Mothers Intuition

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."

Saturday, July 31, 2010

Screams in the night....

Little man has been having a lot of pain at night, we are not sure why. Last night he did settle ok with a bottle when he woke up (he ate half his daily intake through the night - things got fuzzy getting up so many times with him last night!!).

Earlier this week, we had 2 nights where the screaming reached levels it has not in a long time- his pain was inconsolable and intense!! I went as far as the ER parking lot...but didn't go in. I am having a trust issue with doctors I do not know right now and I was afraid it would once again be suggested that I am malnourishing him. Being so "fresh" from the hospital still, I couldn't bring myself to go through that again - I may have a breakdown! One of the ways I have learned to cope is that I do not "deal with" doctors that do not trust me, and I them. So, being in the hosptial among many who did not understand FPIES and how it is affecting Little Man was very, very difficult for Little Man's daddy and I to cope with. So, we waited it out- together through the night, passing Little Man back and forth while we tried to steal moments of sleep through his peaks and valleys of pain and we brought him to our pediatrician's office first thing in the morning. Our pediatrician was not in, so we saw another one in her office. Intussusception has been brought up in the past and it was again at this appointment. Unfortunatly there isn't much to "test" for unless he is having an attack (if it is slipping in and out). So, if these continue to happen - we need to make a trip to the ER for evaluation.

The other piece of the puzzle is the continued maroon throughout his stools. I don't know what else would cause maroon stools mixed in with the green from the formula when you are on a diet of white liquid. So, I brought it in for a sample and his pediatrician ordered a was confirmed a few hours later that what we are seeing is in fact blood. But now to figure out why. Is it because of the continued assualt from corn proteins? Is it from the possible Intussusception? Is it from the irritation in his stomach lining? What is the pain in the middle of the night from? I think if we can solve one question we'll have our answer for the other....and we are just one step (one close step) away from his true baseline.


Little man can't stop saying it! To us, to his brothers, to friends, to strangers, to doctors, to nurses. The mask has been lifted, even if just briefly, again. Little man has lived so many of his days in pain, that he doesn't waste any time getting down to playing and learning new milestones, and words when he is pain free. He can say "hi","hi-5", "daddy", "momma", "woof", "quack", "neigh", "off", "on", "all done". He can give hi-5, wave bye-bye, clap, ask for his bottle, and he's learning puzzles. He also can walk and run of course! :) It is simply amazing to us that he catches up so fast to these milestones when he has less time to practice (because he has spent so much time in our arms, in pain).

We are very grateful we have pulled him out of his failure to thrive state he was heading down. Many FPIES kiddo's have this somewhere in their days, sometimes before diagnosis when little is understood about what is going on, and sometimes after when the right diet is being identified with food trials and eliminations. We have been running close to the wire for so many months, and we do our best to stay on top of his illness so we can learn more about how it is affecting him.

Little man had a follow up with his pediatrician yesterday (he now weighs in at 20#12oz!!!). The major Children's Hospitals (Mt.Sinai, CHOP, Jewish National) utilize a team approach for following these kiddo's and I am trying to duplicate that here- it makes perfect sense. Pediatrician's are at the center of their care, as they help manage the care of the "team" when so many things come into play- Allergist recommendations, GI work ups, Dietitian follow-ups. It all has to be monitored closely to be sure he stays thriving. I know this is where it would help to be at a place like CHOP (where our Allergist is) but we don't live in or near PA, so we are trying to make the best of what we have here. And what we have here, practically in our backyard, is one of the top leading medical facilities in the country- in the world! The doctors that want to learn about FPIES have been great, and they are really trying to help. Our pediatrician is great, and has been through all of this....but I still feel a disconnect between understanding FPIES and helping Little Man. I wish I could figure out how to get this better connected. The many days, months, and now going on a year of Little man being ill and monitoring and connecting his symptoms, and finding a diagnosis to explain it all, and managing his care, on top of him continuing to be sick, and on top of the other everyday things in life- our other children and their needs, our jobs, our home, all starting to get overwhelming when I also still feel I need to teach everyone about FPIES while trying to connect how it affects Little Man...most especially when he is as ill as he was before being hospitalized. We are trying so hard to find his baseline so we can build his tiny menu. It will be more difficult to do food trials when he is still having blood in stools and waking up screaming at night.

Monday, July 26, 2010


I believe I've said this before....but it always warrents repeating! Thank goodness for the Dietitian's in Sam's care!!! It was an RD who helped us get to the diagnosis, and today big thanks to our RD at CHOP and our inpatient hospital RD at Mayo.

