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."

Tuesday, March 27, 2012


Recovery is going well, I am glad to say.   I can see that the virus he had right after surgery really was a set back.  Another one of his brothers ended up getting sick and thought for sure he had strep, he felt so poorly.  
Once Little man's body had fought off the virus, he was dramatically improved- didn't need pain meds, tolerating more feeds, and increasing appetite.  The increased appetite meant increased feeds, but the increased feeds showed he wasn't ready for them- now is this because of his surgery?   They did warn us that the surgery could flare reflux and other issues as the body heals and adjusts to the tube.  Maybe it's too much volume? The stress from the surgery and body recouping?  The inflammation shown on biopsy causing problems with digesting the high sugar (tapioca starch) in the formula?   

We don't know, what we do know is something isn't right.   Alimentum "feeds" are causing highs and lows and it doesn't make any sense when his blood sugars were more stable on just hemp milk alone.  The Hemp milk seems to keep things more stable, along with small frequent "meals".   So, we think about cutting back on his daytime feeds of Alimentum and trying the overnight feeds again....mixed with hemp milk.    While he was still in the hospital, the goal was for 4oz.feeds every 2hrs, and without taking into account that he was sick- the nurse woke him up every 2hrs. the last night he was hospitalized- so he was a wreck by morning!!  Crying and tantrums and irrational behavior.  We slowed down on feeds that morning and that helped, we have kept them slow since being at home- using him as our guide....he just hasn't been ready to be where he was at before surgery and we're still hoping it is simply from the surgery but can't help but be worried something more is going on. 

His biopsy results showed peptic-type duodentitis and reactive epithelium in the small intestines along with mild chronic inflammation in the stomach.      This was not there 4-5weeks before, prior to starting the Alimentum trial....what does this mean?   Could it have been caused by something other than the Alimentum RTF?  If it is was, it will improve; if it isn't- it will worsen.....   

But that brings us back to surgery recovery- expected reflux and not tolerating feeds, and even vomiting.   So, how do we know if things are getting better or worse?   

We thought we could be safer reducing the daytime feeds if we tried overnight feeds again.  He tolerates the Alimentum better with hemp milk so I mixed the Alimentum with the hemp and did an overnight feed on Saturday night.   He tolerated it well overnight, slept well!   He woke up and was doing well.  He ate a hemp milk bottle and had a feed of Alimentum at about 8am, and then played....we were completely blindsided by the vomit sessions later that morning!   

I'm hoping it was from the overnight feed- either being too much volume or because the hemp milk went bad overnight but the repeated and forceful nature of the vomit was telling us otherwise; the raw meat look (sorry for TMI) to his diaper the next day seemed to confirm the reaction- but to what?     The overfeed?   Did he get a hold of something?  He had had some bites of strawberry's but that was Thursday and Friday and didn't otherwise seem to bother him (strawberry's are not a confirmed safe food yet and we're not doing a trial but they aren't unsafe either as far as we know and I had gotten them at the store and he wanted one so we let him have one). 

Or is it the Alimentum?    We just don't know, each day seems to get progressive with symptoms of irritional behavior, disturbed sleep, reflux, crying and waking in his sleep, pale/pasty look, and some subtle rashes that keep waxing and waning. even though we've stayed at a mere 6oz/day of Alimentum (not anywhere near his 40-50oz needs!) but we are a little unsure of how to proceed....the thought of making him repeatedly sick while his body is trying to recover from surgery is just overwhelming so we feel treading water on his feeds is in his best interest right now.   

Monday, March 26, 2012

Corn Freedom

Before I update about how the Alimentum RTF trial went, I wanted to take the opportunity to speak a little more about a corn allergy- the reason why we've been without a formula for so long.   

Awareness needs to be raised for corn allergic individuals.   A corn allergy is a difficult one to live with.  A corn allergy is overwhelming when you first realize that is what is causing reactions to trigger.  I read everything I could in journal articles but quickly found there wasn't enough information or enough known about the extents of a corn allergy; although there are a few good ones that give you a starting off point.  I learned the most from other corn allergic people sharing their stories- things they learned, successes, fails, reactions, recipes....there are growing numbers of corn free forums/support groups of people sharing this information.  These forums at least give you a beginning place to start and were a life-saver for me to helping get little man to a baseline and stop the inflammation in his body.  

