Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Sunday, January 30, 2011
Even as I sit here and type- I am doubting the fail. Why would I doubt the symptoms that were off baseline and adding up? How can I doubt the vomiting that was choking him, and soaked through his clothes, including a winter jacket and carseat?
I was using a buckwheat flour to make his Merry Muffins that he has been enjoying (and being incredibly tolerant of me changing flours on). The first day, he merely took bites of his muffin- which I was actually thankful for- so I didn't have to worry about taking it away from him when he got his "dose" for the day. He mostly played with it, but I am ok with him playing with his food- sensory stimulation is just as important for him right now.
Day 1: I began to see the RRD and spots on his bottom- I tried to think they were just residual from millet, or the orange pulp. His cheeks got a little rosy and he was drooling within 2hrs of eating those crumbs, he also had some mottling and irritability. I had a quick errand to run so I did that and he quickly fell asleep in the van -- it was only an hour or so before scheduled naptime so I wasn't worried about it but he woke up when we got home so of course he was moody for the rest of the afternoon, in fact he screamed for almost 2hrs straight- even inducing some vomiting from all the crying (or so I thought). But then he ended up taking a late nap, so thought we were getting back on track. And then when he slept so much better than he has in months that night- I was hopeful. He has been getting up every 2hrs. (not always to eat) and this night he slept a 5hr stretch!
Day 2: He enjoyed his muffins a lot more, and ate an increased amount (this is difficult to trial with muffins but just keeping his servings low and controlled), he had some similar symptoms - but nothing worse so I was hopeful we'd get through all 4days of this trial, take the break we wanted to take, and then restart in a few days. The afternoon resulted in another missed nap (not by my choice but his); but another late afternoon catch up nap. And again a 5hr. sleep pattern (happy for sleep!)! But only after some disturbed sleep in the beginning of the night, but nothing too out of his new "normal".
Day 3. He barely even touched the muffin, I made him some muffin tops (cookies) and he took 1-2 tiny nibbles and then wouldn't touch it the rest of the day. A morning diaper change reveals a very "shiny" diaper with mucous. The symptoms again: more disturbed naptime, also- is he a tad hyper? Or is it the normal over-tired toddler behavior? His mood is primarily happy but he is becoming less tolerant of things....a sort of Dr.Jeckyl and Mr.Hyde.....and I'm getting tired! :) Holding him during an afternoon bottle (in another attempt for a nap)- I notice his look of pallor, he gets a distinct bluish/purplish tint to his upper lip, also his eyes start to have this same tint. Afternoon goes on, and he is getting tired, well a 20minute nap for a 19mo. old will do that but he won't settle down for a nap. His brothers had been asking me all day if they could go to the pet store...do a little window shopping for their new pet hamsters...it was getting to be a long afternoon so I thought a change of scenery would be a good idea, so I agreed.
Little Man started his screaming tantrum right was we say we are getting ready to go...which is already odd because he LOVES to go "bye-bye"! He proceeds to cry but we load up to go anyway- thinking maybe he'll calm down when we get moving. The crying continues, and is curious as this is the 2nd time in 3days that he has had this crying episode in the van....these episodes he used to have ALL the time as an infant...so many days of SO much crying stress whenever we had to leave the house -- I simply dreaded going anywhere with him! But it has been SO long since he acted this way in the van, in fact the van seems to have a calming effect on him....not lately. I am trying to chalk it up to circumstance (crabby toddler from no nap), or mood/behavior (but he is actually a very mellow kid -- when not on food trials). As I'm thinking and driving, the puking starts....then choking and more and more vomit. He is covered. I am still driving. No where to exit. A mothers worst nightmare. He does stop after 3-4 good heaves. I immediately turn the van around and head home- not stopping to clean him up as it will only prolong the agony. He's still crying, screaming. We get home and I quickly get him out of his carseat and into the bathtub. After getting him cleaned off, I got him a bottle and we sat and rocked- he calmed down. Finally. He fell asleep after taking some from his bottle so feel he is doing good. Was this a reaction? Did he just choke from the crying? Maybe. I put the other boys to bed and I go to clean up his clothes and car seat. His entire outfit was soaked, as if I had dunked it in his bathwater with him still clothed (I did not), his winter coat is soaked through, his car seat has a puddle still in it, and a puddle that leaked to the seat below. The reality sets in. I want to cry. That is a lot of vomit. This is the 2nd vomit in 3days, with such off baseline behaviors. Buckwheat will have to be a fail, before it gets worse and we have a sick little boy.
I am defeated and deflated. We are missing something. He should be able to tolerate more than just peaches by now. I can't help but think we are missing something. Is it his gut health? Does he have yeast overgrowth? And underpopulation of good gut bacteria? Will a trial of a good probiotic be worth it, or will he fail that too? What about the peaches I use to make the muffins? They are a packaged peach product (Plum Organics)....I haven't called the company- just read the label. But what if these are the culprit? So many questions, still so many unknowns. We have come so far and yet we are still spinning. What are we missing?
Saturday, January 29, 2011
With protein intolerance's, you may be able to have a food if it is cooked or the oils or in low threshold amounts- the body can "cope". Protein intolerance kids can often also handle a rotation diet. A rotation diet can avoid a "build up" of the proteins while still keeping the foods in the diet for their nutritional value, and while also building up the bodies tolerance of the food- training it, with each small incremental dose that the food is foreign but safe. With each dose, the body building more tolerance mechanism and less attacking mechanisms.
