were feeling good about getting to travel as a family again, about being ahead of this FPIES beast. I brought millet puffs, frozen peach slices, and a banana (since the previous day had brought on zero symptoms and I was curious to know how continuing it would go....and sticking to the same brand is a good idea- especially for a corn allergy because fruits always have a risk of having a spray on them that is corn-based. Dirty fruit, fresh from the grove or fields, or the Farmer's markets, will be our best bet, least gamble. Sometimes the wash can be washed off, sometimes it soaks in, it is just better to not risk it. Sometimes organic are spared this wash, but not always. These banana's were from the organic food store and he didn't have symptoms from eating it the day before, so I was hopeful.
The wedding reception was 5hrs.away and we were staying in a hotel. We went out to eat for breakfast and Little Man asked for his banana we had brought in a little tote for him. He enjoyed eating the fresh banana while we had our breakfast. He was so happy to be eating with us, so happy to be included, and I was so happy to be watching him enjoying food. We enjoyed the rest of the morning as a family, and then even had naptime for little boys. We had a late lunch, after naptime and little man had his peach slices I brought with. Peaches that I had frozen last fall, our supply is running low we knew it would be more difficult to distract him eating away from home, so I wanted him to have something for him, at the table. We don't have a huge supply of peaches, and he doesn't like to eat them everyday anyway. Again, he was so happy to be included - gobbling up his peach slices while we ate our lunch.....maybe even eating too many?
We finished lunch and about an hour later, he started to get fussy, wanting to be held, stomach ache (kicking legs, "climbing" on us, wanting to eat, not wanting to eat, not happy). We attribute it to eating too much peaches and having some trapped gas. We try to relax him (hot shower), try to burp him, try to help him in some way. The shower calms him down, and he seems to just want to go to sleep. He falls asleep on the way to the reception,and many times through the evening. He spent the evening in our arms (mostly daddy's)- he wasn't incredibly fussy, just very tired, pale and clammy. He started to get fussy later in the evening and we decided it was time to get back to the hotel room before he put on his own show. We got back to the hotel just in time for him to have 2 small spit-up type vomits, and then collapsed into a sleep. We knew then we were seeing stages of some sort of a reaction, but from what? And how much worse would it get? Or was it just from eating too much fruit combined with the stress of the trip? Was he having a stomach ache from constipation? Was the formula too much "kefir like" with the fermenting probiotic and upsetting his stomach? Was he having a reaction to the banana? Was it from the peaches (corn spray contamination)? Was it from cross contamination from the restaurant table (didn't wipe it off before he started eating)? We are puzzled, and starting to worry.
The next day, we drive back home and Little Man sleeps almost the whole way- running low grade fevers, looking pale....We get home and he had some explosive diapers. It was like a switch, a veil lifted and he felt better....not 100% but better- laughing and playing in the bathtub.
The next day, he was still not himself, and the diapers were confirming the reaction - and we're still guessing what to? We work on getting settled from the weekend and gearing up for his IV iron again. It will be the 2nd dose of IV iron sucrose. We are not 100% sure how he did on it the first time because he was already not feeling well, not eating well, and running fevers that day. We are beginning to think his recent fatigue must be related to his anemia and actually are looking forward to getting his next dose of IV iron, with a hemoglobin lab check to see where we are at.
As I look over my notes, the logs I keep for Little Man, it becomes more obvious of why his FPIES is so complex. We are trapped in one vicious cycle after another. The key to unlocking his aytpical FPIES will be in stopping his vicious cycle. But how?
His complexities lie in his Th17 responses. A response that is not completely understood, and currently is not even studied in relation to FPIES (it is that "new" of a discovered mechanism). It is exciting to see that there may be an explanation behind his atypical FPIES but without more knowledge- there is little to do with this information....except more research....by me. Another critical component of his FPIES is ongoing anemia. My instincts say there is a tie-in to his severe gut dysbiosis and his anemia. Iron is absorbed primarily in the small intestine. Frequently, those with inflammatory bowel disorders can have anemia as a co-existing condition. Little man has had chronic inflammation many months of his life, and chronic gut dysbiosis probably all of his life. We simply can not get ahead of his vicious cycle without knowing more of his mechanisms. And yet, we need to make decisions about what to do next, what to trial next, what best way to treat his anemia, or his reaction symptoms.