One site recently did a blog post on Corn Free Basics- a sort of survival tip for starting with a corn allergy on: Living it up Corn Free.   You can read through this quickly and think "this isn't so hard"- well, consider that most of the survival items, little man is allergic to soy/legumes, dairy, wheat, rice,....

So how does a child with multiple food allergies survive and thrive?  Formula becomes a life line.  Unfortunately not always so for a corn allergic child, formula is in a corn syrup base and for many corn allergic children, this poses a severe problem.   Thankfully this is not the case for all children.   Some corn allergic follow what the is coined "corn lite" and don't seem to have noticeable or health threatening reactions from  corn derived ingredients in trace or contamination amounts, including formula.   These unfortunate corn allergic individuals can fortunately tolerate corn lite ingredients without it causing more harm than good. I've also heard FPIES families that have little ones with problems with the corn-y ingredients but after gut rest can handle corn-y ingredients (corn-lite) but still can not do full corn ingredients. 

With a corn allergy, my personal "basics" surrounds being aware of all of the things that are corn derived and that could cause a reaction -- and then weighing how much that food is needed in the body with the risk of reaction and then deciding on if that benefit is worth the risk (of attempt to trial/introduce it).   For an infant/toddler with severe multiple food allergies on a limited/restricted diet, the formula benefit is worth the risk of a trial.   Trialing the formula is necessary, but that is not to be confused with living on a formula that a child is not thriving on.  Our little man fell into that category: 5mo. of elemental formula's with increasing symptoms, progressing inflammation, decreasing protein and iron stores from the malabsorption secondary to the inflammation, generalized low quality of life for a little guy that threw up almost daily and lived many hours of the day in pain. Then it becomes about choosing the best for your child's quality of life and disease state- if the formula is doing more harm than good, then a discussion with the doctors and dietitians is in order- to of course rule out other conditions being in conjunction with and complicating the FPIES but also to find a suitable replacement for the formula. Keeping in mind that the good the formula does is well past caloric nourishment, it is about nutrients nourishment, so that needs to be weighed when considering reactions, symptoms and trace/contamination trigger exposure from the formula. 

Another great and informative site is Corn Freedom, a mom of a corn allergic boy (not FPIES) that has a online support page. She has asked any and all corn allergic families to help her, help the corn allergic.  To get corn recognized as a top allergen, to have it labeled, to have doctors recognize what illnesses corn could be at the root of, to have help for these families/corn allergic.  To do this you can write to her with your story of corn allergies- when it started, what it's like, what it means to the allergic individual and what it means to the family, what it would mean to have corn listed as an allergen, what doctor diagnosed and follows, and anything else to share.    You can submit your/your child's story to her on her support page here 