My question remains: is this safe in the FPIES child? The FPIES child with protein intolerance that the body is already primed for FPIES trigger attack mechanisms. Is the body so efficient at producing those mechanisms of attack...mechanisms designed for protection against viruses and toxins but attacking simple food proteins in the FPIES child....that every intolerance is vulnerable for FPIES?
It is not possible to include known triggers in a rotation diet, but could it work for trialing foods? Little man seems to build up intolerance's to foods at day 3-4 (or beyond); his body recognizes it as unsafe almost immediately (we can always look back at logs and see in hindsight that nothing was coincidental, that all symptoms eventually led to something) but we press through because we can't fail a food at the first signs of hiccups, or irritability or some disturbed sleep....when all these things can just be a coincidence and we would have no menu! And yet, none of those symptoms have ever been a coincidence, and his intolerance's build until we have to pull the food as it is unsafe, causing too many off-baseline symptoms or behaviors, or it has caused a trigger reaction. It would be unsafe to keep a food in the diet (even in rotation) if it is causing symptoms of off-baseline because the waters would get really muddy -- how would we know which foods were causing which symptoms and which foods are building symptoms and which ones are causing 'just' adjustment symptoms?
With an FPIES diagnosis, you are given a set of instructions for food trials at home, there are variances to these schedules but they are all similar in that they are small doses over long periods of time. The reasoning behind the slow introductions is to stop before the symptoms build to the full blown fail....the tricky part is finding that line of "are these build symptoms" or "are these body adjustment and/or intolerance symptoms?" Keeping a food and symptoms log has been essential for this; although many FPIES children react from the first dose of the food trial. A second reasoning behind the slow introductions for protein intolerance is to teach the body "foreign but safe".
My goal has been, of course, to do this for Little Man. To introduce foods in his diet (in his muffins that he enjoys so much would be ideal) slowly, 1 tsp at a time....to build his tolerance while monitoring closely for symptoms. BUT- without a base diet first, or with missing micro nutrients....we aren't at that place yet to be able to execute this ideal FPIES scenario for food introductions.
So, that got me to thinking about a rotation diet- would a rotation diet of trial foods help us to teach his body foreign but safe without overwhelming it and pushing him past his tolerance levels? Would it make it less daunting to take breaks from a food beginning to cause symptoms? Little man seems to do ok with foods for the first 1-3days, and then intolerance's really begin to add up. Is this because they are closely related to the proteins he has had reactions to (grains and dairy?). This is why I have been picking foods he hasn't ever had before, or that aren't related to his FPIES triggers. Millet is a seed but it is in the cereals food family so we were taking a risk on it. Millet is still a mystery.
To execute a rotation diet, it would need to be closely calculated out - trial a food for 2-4days, give the body a break (3-5days)- reintroduce....teaching the body- foreign but safe (building the Th3 response to override the Th1 response mechanisms?). Similar to oral immunotherapy that is being found successful for some allergies?
A few important FPIES considerations:
1. It would be critical to not go too long between re-exposures or the body will 'forget' it's tolerance mechanisms.
2. Also critical to not push if reaction symptoms persist or build (body is building attack/Th1 mechanisms instead of oral tolerance/Th3).
3. Essential to stay at dose tolerated (or less) if symptoms begin to build.
4. To return to ONLY safe base diet during the "break" if there are any off-baseline symptoms noted (and not rotate to new trialed food).
In my head, on paper, this works....with Little man it hasn't, yet....
Tuesday, January 25, 2011
1. Delayed reactions: he has always had, what we coined a long time ago as, his "honeymoon" period- he would do ok on something and then it would build and hit!
2. Constant re-exposure to a common-related proteins (also trace and cross contamination of trigger proteins) can result in chronic FPIES.
3. If we press it- would everything related to his triggers eventually be unsafe. Millet is in the "cereals/grains" category- but it is a seed, so a pseudo-grain. But is it closely enough related to the other grains his body has FPIES triggers to (corn)? Rice is one of his triggers...now. But he did not have an acute reaction to rice when we started solids, he had throwing up reactions to reintroduction of rice (after stopping it and trying oatmeal to see if I could get him to eat it better) but after taking a 3mo.break from all food and reintroducing food starting with a dozen rice puffs and getting violent vomiting did we consider it an FPIES trigger. Also happened with dairy and soy- soy is not a clear FPIES trigger but his body was not accepting it- but it was a slower (delayed) process. Will this be the same with so many foods for him? Is it why hemp is safe, and arrowroot- as they are in their own families and unrelated to the proteins his body perceives as a threat?
How do we get past here? How do we get off this wheel? What do we trial next? He has oral aversions so he doesn't want to eat just anything, but he has been reaching and begging (tantrums really) for our food. We again, battle every mealtime, every time his brothers eat and he can't, every time I cook and he can't help me...it is torture for a mom to endure. I just want to feed my little boy!
So, millet remains a mystery but is it teaching us something too? For now, I have put it on the "see you later" list. We may have already gone too far with it. But, we'll look to retrial it again when we have more safe foods in his diet; see if we can't find a dosage that he can tolerate without symptoms -- symptoms that disrupt sleep and cause stomach aches and weird diapers, symptoms that are worrisome for building a full blown reaction. How do we avoid these build reactions? My thoughts keep going to a rotation diet....