We struggled finding a baseline for Little Man, we visited with our Allergist at CHOP who suggested his intolerances could suggest a corn intolerance and trace corn proteins in the Neocate formula could be preventing the inflammatory process in his body from calming down enough to find him a baseline to build from. We trialed corn and sure enough, after just 1tsp, failed it, we pushed it another 1/2tsp to be absolutly sure what we were seeing was a true FPIES response and we got our answer. The true beast of this syndrome is that you have to feed the child the food that he could react so violently to to know if he is intolerant or is a terrible thing to watch, I can only imagine what a terrible thing to experience. Little man let us know what a terrible thing by restricting his intakes of the formula, to less than half his needs for over a week...he got so weak, so fragile. We then started him on Hemp milk, putting it half/half in his Neocate bottles and he began to rapidly improve. We started to move further away from Neocate and it's trace corn proteins to more and more hemp milk - he was doing beautifully. We were planning on building up the hemp milk to equal the nutrition in his forumla; while we moved away from the Neocate- adding the nutrients we felt he needed in addition to the Neocate, starting with the starch. The addition of the starch coincided with the first blood in stools we have seen in 13mo. We stopped starch and gave his body a 3day rest, and then restarted; only to have everything come sweeping back- with full force of the worst watery explosive stools I have ever seen! This drained little man so much, so we tried other starches- with no better effects. Now little man isn't trusting his milk again and limits his Hemp milk to less than 1/2 of what he has been taking- going down to the same mere 400 calories he did with the Neocate after corn fail, only with the hemp milk (that is low on carbohydrate) - not getting adequate calories meant he wouldn't get enough glucose for his body to feed his brain....which is the state he entered in to on the weekend before his hospitalization. We knew he was sick, we just didn't know how to get the right help for him. We also knew we had an appt with his pediatrician right away that Monday morning; and knew she could help.

That was one week ago. Where did the week go. I find myself wondering if the doctors here knew about FPIES and what they were really seeing in Little Man upon admission was not malnutrition but failure to thrive from the foods we give him.....would we be ahead of where we are at today?

The focus is on his nutrition. A growing baby needs nutrition first and foremost for brain growth. Little Man's body knew this, and knew what to do to give it to him....burn his own stores to make glucose for his brain- it is a state called acidosis. Little man's body was starting to go into acidosis because his stores were so low....from being so sick since corn fail; and not from a diet of hemp milk.

Which brings us to today, where everyone can hopefully start to catch up. Dr.P at CHOP has given us some great advice...."the parents know the child". If the parents are worried about the child, then there is something to be worried about...."listen to the parents". Dr.P has been calling us daily to check in because we are worried about our little man, so he knows to be worried too.

Today brings us new doctors, new perspective, new approach....the Mayo way- a team of doctors to look at things from every angle; not only to give best care but to make sure nothing is being missed or overlooked.

Our good news today? Our dietitian from CHOP was able to give our dietitian here the resources to show that Hemp milk is a nutritious milk alternative (not to be confused with a formula alternative); but a good base on which to build a good diet for an FPIES child with intolerances to dairy, soy, rice, and corn. Confirmation that I was in fact not malnourishing my child, his FPIES was.....

Sunday, July 25, 2010

So quiet....

at home. Hubby takes the night shift with little man. After many months of having a sick child, while still caring for our other 3 boys; we have become a well-oiled (although admittedly sometimes squeaky) machine. And right now, I take the day shift with little man at the hospital so I can be there to talk with the doctors; and he takes the night shift so he can be there for Little Man. This allows all our boys to get time with each of us as well. Cuddle time, bedtime stories and bedtime prayers with mom right before bed are critical for the 3 big brothers. Playtime and cuddle time with daddy before bed are essential for little man. But we miss Little Man at home. He is anxious to get home too...hopefully tomorrow afternoon...

Little man has not had good weight gain yet. I already could have told you he wasn't going to. He drinks in adequate calories but his body isn't absorbing them all because of his gut inflammation, so this will continue to be a cyclic affect until we can rid his body of the inflammation. He started to have a rash on his back today- just another sign of the inflammatory triggers in his body. He also looks more pale today.

Our allergist at CHOP has been calling to check on him, this makes us feel very supported and is helping with a lot of the questions we/the doctors here have about FPIES. We have learned so much on this journey so far, I continue to look to learn more- not only to help our son (who still needs so much help right now) but to help learn and raise awareness of this roller coaster ride.

Saturday, July 24, 2010

Threshold of tolerance...

Trace proteins in breastmilk were an issue from birth for little man, after introduction of formula, it became a lower threshold that I could eat before I saw symptoms in him (through my breastmilk). After introductions of solids, he began reacting to more through my breastmilk (looking back).