I submitted our story: 
A corn allergy has afflicted my son.   My son is 2 1/2yrs.old and has Food Protein Induced Enterocolitis Syndrome (FPIES) and his allergies include corn, among other foods such as soy and dairy proteins.  His reactions consist of damage to his gastrointestinal system by inflammatory cells recognizing the corn as an allergen, his body reacts by violently expelling the allergen with profuse vomit until bile followed by diarrhea, this can cause severe dehydration and acidosis for him.   A reaction that isn’t this severe (from cross contamination or trace proteins) will bring on continued gut inflammation which results in ongoing pain for him.  His diet is very limited by his allergies and severely so because of his corn allergy and this country’s dependence on corn.   Because of his allergy, he has even reacted to elemental formula’s that severely allergic children typically thrive on.  These formula’s are not an option for my son because of the corn syrup base.  This affects his quality of life because as an infant, he needed reflux medications but the effects they had on his body landed him in the hospital for dehydration and failure to consume adequate nutrition.  He was taken off of breast milk and put on elemental formula’s- which he consumed as his only source of nutrition for the next 5months until we saw an allergist familiar enough with corn allergies to save his life and advise us that yes, with him reactions to medications (all OTC medications have some degree of corn ingredients) as well as his inability to tolerate an elemental formula – a corn allergy was typically at this root.  Over the next months, we removed all corn and our sick little boy began to heal.  We finally were in control of his allergies, by the recognition and acceptance of his corn allergy and a lot of mommy research- thanks to other families sharing their tools for how to thrive with a corn allergy, we were able to control his allergy.  Finding a nutritionally adequate diet without a formula was another challenge we are continually battling. Recognition of a corn allergy would save my son from having to undergo numerous and invasive tests and procedures, recognition of a corn allergy would raise awareness and appeal to formula companies that there are increasing numbers of infants who have to choose between controlling an allergy and avoiding daily pain and reactions/malabsorption or nourishing their child- what kind of a choice is that for a mother?   Allergists have a difficult time recognizing that formula can cause a problem for a corn allergic if they have not cared for a child with a corn allergy and this is further disillusioned because of the dependency of formula companies on corn syrup assuring them that “typically kids with corn allergies don’t react to our formulas”….when the lives of these infants tell a different tale.   Parents are left to manage this on their own, risking malnutrition in an infant because doctors can not help, and even turn their backs on these children….because of the poor recognition and awareness of corn allergy and how many things have corn and corn derived ingredients in them.    

Corn is a complicated and difficult allergy trigger to have. 

Tuesday, March 20, 2012

Emotional Exhaustion

...makes me so much more fatigued than physical exhaustion.    Seeing your child in pain, or hurting in any way is so emotionally exhausting.  Surgery was on Thursday.  Before Little man's surgery, his brother had fevers on Sunday/Monday and progressed into a cough.  We were concerned for him but also for Little man's surgery so took him in to be sure it was just a cough from a virus and the pediatrician we saw felt it was so we proceeded to his G tube surgery.   Looking back, I wish we would have postponed his surgery.   The NG tube and having to reinsert it was heavy on our minds, and knowing we needed to move to the G tube, and there would never be an "ideal" time for a surgery.    

Little Man so rarely gets sick, why now?  He started coughing right out of surgery but we thought it was due to the intubation from anesthesia but when he started having fevers, our concerns grew.   The surgeons/residents were in right away to evaluate things with a fever there is concern for an infection but noted that it was early to see an infection be setting in.   All I could think was, well- this is our Little Man....if it's unlikely to happen, it seems like it will cross his path.  

His fevers continued to persist, despite round the clock medication (compounded ibuprofen and acetaminophen) through Friday.  The Surgery Nurse Practitioner came to the room Friday afternoon to do some home-cares teaching of the site cares, and hooking up and changing the tubing and she was concerned that his cough sounded croupy.  He was then placed on strict isolation- meaning we had to stay in the room.   We could do "therapeutic" walks if he wore a mask (no doing) or had a blanket over his head.  We stayed in the room the rest of Friday- he was feeling so lousy anyway.  He had a chest xray, lab draw, and RSV culture while they continued to monitor his fevers.   He spiked one last fever on early Saturday morning and then he seemed to turn a corner. And, thankfully, spring has sprung early in Minnesota so on Saturday, we were able to put a blanket over his head, head down the hallway and take the elevators OUT- out into the wide open spaces of outdoors!  We walked and walked and walked (well, he mostly rode in the stroller).  I think he overdid it on Saturday a bit though as by Saturday evening he was feeling pretty lousy again, but no fevers so we continued to play for a dismissal (finally) for Sunday.  

All the tests came back negative for anything so we we set to go home on Sunday- thankfully we were able to do so!! This was getting to be a long stay and we were anxious to get home.   Now, I don't know why- I'm exhausted.  I have a lot to catch up on from being gone most of the week and there is of course still the other everyday activities of running a household but we are watching Little Man closely so that he doesn't do any activity that would comprimise his tube site healing.   I'm so nervous about something happening. 