Too many questions remained- was this all 'leftover' from the fail? Was he still inflamed? Was he going downhill again? Was it from the foods we previously thought as safe (millet, peaches?). We did wait until after the vitamin to reintroduce millet, and these symptoms took a couple of days to build. I changed the recipe, saw less symptoms so was hopeful it was just too much for his system. Then stopped millet to see if that could get us back to a baseline. Unfortunately, a orange pulp (yes, just a pulp-not segment or a slice, a pulp) brought on the symptoms in full force! Stopped everything for a few days, work our way back to some sort of a baseline and then re-trialed millet this weekend with a return of some/most of the symptoms.
We can now assume it was all related to the acute reaction following the vitamin fail. The biopsy results came back today and he is clear of any inflammation!! So, this tells us: 1). that he is healed from the vitamin fail (3weeks); 2). That everything in his diet is safe (non-FPIES trigger)- his formula, his peaches and millet (although millet remains a mystery); 3). That we may need to do a "bland" diet after fails; and 4). That he is ready for the next trial.
These are good results, one more step conquered. He may need future scopes like this- to prevent him from spiraling again, as we continue to learn what intolerance's look like vs. FPIES trigger foods all compared to his baseline.
Saturday, January 22, 2011
Could it be GMO foods? Interesting food for thought. Do Genetically Modified Foods Cause Allergies?. I recently called our local natural food store to discuss if they had non-soy/non-corn fed chicken eggs available, or knew of anyone that did. She was apologetic that she did not know of anyone, did note that she herself had fed her own chicken a grass only diet, they didn't produce many eggs. Then she went on to say that she did know that the eggs they had in the store were from Non-GMO fed chickens. Interesting thought entered my mind at that time...well, that may help future generations (which is good) but unfortunately the damage has already been done for my generation- for my son already allergic to corn. I really see that GMO food can be a big answer in the "why" to the increase of food allergy. I doubt that it is the only reason but certainly a main culprit.
PS- this Grass Fed Traditions was recently shared with me as a source of soy free chicken and eggs, as well as grass fed meats. I have not checked to be sure they are non-corn fed as well but it certainly looks promising so wanted to share it here.
When a mom on a corn-free babies board I visit said, "Corn allergy seems to be a pretty big nightmare but to me, it is much better to know and be able to manage than to feel like I am missing something and my baby is suffering for it."....I felt like nothing can sum it up better.
Recently, an article has gotten some wheels spinning for me (and other corn allergy sufferers). As if a corn allergy isn't very real, or that it is not important....that those suffering from it simply need to just deal with it- for the sake of the economy? That is the message I received from this article: Allergies: nothing to sneeze at.
Now, I am not one to think the world has to change to accommodate my needs, my son's allergies. What I would like though is: 1). acknowledgment that a corn allergy is very real. 2). awareness that corn is in everything (don't worry about keeping track- I will do that) and 3. DISCLOSE and LABEL that corn is in your product....and the VERY least - when I call your company to ask about the source of an ingredient, please do not tell me "I don't know where it is from, it's just not from corn"....if you don't know where it is from- it is probably from corn. It can be refined, processed, fermented, proteins removed and my son will still react to it.....so I need to know. I do not hold anyone else responsible for his allergy, but I need to know because I am.
Friday, January 21, 2011
That is where we were a year ago. But today, we have made many advances in recent months and yet- we can't seem to stay off this wheel. Trial followed by fail, followed by inflammation- is it healing, is it not healing? What is going on in there?
We had plans for next steps, but we're stuck. How long will we stay stuck? Even with the best laid plans, FPIES is in complete control and it's not giving an inch.
It is understood that when a trigger food is ingested, the reaction is a t-cell response; where the body attacks the food as if it was a toxin in the body. This results in an acute and severe gut inflammation. We know Little Man had complete gut healing with TPN, a mere week before we trialed the multivitamin, we had confirmation of that from the upper endoscopy he had done. But now, we are not sure how much inflammation he has from the vitamin fail (thought to be from the corn starch in the vitamin), and an even bigger question- how long does it take to heal?
We continue to watch for the signs of decreased inflammation, a weight gain would be a a good sign. We don't have that, despite eating 1100+calories/day. Sleeping for more than 2-3hours at a time would be good. We certainly don't have that. I feel like I have a newborn baby, eats every 2hrs all day long and then up 3-4times a night. I'm lucky if he eats and goes right back to sleep. We are looking into other reasons why he is not getting restful sleep though- more on our upcoming Sleep Study later.
For now, we go back to the GI- we have agreed he needs another scope. We need to know why we are stuck on this wheel- is there something more than inflammation going on and how bad is it? We go in Monday morning for that. We will also get a flex.sigmoidoscopy as well, to check for sources of bleeding as his diapers show signs of blood tinged stools again (along with the flecks of blood thought to be from a fissure).
In the words of another FPIES mom this week: "Where do I send in my resignation papers?" I want to be done with FPIES. Or, at least- if I can't resign...where can I get a vacation? Not even a vacation from little man- can I just get a break from his FPIES? It's been a long week- as the stress of a food trial and fail brings on is both emotional and physical. And I've felt deflated more than once. On my knees....asking for help from Above....asking for the continued strength, the direction to go in next, and most of all- to be a better mom to all my little men. FPIES has grabbed such a strong hold on our lives for so long, we struggle everyday still. It is less and less these days than it was a year ago but we still look for new ways to cope with it all. New challenges that keep coming our way and more and more on this wheel. We were just ready for a break. Will that come soon?
The family that prays together, stays together....we will get through this....we thank all our family, friends and supporters for all the prayers over the past year. We feel the strength of the prayers offered up for us- we have been held up by your prayers....bless you.