Little man does not tolerate trace proteins of dairy (without any doubts). He has also reacted to soy and rice. But the threshold appears to be higher for these as it was a month of supplemental soy bottles before we decided he had a soy intolerance. We still aren't sure about FPIES to soy but clearly was intolerant to it and at this point is too sick to trial it. Corn looks to be very similiar to dairy- reacting to trace proteins. Neocate has trace corn proteins, however it does appear to be the most broken down of the elementals(best strained if you will) corn proteins from the corn syrup solids.

We trialed corn. After corn fail, we saw less tolerance of his formula...and it was as if he can tell his body can't tolerate it because he started to self limit his intakes to less than We moved to Hemp milk- doing a 50/50 mix and as we gradually moved further away from Neocate and more hemp- we saw these symptoms decline (only to come back full force if we move back up).

We asked our allergist at CHOP what he thought and he agrees it makes perfect sense. Finding that threshold can be tricky. We are going to attempt to find it. We have added back in 20oz of Neocate to his hemp milk. Upon adding it back in, he has had mouth itching, mottling of the skin, abd.;pain, reflux and pain from that, fussiness, burpy, and much disturbed sleep, and also mucous in his almost-too- formed-for-liquid-diet-diaper These have all been signs in the past of intolerance and all signs that decreased or went away competly as we lessened the Neocate. The doctors here at the hospital (who most are not currently recognizing his FPIES) want us to go to 100% Neocate and then see if he has intolerances. We are not here to make him sick and will not be doing this.

We had a long care conference yesterday to try and get our outpatient "team" and the inpatient team on the same page. It was intense and I really don't know if it made any difference. Our allergist at CHOP has been calling Sam's doctors and us daily to check in (despite being on vacation last week)-he has been a GREAT help and advocate for Sam. We will just have to see what the next days bring here, and then continue on with our regular "team" with finding Sam's baseline.


The last week has been a whirlwind. Little man was admitted to the hospital on Tuesday morning.

The effects from the starch intolerance led him to drink only half of his hemp milk, which was already low in nutrients (mainly carbohydrate source). He was just so sick, we knew it- we just didn't know what to do about it. We trust in our team we have put together for Samuel- his pediatrician, dietitian, allergist, and GI doctor; we brought him in for appts right away Monday morning. I knew he had lost weight, getting a weight at the pediatrician's office confirmed this- now down almost 8oz. since corn fail. He has had lots of periods of no gains, but this is the largest loss he has had. His little body has been struggling so much to catch back up since corn fail.

His pediatrician helped get him a last minute appt with his GI who agreed he needed to be admitted to the hospital to work on his nutrition as well as try and schedule a endoscopy for further evulation of his continued intolerances. She gave us instructions to come to the hospital for admission right away on Tuesday morning. I was still a little concerned to get to Tuesday morning. That night, little man's daddy slept with him, so he could be close in case something should happen...he was so lethargic. He was not dehydrated because he was drinking enough of his hemp milk to stay hydrated. Little man has always been so strong and so resilent through all of this, it was so hard to see him like this- so very, very weak.

Tuesday morning we were admitted to the hospital and the doctors began their assessments. He was given an IV and blood tests were taken to assess his current state. His blood sugar was very low (in the 40s)!! We were of course concerned, but not surprised as this would explain his weak/floppy that was getting worse with each day. His body had was going into acidosis, which meant that he was burning muscle to make glucose to feed his brain- not good. Little man was so, so sick; we were glad to finally be in a place to get him help. IV's were started and his blood sugar picked right back up to an acceptable level (90s); he began to perk up as well. He continued to eat just plain Hemp milk until he was made NPO in preparation for his procedure the next day. The GI doctors wanted to do his upper endscopy and lower sigmoidoscopy right away, so this was scheduled for Wednesday mid-morning. Little man was given a bowel prep of Miralax....only it didn't work. He was in SO much pain most of the night (only getting barely 3hrs of sleep all night long). We finally had to give him an enema to "clear him out", which worked nicely (finally). The procedure went well and multiple biopsy's were taken to help further evaluate Little Man's continued intolerances.

We kept him on hemp milk for the rest of that day, which he drank like a champ. It was then discussed and decided the next morning to re-introduce the Neocate to assure his brain gets the nutrition it needs (avoiding the low blood sugar). This is where it is very helpful to have kept logs on Little man's eating and symptoms. We had started to see significant improvements in little man when we had started to move away from Neocate. We seem to have found a thresh hold were we saw little symptoms when he kept his Neocate intake to less than 20oz./day. I had noticed that when he had 24oz., he would have random throwing up and discomfort. So, we decided this would be a safe place to go back to to get him thriving again. This was started on Thursday afternoon. He has been drinking it well and doing primarily well on it.