Following IM Rochephin antibiotic, little man had his all too familiar pain attacks. A trip back to the pediatrician to check on his ears (the reason for the antibiotic) and they were healing well, no signs of infection. This confirms that his familiar pains are that of his stomach aches. I had the thought to add the probiotic to each bottle, after finding out on the stool studies that he has no growth of lactobaccilli detected in his stools. That information, coupled with trialing the lactobaccilli probiotic, and seeing a plateau affect. This seems to have really helped. But then quickly discovered that after ~24hrs, the probiotic was fermenting in the formula (actually a good thing- creating Kefir without realizing it) and was not a taste Little Man was interested much in. He does enjoy the taste of the probiotic, has since we started it- just not of it fermenting! I have worked through a few changes in my formula recipe and making and again improved on his formula- fitting his specific needs.
We now notice significantly less crampy pain that has often become a chronic part of Little Man's cycle. Is this the affect from the antibiotic or from the increase in the probiotic? Or is it a combination of both? Will he be able to tolerate more foods finally?
We are hopeful, until....
Saturday, May 7, 2011
After being off of foods for a year, a young child does not have all the same drives to eat as you and I do. He does want to eat, but sometimes doesn't know how, or isn't sure if something will be safe. When something causes him stomach pain- FPIES related or not, he associates that with the food and then stops eating the food. There have been times when he will also stop drinking his formula (despite that being safe and not causing any pain). There is a lot of cheering, creativity, and encouragement just in food trials.
By the 3-4th try of banana, we began to see symptoms of concern.....disturbed sleep, tummy pains, decreased appetite, even fevers- that may or may not be related. Not sure of FPIES or not, but becoming clear it is yet another food to shelve until we can figure out what is wrong with his digestion. We are sure there is something connected to his digestion of these foods that is affecting his tolerance of them. Will they lead to a full FPIES immune response? We are not sure. But 1/4 tsp of food should not cause as much pain and sleep disruption as it does for him.
Banana was right before ProBioGold (probiotic) and the beginning of our slide (that we are still in), so was it initated by banana, ProBioGold, or a "simple" virus? And why does he struggle so much with any changes? Any movement away from his baseline and we risk the vicious cycle.
Fast forward to a month later (April 27) and we are in the store getting supplies for his homemade formula and his 3yr.old brother promptly puts banana's in the shopping cart as his addition to helping with shopping. My immediate initial thought is: I wonder if Little Man will ask for one if I buy these? Then I think of my 3yr.old and how crazy it is to be thinking of NOT buying him banana for a snack! So, I buy them and sure enough- Little man wants to share in the banana snack of his brother the following day. I let him, he is asking for food, a food we do not know for sure if it is unsafe, a food that we just a month earlier had been telling him was "his" food, that we encouraged him to try and it was "yummy". And now, he sees this food again and is asking me for it. A banana. I give it to him and he enjoys nibbles of it. He enjoys being included with his brothers snack more than the food itself! I am delighted that day as evening and the entire night go on without one concerning symptom. He has now had banana a few times now, after having it in his daily diet a year ago, and this snack did not bring on any symptoms?
Two days later, he has it again....although this day, we get symptoms. But now, we are not sure if they are from banana or something else. Is banana safe? The only way to know will be to try it again.
So, being in the place of needing an antibiotic, is concerning. Antibiotics will still affect gut flora, regardless of if it is taken in through the gut or an intramuscular injection. But, as I mentioned in a previous post, this may be something that could help- if we can control this "reset" of gut flora and guide the "good" microflora into re-gaining their healthy control role.
Now, with stool studies in hand, I begin to see why he has had such good responses to the one probiotic we started with: CD Biotic which is: Lactobacillus rhamnosus, lactobacillus plantarum, and a saccharomyces boulardii. It is like it is made for him. He needs lactobacillus as he has no growth in that (on stool studies), so it would appear he has no/very little "resident" flora of lactobacillus. Without a pre-biotic to help the probiotic "feed off of"- explains why he seems to plateau on it.
The rochephin takes care of his ear infection almost immediately. We are relieved for that. His fever drops, he begins eating more again, and he sleeps (and doesn't need to be in our arms, upright, to do so). We restarted his "safe" probiotic by adding it to his formula (so that it is in each bottle). He appears to respond well to this throughout the day. I skip the next day of adding the probiotic to each bottle, to see the difference and he has disturbed sleep, very fussy/whiny/clingy and seems to be having tummy pain (kicking legs, gassy, wants to be held standing up only....). Add it back in the next day and much less fussiness, less stomach pains. He even tried a banana.....
We get the results just in time, just in time for his fevers following change in probiotics and adding coconut (natural antifungal), just in time for antibiotics....his results read that he produces good amounts of bifidobacterium (thank you breast milk) and escherichia coli (E.Coli is a "good" and "bad" microbe, like yeast and others); but that he has NO growth of Lactobacillus species. None.