Thursday, January 20, 2011
I've been finishing this post in my head with how I want to desribe what an FPIES expert is. Lets start with the definition of Expert from: merriam-webster.com: "having, involving, or displaying special skill or knowledge derived from training or experience". Well, my training is in nutrition and my experience is a 4th time mom with first-hand, deep-in-the-trenches FPIES experience.
Parents are experts in their own children, they know their moods, their cries, their personalities, their likes and their dislikes. To add to that, the parents of FPIES children quickly become experts in FPIES. We have to, there is so little known. Yes, there are studies, such as FPIES caused by Solid Food Proteins and FPIES: Case study presentations and management lessons but there is only so much everyday information that one can gather from these studies. At this time, the most I have learned is from other moms, found in online communities for support. We would all like to see that changed, so future children do not have to suffer as ours have - searching for a diagnosis, a direction, a baseline.
A few days ago, I did a post on what FPIES has taught me. Of course, having a son with a chronic illness has taught me a lot about patience, advocacy, perseverance, strength, love, and all that life has to offer. But I am talking about what FPIES, first hand, has taught me about Non-IgE food allergies, delayed-gut, food allergies. About digestion and GI health. About food, and how it is made,processed and produced in this country. All these things, I have been taught/trained in- I have a degree in Nutrition....but none of these things I understood the way I understand them now, having learned things from experience. What I haven't learned first-hand, I have learned from other moms- with first hand experiences. Connecting all this together for real FPIES information, real help.
This brings me to my daily question: if I'm an "FPIES expert"- then why is my son struggling so much to find a diet? To tolerate foods? God is giving me a very important, and strong life lesson. He sent Little Man because He knew he was strong enough to endure this- to teach me, to teach his daddy, to teach his doctors, all to help other children. He knew that with my background, and my nature to want to help others- He could use me as an instrument.
If Little Man hadn't been as sick as he was, in pain daily we would not have made the trip half way across the country to take him to an expert Allergist, if he had tolerated the Elemental formula, if we didn't have to fight with him to eat just half of his needed calories from that formula, to remain on it exclusively- keeping food from him for 5mo. with only worsening symptoms (and inflammation) - I would not have had the drive to make my own formula for him. If Little Man didn't have continued intolerance's, making his illness complex - I wouldn't have pushed for 2nd opinions and a change in doctors on his Medical Team for his care. If we hadn't done a soy trial- would we have known about the villous atrophy component of his FPIES? God is putting all this in our path, all the atypical FPIES experiences in one Little boy so that his doctors will learn and help other children; and so we will learn and pass along what we have learned in hopes of helping other children/families.
We, the moms, are FPIES experts, and the learning continues daily....
Saturday, January 15, 2011
I have learned:
1. Food journals are a must.
2. Cross contamination is a very real threat.
3. Trace proteins are enough to launch a reaction- minor or full-blown.
4. Trace proteins can be present in breastmilk, sufficient enough to cause reactions.
5. Not everyone will tolerate all elemental formula's.
6. It is possible to react to oils, syrups, and starches.
7. It is possible to be allergic to breastmilk.
8. Someone can be allergic to tapioca.
9. Rice is not a non-allergenic food.
10. It is possible to build your own formula.
11. FPIES triggers intestinal inflammation that is severe and acute; and it's effects can last anywhere from 1-4weeks to heal. Food trials should not be done during that time, a return to a safe diet is essential for intestinal healing.
12. FPIES can be chronic or acute, or both.
13. Exposures to trace proteins can exacerbate a chronic condition, exposure to whole proteins will launch an acute on chronic reaction.
14. Vomiting and diarrhea are the bodies way of ridding itself of the (perceived) toxin.
15. Shock is scary, and should never be underestimated.
16. Acidosis is scary, and is part of an FPIES reaction.
17. Corn is everywhere- be aware.
18. Advocacy is a must, teaching opportunities are everywhere.
19. Corn should be in the Top Allergen's list
20. Don't assume labels will be listed for cross contamination's.
21. FPIES can cause villous blunting/atrophy.
22. Non-food sources can trigger an FPIES response- even if not taken orally.
23. FPIES is a cross between IgE Anaphylaxis allergy and Celiac allergy. It should never be underestimated.
24. I should never be underestimated.
25. I have so much more to learn.
And now, the waiting....waiting for intestinal healing, for the inflammation to subside. Outward signs of this? Weight gain, little to no sleep disturbance, no reflux pain....back to baseline. We don't have that yet. It's only been a week. Previous monitoring following reactions reveals that it takes a minimum 2weeks for Little Man's gut to heal- for him to get back to baseline. A weight check this week at our GI appt shows weight maintenance. We will follow up with a weight check again this week, as we watch and wait for any other signs of active inflammation to subside.
1. Sorghum puffs. Ordered online, waiting for them to arrive. I also have sorghum flour- so we will do a full trial (really hoping for an uneventful trial- it is a "bland" flour), adding the flour to his Merry Muffins and letting him eat the puffs. Sorghum doesn't move us ahead on the nutrients front too much, but it does help his aversions and actually EATING his foods to trial. The daily millet puffs really helped overcome a lot of gagging issues he was having, gagging issues we are seeing again. The millet puffs have potential for cross contamination (despite millet itself being a gluten free food), so we are not allowing those for now (if ever). Another mom found the sorghum puffs, so it was decided we will trial this next- to advance his oral motor skills.