Test results are coming back in, biopsy's have revealed that his intestinal inflammation is not changed, and may be worse, than it was on last scope 5mo. ago- this after 7mo.on elemental nutrition. It doesn't make sense, unless you consider that he has been reacting to the trace proteins in Neocate as we suspect. The GI doctors agree that it doesn't make sense, but we differ on the why. They ordered more tests to be done, testing for an auto-immune enteritis. Good news is if they find this, it can be treated with steroids to get the inflammation to finally subside and we can begin to introduce foods. The bad news, this is an auto-immune disorder - from infancy.

This is the course of FPIES, ruling out other possibility's while you treat the intolerances. It is a difficult road.

Little Man will stay in the hospital for the weekend, and Monday will bring more decisions and next steps to take.

As for the rest of the family- we are holding on. The 3 older boys are doing well, they understand that their little brother is sick and needs the extra care right now. We try to keep their routine as "normal" as we can so one of us stays home with them while one of us is at the hosptial; with the exception of when we have help to come stay with us. This week, that came in the form of my sister. The boys always enjoy visits from their Aunt, she knows their routine and their needs and that gives them much comfort and stability in an unknown circumstances.

We remain thankful for the continued support from family and gives us much comfort to have prayers for Sam's health and our strength for endurance being sent our way. We have a deep Faith that allows us to put our worries in God's hands.

Sunday, July 18, 2010

Between a rock and a hard place...

When you can't go backwards and you're stuck with how to move forward....where do you go?

I know Little Man will outgrow this one day, my goal has been to get him thriving in the meantime. I don't want to just 'get by' and "survive" the next 1-3yrs...if he were pain free and not throwing up every few days and maybe able to tolerate even just 1-3foods; it would be a consideration. But the trace proteins of corn in the Neocate were keeping him from this - his gut remained inflammed and continued assualt and this would keep him from tolerating any foods and is likely the culprit of this possible carbohydrate maldigestion issue.

So, the choices are:

1. Stay on (go back to) Neocate and have continued gut assualt but know that his brain is fed. No foods for the next 1-2yrs, along with continued throwing up, continued mucous stools, continued pain with ingestion of anything, and off and on again agitation/fussiness/colic- whatever you call it- clearly uncomfortable. Risk continued food fails (because of gut inflammation and unknown consequences of that) and him being sick over and over again- and then not even wanting his Neocate. Also, this isn't just about him- I have 3 other boys who this is affecting daily as well, if we have a choice to get better than can we not take it?

So, brings us to, choice

2. Hemp milk and build him a formula...risk him being sick while we tease out which ingredients he can tolerate as fortifiers. Risk him losing weight while we look for ways to fortify his formula. Move away from FPIES triggers and gut inflammation and be able to see more cleary where all his almost daily pain for the past 9+mo is coming from.

Right now, we're stuck- he does not tolerate the carbohydrates we are adding to his formula....I have to choose between giving him unbearable gas, and runny stools to give him a carbohydrate or give him plain Hemp milk and have him hungry, but pain free, from no carbohydrate.

He is so tired today, but I do not feel it is only from the plain Hemp milk only diet- I feel it is from the tapioca, sugar, and potato causing so much distress that is exhausting him because he can't sleep through it, also the watery diarrhea from the maldigested carbohydrate causing some dehydration. I hope he pops out of it soon. I hope GI agrees to see him SOON. We are in need of GI doctors input for further guidance. I could go it alone and guess, but I'd rather have some medical input...

I amtempted to go back to tapioca starch and give him enzymes....might be worth a try - I don't know. Also thinking of getting a meat trial underway. Will need grass-fed (no soy, no corn) beef, lamb or pork.

Friday, July 16, 2010

If we have more pieces, will this puzzle finally come altogether?

After stopping tapioca starch over the weekend and restarting it on Monday with a swooping repeat of last week (agitation, GI distress and blood in watery stools), we stopped the tapioca starch yesterday morning. Little man got plain Hemp milk all day yesterday. We tried to just put a little cane sugar in his hemp milk to see if that helps to keep his blood sugar stable enough so he isn't so ravanously hungry and over eating (like he did on Monday- ate 83oz of hemp milk that day!!). I have questioned his tolerance of the cane sugar, but it was something to try so Little Man's daddy wanted to give it a try. He gave him some sprinkled on the table for him to play with (large granules) and sprinkled it on the hemp popsicles we make for him- he licked it a little. We also tried to put it into 2 bottles last night- of which he would drink an ounce and then not want anymore; only to give him a plain hemp milk bottle 15min later and have him suck down 6oz.