What could happen?   It could fall out!  Ewww and agggh!   We have been prepared for the emergent situation if it should happen but we will pray it doesn't- and take every precaution necessary in the meantime. During the healing stage, if it falls out- it is an emergency, it will start to close up quickly.   Thankfully we are 2miles from the ER so we have been assured and reassured it will be ok, he will be ok, if we take the steps needed if it should fall out.  I hope we don't have to find out.  After the healing (4-6weeks), the risk is still high that it could fall out but it isn't as emergent, and we are taught how to put it back in ourselves (again, ewww and aggh and shiver, but...).   

Enough emotional exhaustion for you?  Well, his brother now has a double ear infection and barely slept on Saturday night- took him in on Sunday and got antibiotics and also discovered his cough is now a wheeze and was prescribed prednisone to clear it up.   Now, this morning Little man wakes up with a high fever, again!  

Off to the pediatrician we went, tube site was evaluated by surgery nurse practitioner while we were there and he was checked for anything viral- and swabbed for Influenza.  If they can find a source for the fever- even if it is "just" the flu, then we'll know what we should be watching for a little bit better.  If they can't find a source for the fevers, he'll have to be monitored closely because a site infection can happen quickly.  Thankfully, his influenza swab came back negative, so that is good news and bad news- the good news is obviously that he doesn't have the flu the bad news is that we still don't know what is causing the fevers.  Maybe we'll never know, likely we'll never know but we need to keep a close eye on him in case it is related to his surgical site. 

Oh, and an added concern- his site oozes a lot more than "normal"...there was concern that it was signs of infection because it was snotty yellow/greenish but the surgeon evaluated it before we left and felt it was "unfortunate" but not infection....unfortunate because it means diligent cleaning of the site and the constant oozing.  Great.   It doesn't hurt him to clean it but it is very sensitive and isn't an enjoyable feeling at all- he fights it a lot, and is upsetting.   It is causing him to resist some of his feeds as well - simply because he doesn't want us touching, inspecting, or cleaning his tubing.  

We know this is the best thing for him and we anticipated rough days with the healing but no matter how much you anticipate, it is still exhausting, emotionally exhausting.    

Thursday, March 15, 2012

Gastrostomy Tube (G-Tube)

Little man now has a G tube....

I'm not sure if it has fully sunk in yet as we are just concentrating on his recovery and healing for now and it's been a long day.   He was 2nd case so didn't get started until around 11am, and was done and back to his room a little after 1pm.   He woke up rough, as he usually does but calms down right away when he sees us.   The surgery earns him a bit more pain meds (IV), so those kept him sleepy for a few hours, which was helpful (for him and us).   Once he woke up- he was in pain and he knew exactly where it was coming from because he kept trying to touch his site.  We were able to get him some IV pain meds and that helped significantly.  After the pain meds, he slept off and on all afternoon- so I mostly snuggled with him.....he is being such a trooper! I wasn't sure how he was going to perceive his new appliance and so far, he's doing well with it; so I pray he continues to be ok with it.  

Our concerns are quickly shifted as he spiked a fever that evening (102, that quickly climbed to 103) - the surgery team came by and they didn't feel it is from his surgical site as they feel that would be fast for an infection to set in and he's not showing any signs of extra swelling or sensitivity around the site.   They said that some people develop fevers from the body stress.   The other possibility is that it is a simple, but ill timed, virus.  His brother has had a cold, and was running a fever on Sunday/Monday so maybe he simply caught it?  

An endoscopy with biopsy's was also completed while he was out for surgery which the initial results showed no new damage in his intestines so now we anxiously await his biopsy results to tell us more about the state of his villi.   

We were surprised to see that he has had virtually no weight gain in the 4 weeks since dismissal.  We will see what the weight tomorrow says because maybe today's was just off from fasting.   All the nurses were commenting on how much taller he looks so maybe he just grew in length instead!? 

Tuesday, March 13, 2012

Getting rid of the NG Tube!