2. Quinoa. Quinoa provides another good source of proteins, while also giving us a psuedo-grain to work with (quinoa is a seed) for muffins, cereal, breads, ec. There are vitamins and iron he needs in his diet. Hemp is a seed, quinoa is a seed. Quinoa also comes in puffs- another snack.
3. Beets and Spinach. Beets, spinach, and quinoa are in the same family. "Foods belonging to the chenopod family-including beets, chard, spinach and quinoa-continue to show an increasing number of health benefits not readily available from other food families". This link offers great information on not only the nutrition but the anti-inflammatory and many benefits of "powerhouse" of beets, spinach and quinoa: WHFoods. Beets and spinach can be hidden in foods (like his muffins, some cookies and biscuit type product) cooked with the Quinoa! What a great combination...if he passes....
4. Multivitamin- this remains a dilemma. I am hopeful (optimistically and maybe delusional) that we could build him a tiny menu specifically attuned to his nutrient needs. But the reality is that we may not get there. Because we do not want to risk continued fails, from corn derived ingredients in processed vitamins, we are taking a pause for continued research while doing food trials. We will be coming back to the vitamin....
This could all take up to 6-8weeks to accomplish- depending on how these foods treat his body. It could take longer if we have a fail, depending on the extent of the fail. Stay tuned, we are hoping to start step #1 by the end of this week/this weekend- sorghum puffs!
A few nights ago- just fresh on the excitement that Little Man was eating his Merry Muffins; we had a rough night of no sleep, coupled with gas? attacks. He was just so uncomfortable. But it wasn't constant, it wasn't inconsolable- he would console, fall into what seemed like a relaxing deep sleep; only to be awoken by a waxing/waning, what I can only think to be gas pain. It wasn't reflux-y pain, he wasn't arching and it was lower. He was thrashing and kicking his legs...and passing gas.
We make it through the night, and he is a happy boy in the morning. What is this about? These are his safe foods, safe ingredients to make a safe food- muffins. What is going on? Are his safe foods not safe? Is his inflammation hurting him? How much inflammation does he have, from the fermented corn starch (tested negative for detectable proteins but apparently still has trace or cross contamination of corn) in that vitamin trial.
Is the inflammation making it difficult for his body to breakdown/process/digest even his safe foods? Maybe.
I post the question for feedback on the active FPIES support group and am reminded of the other little one's that experience similar "threshold" to foods - grains, vegetables, fruits, and sugars. Daily servings need to be monitored closely as to not cross over a threshold of tolerance (for unknown reasons, not FPIES triggers- simple digestion tolerance)- carefully teaching the body of the safe food. Also, other mom's express success in pseudo-rotation type diets. I have had this thought about Little Man for some time....that even when we do get "passes" for a tiny menu- we will have to watch his menu closely as his body appears to be so sensitive to subtle changes.
Why does this happen is my pondering question. Pondering....pondering....pondering....because if I can figure out why it is happening, then I can help him more- right? I hope so.
I wonder if it is similar to a flare in Chrons or colitis, a flare of intestinal inflammation so bad it causes a bowel obstruction. The treatment for this is often bowel rest and a bland/low-residue type diet. Millet and peaches are safe-nonFPIES trigger foods, but if he has inflammation - his body may be less able to digest the sugars and proteins in these foods. We will have to limit his consumption for now, play around with recipe modifications, and monitor for signs of healing from the recent fail.
The next 2 days, with scaled back amount of muffins- we have had better sleep. Still waking up, but to eat and then goes back to sleep (mostly)...
For now, Little man continues to take his hemp milk formula very well - meeting his caloric needs daily. Weight gain should follow.....
The last treatment was one week ago, a lab draw a few days later revealed a hemoglobin of 10.8! His body responded well to the IV iron therapy and rebuilt his iron stores and red blood cells. Anemia will always be a component of his diagnosis and he will receive IV iron periodically until we can get him past the curve on his tiny menu to some more iron-rich food sources (ie- MEAT!).
With the news of the restored hemoglobin levels, we were finally able to remove the PICC. Little man had the same PICC line for 38days, we kept it clean and intact and NO infections! Whew! And it is now out - he got a treat last night, and then one just for the heck of it this morning- a full-soak-up-to-his-chest- BATH! A no-soap bath, but still, playing in water, soaking bath is a treat. We had given him a few baths over the course of the weeks, but with an arm wrapped in plastic, it was more of a chore than a relaxing activity. Sponge baths were easier.
We will do lab checks every 2 weeks for the next few months, as well as IV iron therapy once a month for the next 3 months. We will not let any slippery slope land us back to a PICC line again.....we hope, and pray.
Now, onto food trials....soon....
Wednesday, January 12, 2011
The blow-out-diarrhea diapers stopped on Monday, now we have hard/dry/blood streaked ones in their place. I am only assuming this is another side-affect of the dehydration effects carried down. Despite how much he drank (has been drinking good amounts of his formula), he has barely stayed above the dehydrated "markers". His lips are dry, they crack and bleed daily. His labs drawn on Sunday revealed some concerns for dehydration signs (3days after the reaction), and now his stools are hard (not his normal), so hard they are causing bleeding. And then, there are the tummy aches that go with constipation.
How long will it last? How much pain is associated with the fail, what if symptoms are from other foods (previously thought to be safe)? Do even his safe foods cause problems when there is inflammation (with no problems when not)? When will he stop losing weight? How do we know he is improving or barely holding on?