Well, we put him to bed (happy baby all day) and he woke up SCREAMING mulitple times (too many too remember) last night!!! He was SOOOO agitated...well, now we have little doubts of how he does with cane sugar as well.

So, moving on- I went and got potato starch today and started that in his bottles, he drank them ok as long as I kept it low....well, it was a good thing I kept it low because the same thing that happened with tapioca starch and sugar was happening all afternoon with potato starch.

It would seem to me, at this point, we have enough signs to point us that this is a carbohydrate maldigestion/intolerance issue compounding his FPIES. Hopefully we'll know more soon as I hope we can utilize these carbohydrate trials to help further solve our Little Man puzzle and be one more step closer to finally getting him healthier and thriving, and getting real food trials going. Hopefully....

Wednesday, July 14, 2010

More sliding...

Little man has been sick for a week now. We've lived in this place before - all the crying, stomach aches and pain, sleepless nights, wondering what is wrong, what to do to stop it, or fix it...

He isn't throwing up, so for that I am extremely grateful. It also is a good indication that what he is enduring isn't FPIES reactions.

His diapers are another story. Since corn fail, we continued to give him Neocate- with trace corn proteins. His body was reacting to the trace corn proteins already and after we pushed the limits with a true food trial of whole corn; his body now recognizes corn as an offender- and launches the attack at even trace recognition of the proteins. We continued to give him Neocate following corn fail because he was just too sick to test out a new "formula" or milk. The mucous in his stools was daily, the throwing up kept up sporadically (despite no crumb ingestions or other food exposures). We were moving him slowly to only Hemp milk...until the mucous in his stool turned to blood. We stopped Neocate right away and went straight to Hemp milk and building a formula out of that.

His bloody stools were accompanied by unexplained low-grade fevers and lots of fussiness but we didn't see any more blood....until yesterday. Blood throughout his diaper, in streaks and clots, and the pain cries have been intense, until the diaper today with a very large blood clot- he's been feeling better since then so hopeful this was the "end"....and maybe just his body cleaning out.

I can hope, I am optimistic. We were getting to see such good progress before last week, if only we could get back there and stay there for awhile.

Monday, July 12, 2010


Our rollar coaster ride has hit a mudslide....the blood in his stool, then not eating well, then starting to refuse to eat, then a viral illness, everything started to look fuzzy through the haze of mud.....

Little man continues to run unexplained fevers and generally just feeling lousy- lots of crying like he hasn't done in a long looks to be "just" some virus that he is 5 of fevers today. So, we just have to keep a close eye on him.

He drank 70+oz of hemp milk today!!!!! But he was hungry all day....unfortunatly the hemp milk does not have enough carbohydrate and he does ok for a day or two but then it just caves on him and he needs the carb. I tried a few times adding the tapioca and cane sugar mix but he was refusing it, and gagging on it- and I can not have him associating this new formula with anything negative.

So tonight,after a very busy day, I started really trying to pinpoint where this mudslide started (other than the blood in stool from the neocate)- but that is where everything started to spiral and unfortunatly making it look like it was all connected. After much thought on it and careful review of my logs; I think it is the cane sugar he is not liking. He's reacted to things with sugar before, so maybe he has an aversion to sugar (or something more). Still not sure but for this instance, it seems that when I started experimenting with small amounts of adding cane sugar, things started to slide down this mudslide; that combined with his body fatigue from Neocate exposure after corn fail, and this virus- all just got to be too much for his tired little body.

I have added the plain tapioca starch back in this evening and he was almost immediatly a happier boy; so hopefully this works and I will stay away from the cane sugar for now -- will just have to figure out another way to get more carbs in him. His allergist at CHOP keeps suggesting a barley trial, but I am SOOO leary of grains right now!- I'm SO leary of ANYTHING that will have a chance of making him sick!!

But we do have to come up with some foods we think he will "pass" and be "safe" foods to expand his diet. I'm thinking potato is the better option for next trial- it is not a grain but it is a starch and would give him the carbs he needs, and so much more! Also, looking at Arrowroot starch. Need to get him healthier first though....

I keep searching for that little barometer that tells us that he is ready for a food trial, that his illness is or isn't related to food intolerance, or when a food is going towards an FPIES reaction.....still can't find it!!