Well, after last week we are ready to get rid of the NG tube, even if that means the surgery for the Gtube!  Last week, the tube fell out (tape came lose and it slipped out in the night) and we had to go in to the Pediatrician's office to get it replaced, the placement went smoothly and he handled it well but the week was rough- lots of up and down patches for him while we tried to adjust his feeds and cater to his needs, and was that lotion he just licked off his hands?  Our worry was growing at what was going on with him.   Then, Thursday night his tube came out again (after a forceful vomit session) and we went to have it replaced at the Pediatric Infusion Therapy Center- GREAT nurses but they used a ton of lubricant.  I didn't pay any attention (too busy holding him down), that placement didn't go as smoothly but he did ok after it was over until later in the afternoon and his irrational behavior started- he got pretty intense and I was worried he was going to hurt himself or pull out his tube...either way, it was sliding out because of all the lubricant -- the tube that we spent all morning coordinating a schedule to get it replaced!! The tube we did not want to have to replace again...I took his blood sugar and it was low and he was REFUSING to eat (had refused ALL afternoon), I barely got a few ounces of "feed" in him but the blood sugar did not come back up.  Through all of this, his irrational behavior continued and the NG slipped right out.  Darn it!!   UGH!  He did calm down after it, and I couldn't understand why he was now so much easier to calm.  I kept replaying it all in my head- how are we gonna keep this NG in until surgery?  And then it just hit me- that lubricant!  Oh my gosh- it would be down his nose, into his throat and down his stomach!! He can't handle crap like that- assume corn ingredients but I don't know!  It must've been making his throat BURN!  He was so much calmer, and finally drank something after it came out.    When we went to have it replaced, we requested them to not use lubricant this time and he has gone back to being a champ with it.    The things you just don't think of....

The NG tube has enabled us to keep the Alimentum RTF going through his gut at a steady pace, ensuring him proper nutrition every day without a constant struggle but also ensuring that he is tolerating it- each day that passes we are more assured in that.   And the upcoming scope, which will be right at the 4week mark of Alimentum, will give us the final pieces we need to be sure his body has accepted this formula and then we can plan to begin next steps (continued gut rest while he heals and then food trials in a month or two, maybe?!) Now if he has a safe formula, we don't have to do trials to get nutrients in his body so we can take longer to do the trials, or shelve a food easier.   If it's not 100% safe, he doesn't need to have it in his diet.  If we keep running into those walls as he turns 3, we may have to look further into why his body is not accepting food but in the meantime, he can be 2.   He can be 2 1/2.  I read a little saying today- that I in fact have a die-cut for in my scrapbooking materials somewhere....

Two and a Half
Hold him a little longer, 
Rock him a little more
Tell him another story
(you've only told him four)
Let him sleep on your shoulder
Rejoice in his happy smile
He is only 2 1/2 for such a little while!  (author unknown)

The past few days have been pretty good for him....we are marveling in his personality that we get to see for more hours of the day- he giggles, and plays trains, and pretends to be a puppy, and is initiating pretend play with his brothers, his words are increasing, and his frustrations are decreasing.  He is such a little fighter- to go through as much as he has and to still wear that smile when he gets the chance.  

Surgery for the G tube is coming up....

Thursday, March 8, 2012


"Feeds" are what we call his tube feeding sessions.    Little man needs ~50oz of Alimentum RTF to get the dosage of nutrients he is missing in his hemp milk formula, particularly from Vit.C. and B vitamins.    We already know he can't quite tolerate 50oz. in a day, while still taking in hemp milk formula in his bottles.   But even to get in 40+oz., we are constantly doing "feeds".   

Typically a tube fed person would be on much less ounces because the formula concentration can be mixed higher....a powder formula can be mixed higher concentration and less volume.   There isn't anything we can do to increase the concentration of the Alimentum Ready to Feed.   It is just that- ready to feed, a liquid formula (not a powder).   It is designed for infants not toddlers on a restricted diet.  

Eventually, we hope to increase the concentration with foods; but that could be months and months away.  Right now we need to figure out how to give him what he needs without him being miserable from the dosage/volume....which we suspect is the biggest issue with his tolerance level right now- volume.  The overnight feeds were increasingly becoming a problem....some of it could have been exacerbated from the cross contamination exposure from the whistle but since it started before that- I am not sure how much. 