And then, there are nights like last night....where I lost track of how many times we were up. Little sleep doesn't help with recovering either. I feel like his system is over-sensitive when he is recovering from a fail so we see a lot sensitized symptoms and it is hard to know how to proceed (without causing further damage or slowing down the recovery to back baseline).
Last evening, he needed a bath. At this point, we have no safe soaps, his baths are water baths, followed by a quick scrub down with soapy washcloth and thorough rinse right before getting out. Too many times he has gotten sick from drinking soapy bathwater (soaps contain citric acid=corn, or other "triggers" and substances his body can not handle)....it isn't worth the risk. Since getting the PICC line, he has had only a handful of actual, soak-in-the tub baths. The PICC runs a risk of infections so between that and his potential reactions to soap- a full bath has not been worth the risk! So, most other nights we give him a sponge bath...one soapy washcloth to wash him off, one to rinse him down. Last night, I was intending on washing his cheek...he turned his head and I washed his mouth, he immediately licked the soap off his lips!! Ugh- I tried to rinse his mouth, but apparently I didn't get enough out.
I would assume that is why we had so much difficulty sleeping last night, why he was having so much stomach pains, and gas, why he couldn't seem to get enough to eat (coat the stomach). Now we wait out these symptoms as we search for our way back to baseline.....
Sunday, January 9, 2011
Projectile, forceful, violent until emptied stomach contents...sigh....sigh...sigh. This reaction reminded us a lot of when he was reacting while breastfeeding (trace proteins in my diet were likely culprits some days) because he was up for drinking his formula (he always was a comfort nurser too) and we feel this really helped him as he seemed to be doing ok. Of course, he was tired but I wouldn't call it lethargic -- it's always hard to tell at bedtime because of course they want to sleep...it's bedtime and they just emptied the contents of their stomach...I'd be tired too. But, his breathing and color were ok, and he drank a good amount of formula before going to sleep. So, we were feeling it was a "minor" reaction (it was after all just trace proteins). That is until the loose stools/diarrhea started....and they haven't stopped. He was awakened 3x during the night for explosive diapers, and continued to have them all day Friday, but then they seemed to be starting to thicken up (he was eating really well on Friday). So, things were looking good- his behavior was good and his color still looked ok.
Things started to turn around nap time (what nap time?). He couldn't settle in to sleep and I spent half the afternoon just trying to make him comfortable enough so he could find that rest his body was needing. Little Man's daddy and I decide, we are done with the vitamin. This was a "minor" reaction, from TRACE proteins and he is experiencing all of the all-too-familiar-going-on-and-on reaction symptoms. Friday evening started to bring on concerns as his color started to look off. We got stool samples to check for infectious sources of his diarrhea and we attempted to get a lab draw. From previous lab draws around reactions, we have observed that he gets elevated platelets, and often has decreased leukocytes as well. And then, there is always concern for his hemoglobin and his hydration. No lab draw, all attempts failed and all we were left with was a very unhappy and tired little boy. Having difficulty finding a vein, and difficulty drawing from that vein are very typical for Little Man around a reaction, also very typical among other FPIES children (from what other mom's share)....this is one of the reasons why an immediate IV for fluids is advised- not only for hydration but also because of the affects it has on the body only makes it more difficult to find that vein needed to start the IV fluids.
We have learned another lesson about Little Man and I am prompted to push once again for more detailed needs specific to his condition to be in his chart....we should have gone to the ER with that vomiting. But it wasn't severe, and he drank right after....but his body needed that IV. But I have no doubts that doctors would have disagreed- his color was still good, he wasn't lethargic, he wasn't dehydrated looking, and he was drinking....we would have wasted our time trying to convince ER doctors not familiar with our son and his very rare condition, that the IV would help him. Unfortunately, this is part of the nature of this diagnosis. The unfamiliarity of it leaves the parents making choices and decisions on their own that would otherwise be better guided by experienced medical staff. Little man has had more minor reactions than full blown, we are fortunate in that he doesn't always experience full shock- his body has had times of shock symptoms and also acidosis but these are not immediate- only after days of "fighting" and his poor little body can't take anymore, does he start to exhibit these signs. Would the immediate IV help? The thought (and experience from other moms) is: yes,it does. But, again- you can't just show up in an ER and expect doctors to insert an IV on a child that isn't currently in shock, or even to the point of dehydration...yet. How do we change this for Little Man? How do we change this for all FPIES children?
Typical allergies, with IgE mediated immune response, children carry epi-pens so that parents/caregivers are enabled to help their children, while still seeking out medical assistance. Non-IgE (FPIES) children carry an ER letter that describes an full blown attack with the recommendations for an IV and maybe even steroids-- but so many times the attack stops by the time you get to the ER, or the attack is seemingly minor (although I challenge someone to watch your baby vomit as violently as FPIES kids do and call it minor- we have classified it as minor because we have seen, and heard of, worse). Vomiting 50x in one hour, and your child's heart stopping- that is worse, that is "full blown"....so my Little Man vomiting 4x in 15minutes until his stomach is empty and dry heaving but then stopping- that is "minor". But both scenario's need medical assistance, need the IV (and maybe someday there will be even better treatment options to helping stop the reaction) but for now- getting the toxin out of the body is the body's only defense mechanism. And maybe the IV not only helps with hydration so the body can re-coop better; maybe it helps to "flush" the system. It would be nice to know if this is something that would help our Little Man. We will look to try and get his chart updated, once again, to reflect his needs-- should this kind of reaction happen again; and given his history, it will....