Thursday, July 8, 2010

Many faces of Little Man

The many faces of Little Man....having more good days than bad lately. He learned how to High Five this week- he even says it!! He loves to make all sorts of animal sounds. Loves to play peek-a-boo and clap his hands. He gives the best hugs and kisses. He is such a loveable little guy!
Despite having blood in his diaper yesterday he had a good day, he has not had any today but has had very loose stools all day...and he clearly isn't feeling good and now the detective game begins again....what is causing all this? The Neocate? The new changes with formula? A viral illness?
I called our Allergist right away this morning, he confirmed my thought process that the trace proteins in the Neocate are continuing to assualt his intestines and now has moved to causing colitis. He urged that we stop Neocate immediatly. We notified our Dietitian of our new curve ball and she worked all afternoon on finalizing his specific new formula- Hemp base, carbohydrate sources, complete amino acid source, vitamins and minerals and a little extra kitchen looks more like a science lab! But I am SOO excited at the possibility of continuing to see his true personality shine ALL day instead of just a few hours here and there, or not at all because it is buried underneath all the pain. Today has not gone as well for him, I suppose he just feels lousy (Allergist said he might -- encouraged me to give him lots of pedialyte today...well, unfortunatly Pedialyte is all corn derived as well). He seems to be running a low grade fever this afternoon, so trying to keep an eye on that. He just couldn't settle down for a nap although clearly tired. I gave him some of his compounded ibuprofen and that helped A LOT -- which is great but also confirms to me that he is in pain. The ibuprofen wore off before it was time to give him more, I tried everything and he was not happy - so finally gave him more ibuprofen and he finally gave in to sleep.
I do not like not knowing what is wrong, or worse- how to stop it or help simply breaks my heart. Hopefully he will get good rest tonight and feel better in the morning.

Wednesday, July 7, 2010


The next step in building a formula for our little man is adding a carbohydrate source. We will then get a good amino acid protein profile added and FINALLY move away from Neocate and it's trace corn proteins.

Those trace proteins may be causing a new problem, for the first time tonight- his diaper had blood in it. :( Many experience blood in stools with allergic reactions, we saw it at 8weeks with our oldest son when he was reacting to milk proteins. It is called allergic colitis, it isn't necessarily a component of FPIES but many kids have it also. We have not, until now.

Tonight, I'm stumped- why now? Where is it coming from and should we be worried? How worried should we be? Little man has hyperplasia in his colon and the GI that performed his scope said it is common to see mucous and blood from the sloughing off of this from food intolerances. We felt lucky that despite seeing this in his gut, little man had not experienced the colitis.

And today was going well-- we are making little man a formula he can thrive on!!! We have an awesome dietitian who will help assure that he gets all his micro and macro nutrients, calories, protein, fats, carbohydrates. I spoke with our allergist's RN today and got good compliments on how we are handling things and moving forward.

Thankfully little man isn't having any GI distress -- so I am not inclined to think this is leading to an FPIES trigger reaction but I'm certainly not encouraged by this new appearance in his evening diaper change.

We press on....more on the FPIES rollar coaster ride!

Monday, July 5, 2010

Steps to finding a baseline...

Little man has been on Hemp milk for 5 full days now. We tried giving it to him straight but he wasn't taking it well enough so, as Dr.P at CHOP recommended, we mixed it half and half with Neocate for now (until we can get fortifiers to mix in). He started drinking it like a champ! The first full day, he drank 41oz!!!

We wanted to move away from Neocate so we were trying to mix it 3/4 Hemp and 1/4 Neocate and I think it wasn't enough calories/volume/carbs because he wasn't sleeping well but otherwise had no other symptoms, except of course runny stools (not concerning on a liquid diet, as long as there isn't mucous). So, until we can fortify it, we have went back to 1/2 Neocate and 1/2 Hemp and he is doing really well with that ratio as far as his tummy and hunger and sleep. The mucous was decreased with the less Neocate but now with the increase back to 1/2 and 1/2- it is back. So, I have reassurances that once we get the fortifiers in the Hemp and away from the Neocate that our little man will FINALLY HEAL!!

We haven't had an accidental crumb exposures in a week....because he isn't as hungry so he isn't scrounging for food. He controlled his own intakes of Neocate and we knew it wasn't enough but he simply would not take any more. Now, with the hemp he takes 40-50oz./day (Neocate it was most). Also, being able to sit him at the table when his brothers eat and give him his Hemp milk popsicles has been so fun for him! He ate 2 for lunch today!!

We are really hoping Hemp is a true it really does appear to be helping at this point. I know the little man is in there, under all the pain....even though he went "hiding" at 3mo old- a mommy knows....

Just seeing the little boy we are seeing the past few days is exciting at the possibilities of how things will be in the upcoming months when we can start to get some foods in him. I think we'll hang out with no foods for awhile...not sure how long though -- at least 2-3weeks and anything past that I will let him guide us (as he always has).

We meet with the Dietitian tomorrow morning. Hopefully it won't take long to get the fortifiers that we need and we can get him off Neocate completly and get this little boy thriving and growing again!!