Then, the other day when his NG tube fell out - it had started to fall out in the night and the pump was not able to "feed" him and kept going off (LOUD beeps at 4am)- I got frustrated and just shut it off- resolved to make up the final 3hrs later in the day....he slept better the rest of the night!  

We have had trouble with the overnight feed since day one pretty much, he tosses and turns and has had nights where he is awake for a few hours, or wakes in pain, or just cries in his sleep.  We don't think he's tolerating the continuous drip feed.  But how else do we get this volume in him?! 

We decide to let him guide us, as we always take advantage of the times he is hungry (asking for a bottle)- he can drink 4oz. of his hemp milk formula while we "feed" him 5-6oz of the Alimentum RTF.  We are doing this 6-7x/day - so he essentially gets 6small meals (and still wants bottles in between!) - we're not making 50oz. but we are getting 36-42oz; so we feel good about that.  

He tolerates the volume of the feed/hemp (8-10oz) but not sure how well he's tolerating the "load" of it because something is still not quite right- he has episodes during the day where he just flips a switch and goes from playing perfectly nicely to unreasonable tantrums.  I know, he's 2 1/2- what am I expecting?   I don't know but I can't help but wonder how much of it is related to his digestion and how much is just him being 2yrs., so it is something we're watching closely and trying to recognize patterns and praying he doesn't build up any allergy to the Alimentum RTF.  We could use a break.  HE could use a break!! 

Tuesday, March 6, 2012

A Whistle & A Blessing?

Or at least that is what I hoped some setback/symptoms were from.  The other day, I picked up his brother from an after school class and he was jingling a whistle in his pocket.   Little man, of course heard it and asked for it.  I had woken him up from his nap to go pick the kids up from the bus and from the after school class so he was being a little edgy.  We succeeded in convincing him it was simply a bell, and let him play with it.  He doesn't know it's a whistle (I keep any toys that would be 'mouthed" out of our house because the cross contamination risk of one boy who had just eaten something that little man is allergic to is too high with a 2yr.old that doesn't understand why his brothers get to play with the toy and he doesn't).   So, he's happy thinking it's a bell.    

He is clutching it when we get home, a new toy he isn't ready to share (or give back to his brother).   But somehow one of his other brothers convinces him to show it to him and promptly shows him it is not a bell but a whistle!  Little man is TICKLED and excitedly comes to show me what his big brother taught him.  He is giggling and giggling- how can I stop him?  He's already sucked on it (before he came to show me), and he is having SO MUCH FUN with it- belly rolling giggling at his discovery!   I saw a little prayer and call his brother up to tell me what he ate before he used the whistle. Lunch...a dozen things could be living residue on this whistle.   We can only wait....

2 hours following the whistle blowing fun, he has a nasty diaper with mucus and green slime (mixed in with normal stool, so not a full diaper of slime), but the tell-tale smell of reaction permeates the house (and his brothers are sure to confirm'd think they'd be used to it by now but the "he has a really bad stinky" yelling while running through the house gagging apparently just never gets old.   

He has some trouble going to sleep that night and the next day he just isn't feeling good, noted by the whining, clinging and decreased appetite.   We had a busy morning with taking kids to school, to preschool, dietitian appointment, I'm hopeful it is just from the busy morning.   His afternoon improved; so I'm hopeful we've seen the end of it (whatever caused it).   This allergy is so bizarre- and he's had dozens of this type of cross contamination reaction - why do I still feel like I'm just seeing things?   

Over the next few days, he is still "off" and I notice he has a small eczema patch on his leg I will be watching (he NEVER gets eczema outside of a food trigger).    Now, I'm actually hoping it IS from the whistle (and not the Alimentum we've been questioning his tolerance of) because it brought on more trouble than I anticipated....with all the symptoms he had for a few days, I'm surprised he didn't vomit from it all.    