Thursday, January 6, 2011
Was it something he received small amounts of/trace amounts? Was it from soy challenge? Was it from prolonged/unhealed inflammation? We have ruled out that it was from celiac (he is not on wheat), but what about gluten contamination? Is his system sensitive enough? Does he have gluten intolerance? I do not tolerate gluten, but I do not have Celiac (confirmed on biospy due to my symptoms and persistent/worsening IBS) so despite not being able to tolerate wheat in my daily diet- I can have small amounts, in a rotation type style diet. While nursing, when I had more wheat then I was accustomed to having, Little Man would be affected that night with gas, wet burps, and pain. We suspected a wheat intolerance. His first scope was to rule out celiac disease. Biopsy and blood test do not show any evidence of Celiac disease in his system. In July, we ruled out an autoimmune disorder by scope. This last scope ruled out a small bowel bacterial overgrowth. So, the questions remain: soy, contamination of something in his diet, or villi injury from unhealed inflammation. His inflammation (refluxing pain) had started flaring before soy challenge but the soy challenge could have pushed him "over".
I am nervous about villous atrophy happening again. We had no idea- we know he has had many bouts of inflammation, we knew that was part of his FPIES. Villous atrophy was an unexpected finding. We have successfully healed it, but how do we prevent it from happening again if we don't know what caused it? We proceed very, very carefully.
I've had a nagging feeling about millet safety, we stopped it in Sept (after a reaction that we later discovered was from tapioca starch in Vit.C compounded Iron supplement) and I re-trialed it but he wouldn't eat the porridge anymore. He avoided it, when I served it. I tried making peach dots with it- he picked around the ones with millet porridge mixed in. But,he LOVED his puffs! They have helped SO much with his oral aversion and texture practice- and pincer grasp! I felt if he was going to have a reaction, he would upon reintroduction, even if it was minute amounts like millet puffs. We didn't see anything that I could label as a reaction to the puffs, so we continued to let him enjoy his treats.
Recently, another mom was trialing millet- with puffs. The puffs were from another company. Her daughter began to have symptoms consistent with a possible cross contamination issue (recognized from a previous issue with a quinoa trial with cross contamination issues). I had known of her quinoa cross contamination. But I had not thought to double check the millet puffs for cross contamination potential. Millet is a gluten free food. Right? Well, before reintroducing millet puffs (hoping the 4 weeks in the hospital would allow him to "forget" about the puffs since previously he would ask for them daily)- I contacted the company (e-mail and by phone). This was their reply (via e-mail)- my response was similar (not as much background) in my phone call inquiry as well.
Bottom line. Millet is a grain. Millet is a gluten free grain. Not all millet can be considered gluten free because of manufacturing and processing potential for cross contamination. This company makes wheat puffs and rice puffs, along with their millet puffs. Their practice is to sanitize the line before changing products as well as discarding the first and last batches but that they do not have dedicated equipment so could not guarantee the puffs to be free of gluten. Here is their e-mail response. I'm not sure if it is a real answer? Or more of a CYA (PS- I'm disheartened by how much CYA I have had to encounter on this journey).
Dear Ms. M
Thank you for taking the time to contact us regarding our Puffed Millet. We strive to maintain the highest quality products and appreciate your patronage.
We consider gluten to be in the following, barley, bulgur, couscous, durum, graham flour, kamut, malt , rye, semolina, spelt, triticale and any other types of wheat. We do not consider any oat products to be gluten free due to the fact that studies are needed to determine the long- term safety of oat consumption. The issue of cross contamination with oat and wheat remains a concern in North America.
Consumer health and safety is our number one concern. We do not have lists of products that are specifically considered to be gluten free. Reading the label is the best way to check for the presence of ingredients which contain gluten. If gluten is a major ingredient, it will be specified in the ingredient list.
Hain Celestial Group products that make a gluten-free claim will carry the triangular Gluten-Free symbol, be labeled gluten-free, or specify Gluten Free certification by GFCO. To learn more about the wide variety of gluten free foods we offer please visit www.glutenfreechoices.com. We hope you find the information, recipes and articles to be a useful resource.
The Hain Celestial Group's labeling declares major allergens (peanuts, soybeans, milk, eggs, fish, crustaceans, tree nuts, and wheat) and we follow the U.S. FDA's regulations. We recognize the serious nature of the allergen issue and we strive to minimize risk.
We assure you that strict manufacturing processes and procedures are in place and that all of our manufacturing facilities follow rigid allergen control programs that include staff training, segregation of allergen ingredients, production scheduling, and thorough cleaning and sanitation.
Thank you for your continued support. If we can be of further assistance, please feel free to contact us at 1-800-434-4246, Monday through Friday from 7AM - 5PM Mountain Time.
Consumer Relations Representative
Ref # 2182464
This last statement confuses me the most....the "potential allergen" of cross contamination is not listed on the Millet Puffs- which is why I assumed they were allergen friendly (being a gluten free grain). A lesson learned. But also, we may never know if that was the culprit to the atrophy. Both major and minor ingredients of all products, as well as all processing procedures and equipment, are closely scrutinized and all potential allergen issues as determined by the Hain Celestial Group are declared on our labeling.
I have found a few other "contenders" but this is the one that has the least amount of corn derived ingredients, the least chance for a reaction. If he can't tolerate this one.....well, I don't know....
We are on day 3 and already things don't look promising.