Saturday, July 3, 2010

Ahhh, the sweet smell of Hemp.....

On Little Man's breath from his new diet of hemp milk!

Little man has been on Hemp for 2 full days now, and he is doing very well with it. His body does not appear to be rejecting it...although I am still undecided if I should be excited! Cautiously optimistic (I am afterall an optimistic kind of person).

We have had to mix it with Neocate a little- it is just too "empty" for him to thrive on, and he wasn't drinking a ton of it the first day. So we mix it 4oz. Hemp and 2oz. Neocate and he sucks down all 6oz. (he previously would only drink 4oz. of Neocate at a time-we've been trying for MONTHS to get him to take more!). He took 41oz. of Hemp/Neocate yesterday!!!!!!! He previously would only take ~28oz(at most) of Neocate a day (many days since reaction only 20oz).

Good signs: he is a HAPPY boy- so that is good (and we are THANKFUL). His runny stools are less, his diaper rash is gone, he doesn't seem to be in ANY pain, his skin is good (no eczema), he's taking more than some thought his stomach could even handle.
Things that make me worry: last night he was up every hour and a half- probably mostly due to hunger as he didn't seem like he was in pain (I even gave him some ibuprofen and it didn't change anything), also possibly refluxing a little. BUT, maybe it is a good thing?? Maybe his GI tract is finally starting to heal and he is actually hungry and wanting the food -- he reaches for the bottle, drinks it anywhere and everywhere now (he had been refusing a lot since reaction, having to "trick" him into taking just the bare minimum of calories for him to thrive on).

I suppose this is how each new "food" is going to go- we just sit and wait and hope these little signs are not a build up to reaction....

Daddy made him Hemp Popsicles yesterday and he got to enjoy one while his brothers ate their lunch!! He LOVED it!! And whew- no oral aversions with him, yet....hopefully now we can get his gut healed and get his body to accept some "safe" foods without pain or vomiting and he can continue to move forward!

Friday, July 2, 2010

A word on Empathy....

Never underestimate the power of empathy. We are fortunate to have lots of support along this new journey. The prayers from family and friends have been immeasurable.

I have learned a lot while traveling down this path -- about myself, my inner strength (and weaknesses), about the love and support of family, the strength of prayer (from everywhere), the unfaltering support of friends, and the power of empathatic words.....

I came across this article on a webpage about reflux babies and feel it was well written. It is written by a social worker: “Where to start, what to say and how to respond when talking with loved ones about Infant Reflux” by Mary Kaufman, LCSW September 2006 (Adapted, and paraphrasing in my own words addressing little ones with multiple food intolerances)

It is human nature to want to make people feel better when they are distressed, typically our first response is to tell them that “everything will be okay”. Perhaps you’ve been the person who’s said this to someone and you’ve felt it was appropriate. However, perhaps you’ve also been on the receiving end of this comment and you felt insulted, confused or dismissed. Why is it that the things we think will help the most often put more distance between us and the person we’re trying to console?

This writing will suggest some alternate ways to show our concern, along with ways to deal with unhelpful comments (when you’re the one who needs empathy).
1. “Well, at least s/he’ll grow out of it”.

** If you’ve ever said this to someone, think about it this way: You probably know what it’s like to have a stomach ache/cramps, nausea, gas, diarrhea or heartburn, a stomach bug or food poisoning. It’s distressing and you probably reach for the nearest medication and swear to yourself that you’ll never eat whatever food you think caused it again. Now, imagine that you’re a baby and that the distress lasts day in and day out. Now, imagine being the parent of that baby—who listens to screaming day and night, who doesn’t have anything to stop the distress, who doesn’t have an article of clothing or a piece of furniture that hasn’t been spattered with vomit, who stays up half the night trying to console a screaming baby, who attends countless appointments with specialists, maintains a rigorous schedule and keeps a detailed log of feeding intake, BMs, etc. As that parent, when you hear “S/he’ll outgrow it”, you’re hearing that this is just some phase that your child will outgrow. You’re NOT hearing empathy for just how hard things are NOW. Sure, we can all look to the future and imagine how different things might be; however, in the present reality, things are pretty tough and it would be nice to have that acknowledged.

**If you’ve ever said this to someone, a better choice might be, “I’ve heard that kids can outgrow this, but it must be miserable when they’re going through this.” Or “Does your doctor have any idea what’s causing this or if there’s any way to make him/her more comfortable?”

**If someone says this to you: An easy comeback is to say, “Yes, and that will be great. However, right now, it’s pretty difficult to deal with.”

2. “But s/he looks healthy to me”. Unfortunately, many people with terrible illnesses also look healthy. We would never question a cancer patient’s diagnosis because s/he “looks so good”. While food intolerances is not the same as cancer, very serious damage can be done to the GI tract if left untreated—no matter how healthy or happy a baby looks.