I'm still banking on all of his symptoms being from that, as they escalated and then seemed to peak and are now coming down, with a few lingering ones that are still making me concerned.   The night time waking is the biggest one right now.   He is awake in the middle of the night, wide awake or crying awake and it's been too many nights now to be coincidental.   I am hoping it was related to the whistle because it is otherwise related to his "feeds"- he is on a drip feed overnight to get 15-21oz. of formula that is too hard to give during the day without taking away his hemp milk bottles (and his own eating skill) away from him -- which would be going backwards so it is not something we want to do.  If his hemp milk were just water, that would be another discussion but his hemp milk is nutrition itself and it keeps him knowing that he needs to eat (even if it is drinking from a bottle) when he is hungry.   The tube feedings are to help him not be as hungry and provide missed nutrition, between his own "meals" (right now hemp milk formula, peaches and millet cookies) and provide is not meant to take away all his appetite and skill of eating, for him. 

We are at 3 weeks now on full Alimentum RTF with each day getting more assurances that he is not having any reactions from the dairy protein in it.   

With this weekend being a slip back into the "crisis" mode from his not feeling too well, a mode we have spent so much time in over the past 2yrs., that has so much focus and attention on Little Man and so much less than what we aspire to on the other boys, it is giving me some comfort in the decision of the feeding tube surgery.  If this gives him the break from food trials by providing the means to give him the formula that his body can thrive on, it will increase not only his quality of life but his brothers as well.  

A little message I needed, a blessing in disguise for my heart.... 

Monday, March 5, 2012

Processing...Formula, NG tubes, and G tubes- oh my!

This term is a term that I have used a lot on this journey.   A fellow FPIES mom used it in the support groups in response to someone's post about a full doctors appointment one day.   There is so much to learn with an unknown diagnosis like FPIES, and then add in to that that it will manifest itself differently in your child and that your doctors may not be as familiar as others, and the decisions that you need to make for your own child and their health, well being, safety and quality of life.   So there is a lot of processing.   

Processing research and medical journal articles, processing the symptoms in your child, processing the differences between "normal" baby/toddler characteristics and what may be a reaction/allergy symptom with this delayed allergy, processing recommendations, extra processing of recommendations from doctors not familiar with FPIES, processing next steps, processing what is best for your child within those recommendations, processing, processing,...

This weekend, I began truly processing the need for our Little Man to have a feeding tube, a G tube.  He has a type of feeding tube right now, an NG (nasogastric) tube, to feed him the Alimentum he refuses to drink.  It is an infant formula, and smells horrible.  He has always been picky about his formula since switching from other commercial formula's to Hemp milk formula I make for him.   He notices small changes in that formula, so it has been difficult to add anything to it, to even be able to "trial" new ingredients to add to it.    Add to that that we have searched high and low for ingredients to supplement to this formula that do not contain corn.   He was missing some B vitamins and Vit.C mainly, but also a handful or so of other micronutrients.   The biggest problem was not necessarily the other nutrients but finding a vitamin that did not use corn as it's source of Vit.C.   And then there was always the constant, why not give him a food with these nutrients vs. a supplement.   His corn trigger has made this extra challenging.   

And then this is where my processing gets thick...My head knows better, the dietetics part of my brain knows better- that if a feeding tube is what he needs to get proper nutrition for growth and development right now, then it is the best thing for him.  it isn't forever, and hopefully neither is his FPIES, but it is what he needs right now.   It will have other benefits for him and his FPIES specific needs as well, benefits that outweigh the risks.   

He will not only get the nutrients he lacks in his hemp milk formula, we could test and build his tolerance to foods via a formula through the tube...utilizing his Alimentum as a base and adding a teaspoon at a time of (pureed) foods to it to trial and potentially build his tolerance.  Once a food is found to be safe, we can safely introduce it into his diet....thus encouraging him to eat foods that we know will not later cause symptoms or vomiting, and also- not have to take away a food (this has been a challenge for him, and confusing to have foods one day and then lose that food the next).  As we add safe foods that he still won't eat, we will be able to add them to his Alimentum formula via the tube; and thus decrease the amount of Alimentum he needs (very high volumes right now to get him all the nutrients he needs since it is an infant formula).  There is also the "convenience" of assuring his nutrition needs will be met everyday (via the tube) in a child who does not have a healthy relationship with food.  The stress level this reduces for us as parents, and in our house and for him to just be a kid, without the extra focus on revolving everything around his caloric intakes for the day is a part of the considerations when you look at quality of life factors. 