Day 1: 8am, Multivitamin given. 25min after giving it to him, he had hiccups....ok, could be random- certainly not a reason to stop a trial but, I take note. 2 hours later, his cheeks are significantly mottled (can be part of his cascade) but maybe his body is just adjusting, or maybe he's stressed or cold (other reasons for mottling to flare). His mood is good. 4 hours after giving it, he takes a long nap....again, this could be concerning- lethargy precedes reactions too. 7hrs after taking it, he starts having wet burps; and then a loose blow out diaper. Crap. Crap, crap, crap. 11hrs after consuming the vitamin, a wet burp leads to a gag while eating and throwing up. Not projectile, not violent but throwing up, he's gagged on his bottle before (not throwing up) but maybe it was just that. That night he didn't sleep well, was awake a lot but didn't want to eat. Didn't seem to be in pain- just couldn't sleep. Disturbed sleep. Well, maybe his PICC line is bothering him or maybe it was just something random keeping him from sleep. See how fun this is?
Day 2: wakes up with blow out diaper. 7am multivitamin given. Spits some of it back out (who can blame him?) It is a capsule that you break open and mix in something. I mix it in water. It tastes like, well- a multivitamin. His breath smells of vitamin all day. His color doesn't look good in the morning. A diaper change for, you guessed it- another loose, watery, foul smelling diaper- this one has small streaks of mucous. Changing him reveals the red ring that shows up when he is reacting to a food. Well, maybe his bottom is just getting sore from all the diaper changes. IV iron therapy day, long day but he was doing well all day. So, starting to hope that the symptoms are random or not going to build and worsen. The evening goes well, he has continued to eat well, and no throwing up tonight.
Day 3: Sleep last night was less disturbed, but there are cries in his sleep; and he is awoken in the early morning hours to a blow out diaper- explosive and watery. 7:30am multivitamin given, no spitting it out this time -- although he does NOT like the taste of it, he is a champ and he takes it from the syringe. 30min later, an explosive watery, with mucous strained diaper change. A call to the GI doctor to update on these symptoms. She is concerned as well but hopeful what we are seeing it re-adjustment from TPN to hemp formula that he is increasing in amounts daily. She agrees these are patterns worrisome for FPIES reaction specific to Little Man, but we need to push through to be sure, because of the importance of the vitamin and the non-specific pattern (at this point) to the symptoms. I agree. I am not here to make him sick and while the symptoms are concerning, they are not clear....yet. Only time will tell, only continued trialing will tell.
As I write this, I stop to change a diaper filled with mucous and hints of that rotten barnyard smell. I take a picture because the mucous is clearly there. The mucous is increasing, the diapers are increasing. His formula intakes are staying the same....formula he has always tolerated and has had no difficulties with since restarting a week ago. As I speak, as I write that I am trying to not be concerned, my concern grows. Especially since fussy Little Man has now entered, ups and downs of mood swings when something isn't right....
Day 4: tomorrow. Stay tuned.
The first couple of days home from the hospital, he took only ~30oz., but the past 3 days he has increased to ~50oz! 50-60oz./day is the volume he needs to drink....at 18cal/oz. But at 15calories/oz- he isn't meeting his needs. But he won't drink it thicker, will gag on it and distrust it and then drink less. A rock and a hard place, a balancing act....again.
So, we continue to be patient. A degree in Patience is essential with this diagnosis. We patiently await his body's adjustment while continuing to work it up slowly and coax him more, to drink more. To meet his caloric needs. To not lose the weight we just put on...3 1/2# of weight gained in 4weeks! Weight checks reveal we are slowly losing this week. We anticipated some loss with the IV nutrition stopping, from the decrease in IV fluids. We are hoping that is all it is.
It has been no small feat to get him to eat adequate amounts of his formula. He likes it, but he wasn't used to eating so much, so often- it had been a few weeks. His tummy was still so full and bloated from the TPN, he just wasn't as interested. My main goal has been to get him to eat. If it's time for him to eat (every 2hrs), I am stopping whatever it is I'm doing to sit down with him, cuddle, turn on his favorite show, coax and try, try again....whatever it takes to get him to take more and more. Each day we have made progress. It may not be enough progress but it is progress. Practicing my degree in Patience.
Increase formula volume, increase caloric value of formula, maintain weight. Do all this, while trialing a multivitamin. If he is unable to take in enough calories and maintain weight, accept the texture of his fuller caloric formula and begin gaining weight again...and soon...we may have to consider a G-tube for him.
A G-tube brings mixed feelings for me. A G-tube means increased nutrition, through reactions (full blown or "build" ones where his appetite decreases), although while they are having a reaction- their guts are not accepting food- no matter what form given, the inflammation is acute and severe. A G-tube means adequate hydration through a reaction (a minor one, a full-blown one would still need IV fluids as any fluids taken in would be expelled out). A G-tube would assure adequate caloric intakes on days when he is disinterested in his bottles, or slowing down enough to eat enough. A G-tube would take some of those kind of stresses away. But a G-tube would also bring on it's own stress. Surgery is a main concern (with yet another hospitalization and we haven't even fully caught our breath from the last one!), but get through that and then there is site care and preventing infections (externally and internal GI infections-with an added portal for germs to enter the risk is high). Another concern is that feeding him his calories via the tube and he will lose even more interest in eating and we would just have to give him more and more via the tube and he would have less and less chances for practice and increased risk for oral aversions. A G-tube is an answer, is it the right answer for Little Man? Would it be better for him long term? Would it give us more set backs? Would it be worth the extra stresses? Or can Little Man overcome the obstacles again? We let him guide us through this....