**If you’ve ever said this to someone: You might consider saying something like, “You must be working very hard to keep him/her so healthy despite all of his/her issues” or “What a beautiful baby—I am so sorry s/he is suffering like this”.

**If someone has said this to you: A good comeback is to say, “S/he really is gorgeous; however, the intolerances are really causing damage to his/her GI tract and ability to eat”.

3. “My baby/toddler was a picky eater, too” or “S/he’ll eat when s/he wants to”.

Unfortunately, many babies will develop oral/food aversions because it is so painful to eat and digest. The difference between picky eating and food aversions is that picky eaters simply don’t eat foods they don’t like; however, they will happily snack on things they like (Chocolate cake, cookies, milk, etc.). A child with a food aversion will literally half starve him/herself to avoid the pain of eating. Children will go days without taking formula or food and often end up losing weight and/or being admitted to the hospital for dehydration.

**If you’ve ever said this to someone: You might consider saying something like, “I can’t imagine being in so much pain that I wouldn’t want to eat. This must be so hard to watch.” Or “I never knew a baby would do this—what is your doctor doing to help?” This lets a parent know that, even though you might not fully understand WHY, you are still being empathetic. It also acknowledges that there is a problem and doesn’t make the parent feel as if they have to defend the diagnosis.
**If someone has said this to you: A good response is to say, “S/he is being followed by a _________specialist who has confirmed that this is a very serious issue. It’s different from just being picky—it’s called an aversion and many children with multiple food intolerances develop this”.

4. “…Sounds like a made-up diagnosis” or “Babies didn’t have this in my day”. Just like other diseases (cancer, etc.), medical science is much more sophisticated at being able to diagnose problems that might have been missed in past generations. When the parent hears this, it can further make them feel alienated or might make them feel as if their baby’s problems are “all in their head”. Parents need reassurance when their child is sick, even if people don’t truly understand what’s going on. When a parent hears this type of statement, it really sounds as if the speaker is telling him/her that they don’t believe the diagnosis exists or is accurate. This can quickly put a person on the defensive.
**If you’ve ever said this to someone, you might consider saying something like, “Wow, it’s amazing that doctors are able to diagnose things like this now” or “I’ve honestly never heard of this before—tell me more about it.”

**If someone has said this to you, a good response might be to say, “It’s a blessing that medical science is now able to pinpoint what’s going on. Otherwise, we wouldn’t know why s/he’s suffering.” Or “It’s always existed; however, doctors didn’t know what was happening and often mislabeled this type of problem as ‘colic’. I’m so glad they’re able to diagnose these things now so that we can help our baby.”
Points to remember: As stated before, it is human nature to want to make those around us feel better when they’re hurting. The problem is that we don’t often quite know how.

Here are a few things to remember when talking to these parents:

1. Minimizing the problem won’t help anyone. Instead of trying to make people “look on the bright side” or making statements like “This will all blow over soon”, try simply saying something like, “This must be so hard for you”. Sometimes there’s nothing more comforting to someone in need than hearing that another person empathizes with their suffering. Making light of someone else’s misery just puts them on the defensive and makes them feel more isolated.

2. Don’t be afraid to ask questions, and ask BEFORE doing research for a parent. Most parents welcome questions and don’t mind explaining their child’s diagnosis and treatment plan. Since children can present with different symptoms, suffer from different complications and often receive different treatments, it’s much better to talk to the parent(s) to find out what’s going on than to research on your own and come back with advice/information that might not be helpful.

3. Even if you were a perfect parent, try to refrain from assuming that you can make a child eat/cure his reflux/get him to sleep through the night. It is so frustrating and depressing to have a baby who doesn’t do any of the things that other “normal” babies do. Parents of kids with multiple food intolerances will deal with gallons of puke, tons of laundry, babies who awaken all through the night for months longer than “normal” babies, babies and toddlers who would rather starve than eat, etc. it’s easy for a sleep-deprived parent to start to blame him/herself for the baby’s issues and hearing comments from a friend or loved one that insinuate the child would do much better under their care can be devastating for a parent. It’s hard not to want to jump in and take over, usually out of an intense desire to help. If you truly want to be helpful; acknowledge what they are going through and then offer your services to the parent(s)—ask if mom wants you to throw in a load of laundry, cook dinner or clean the bathrooms for her. See if mom or dad would like to take a nap while you watch the baby for awhile (just remember to follow their guidelines for eating/sleeping!). These things are so helpful to an overwhelmed parent and your willingness to empathize and pitch in will not go unnoticed!