They then also test for "Additional Bacteria"- bacteria that could be potentially pathogenic ("bad" gut bacteria). He has much growth here- it would appear he has much more population of "bad" bacteria than of "good"; but the chart notes that only one is "potential pathogenic"....enterobacter cloacae. The others are listed as "non-pathogen". In addition, he produces high amounts of Saccharomyces cerevisiae microbes, which are a yeast bacteria but no other growth of yeast are present.
The commentary/analysis reads: "Sufficient amounts of Bifidobacteria and E. coli appear to be present in the stool, however Lactobacilli is below optimal levels. Ample amounts of E. coli have been associated with a balanced gut flora. The "friendly bacteria", Lactobacilli and Bifidobacteria, are important for gastrointestinal function, as they are involved in vitamin synthesis, natural antibiotic production, immune defense, digestion, and detoxification of pro-carcinogens and a host of other activities.
Ideally, levels of Lactobacillus and E. coli should be 2+ or greater. Bifidobacteria being a predominate anaerobe should be recovered at levels of 4+."
The tests also give indications to determine which antibiotic sensitivity and resistance at standard dosages. It goes on to note that prudent usage of antibiotics requires knowledge of levels of those agents, so the tests show what antibiotics will be more likely to inhibit growth of the pathogen identified (enterobacter cloacae and yeast saccharomyces cerevisiae). Antibiotics kill off all microflora but "good" gut bugs are more susceptible and are killed in larger numbers, thus allowing "bad" gut flora to overgrow; and thus dysbiosis results. Diet, environment, anti-fungal medications, probiotics will all help to control and correct this dysbiosis but knowing which antibiotics will cause less growth of the pathogen will be helpful. It also goes on to illustrate which natural substances can help keep this pathogen from overgrowth, such as Berberine, Oregano, Plant Tannins, and Uva-Ursi, Garlic, etc.
The chart notes "Human microflora is influenced by environmental factors and the competitive ecosystem of the organisms in the GI tract. Pathogenic significance should be based upon clinical symptoms and reproducibility of bacterial recovery". Their disclaimer is one of evidence-based medicine argument against the reliability of these tests.
It reminds me it is a tool. But, like with so many other tests (of IgE/typical included) of allergies, are all tools. The true test is in how each body responds. It is Janice Vickerstaff Joneja that explains that well, on her website Allergy Nutrition..."what is most surprising to many people is to hear that food does not cause allergy or intolerance – in fact food is incapable of causing disease! Food is not like a bacterium or a virus that can cause infection; and food is not like a cancer cell that can multiply unchecked and cause havoc in the body. It is the body’s own response to the food, a component of the food, or something added to a food product during it’s manufacture, that causes disease". How do we change the body's response? From the inside out. We heal what is "broken". In Little Man, clearly his gut flora is causing serious complications.
Wednesday, May 4, 2011
I have learned that IFN-g and TNF-a are specific Th1 responses, which are the bodies response to invaders, bacteria that protect our bodies with immune responses. In a fine-tuned body, these responses go primarily un-noticed. But, in FPIES, these responses are uncontrolled as the body launched these against food. Seeing that Little Man has little response at this level but does produce counter-regulatory mechanism (high) tells us that his FPIES is atypical. But we already knew that....now we have a glimpse to why...
Th17 is a newly discovered Thelper cell. It is part of the GALT (gut associated lymphoid tissue). It is an alternative back-door to the Th1 response, through the gut. It can be controlled, or further exacerbated by the gut environment. One of Little mans worst reactions is to his own gut flora, Candida. He has severe dysbiosis and it is causing "leaky gut" which is causing him to build Th17 responses to every protein as the body is presenting these antigens in a dysregulated mechanism...likely due to his gut dysbioisis. If we can correct his dysbiosis, heal his "leaky gut", we increase his body's ability to regulate itself in respect to foods and the immune responses. Refer to my FPIES File Cabinet for a post on Leaky Gut.
Where do we start? We begin by removing all his allergens. Moving from formula to hemp milk many months ago accomplished this; but this move hasn't been without it's side effects. While this diet provided him with a safe nourishment of calories/protein/fats, it has not helped correct his dysbiosis. The missing micronutrients and diverse source of nutrients likely have made it more difficult for his body to maintain any homeostasis achieved, even with daily probiotics.
1. Remove allergens.
2. Provide nutrition.
3. Promote healing.
4. Correct dysbiosis and achieve gut homeostasis.
We are stuck in the dysbiosis and healing stages. We have healed his intestinal tract but there is more to healing the intestinal health than healing inflammation. We have clearly not healed his leaky gut or achieved gut homeostasis.
Going to the PCRCD gave us the confirmations of his severe dysbiosis, and his atypical FPIES. But now what? We are working our way through probiotics, we are getting stool studies done, and then we hit bumps in the road and everything comes to a halt, and even go backwards. The Vicious cycle continues...