So, what is there to struggle about?  What is holding these lingering feelings if this is the right choice for our little man?  Is it because it makes me feel like I've failed him by consenting to a surgery to put in a feeding tube? Or worried he won't tolerate the tube or surgery?  A constant teeter totter- risk vs. benefit, risk vs. seems too many times we are stuck on this same wheel.  

For months, he was on breastmilk and struggling to tolerate it, his pain and symptoms were increasing rapidly around 6mo. of age.  By 7.5mo., we went cold turkey to an elemental formula, having NO idea he would struggle with corn- and be so sensitized to it that he would react to corn syrups, oils and starches.  Things that were supposed to be getting better were just continuing to get worse.  We kept him on the elemental formula for 5mo., suspecting for many months that he was reacting to the corn but too afraid to move away from it with no other options.   Then we found hemp milk and formulated a plan to build him a formula. This proved to be a challenge right from the start when he reacted to the tapioca starch and we landed in the hospital because of the dumping diarrhea causing metabolic acidosis.   He was a sick little boy.  At that hospitalization, we met with the fear doctors have of a child with a restrictive diet not on a formula.   We had taken months to move past that fear as well, so I tried to stay empathetic to where their experience was coming from but struggled because no one was truly hearing us as his parents when we tried to tell them how poorly he was doing on this very formula, how poor his quality of life was, how many hours of the day he spent in pain, and how often he was vomiting.   We were begging for help to supplement his hemp milk but the only advice we were given was to keep him on the elemental formula's that he was not thriving on.   We knew if we were going to move him away from it, we would have to do it on our scary as that would be.  But with reaffirmations that the formula was causing him more problems than it was helping:  the pain, eczema, stomach cramping, vomiting all stopped once we moved away from the corn syrup in the formula.  The endoscopy that he had at that time confirmed that his insides matched what we were seeing on the outside.   And we were faced with one of the first ever-challenging rock and a hard place this allergy puts us in:   remove his allergen from his diet to decrease not only his symptoms but the damage it was doing to his intestines- what effects would this damage have on him long term?  With Inflammatory Bowel Disease in our family history, we knew because of his FPIES- his intestines would not heal if he continued to be exposed to his allergens.  Our choice was to remove the allergen to heal his intestines....even knowing this meant he would still need more foods to complete his nutrition.  Our trek began, in a quest to find him foods his body would accept to fill in his gaps in nutrients.   We knew we were making the right decision for him as he continued to become a happier and calm little boy that slept and played better and never vomited.  He went on to "pass" peaches and millet, we were on the right path.   Moving away from the formula took diligence, patience and persistence but it was helping him control his allergy.   But how do we get him his nutrition?   We discussed a feeding tube at this time, following his first PICC line placement for TPN (following a soy challenge resulting in villi atrophy damage to his small intestines).   We decided it wasn't right for him since there was not a safe formula to put in the tube, the risk did not outweigh the benefit and so we continued to try and find foods that would fill in his nutrition, while keeping his allergy controlled so that his intestines could continue to heal.  Not an easy feat when an FPIES allergic reaction induces inflammation and damage to his gut....

Now, we seem to have that formula to put in the feeding tube.  The feeding tube would give him nutrition and take off stress about his nutrition; but it is still a medical device, and a surgery, and lots of diligent cares, and...but it would assure him nutrition.....It should be an easy head knows it is best for him, why won't my heart follow?     

Saturday, March 3, 2012

Follow up appointments

Two weeks on Alimentum RTF and 1week since dismissal from the hospital, we begin our follow up appointments- Pediatrician, then Dietitian and GI.    

In one weeks time he has gained from 13.4kg to 13.9kg. Doesn't sound like much does it?   It's a pound! (1kg=2.2#)  A POUND in 1 week!!   Ok, so there is a possibility of some slight discrepency with hospital scale and clinic scales but not usually too much if weighed in the same way (dry diaper, only wearing shirt).  Even with a possible discrepancy, there would still be some gain.   It is a GOOD sign.  It is an amazing sign for our little man, who struggles for every ounce and malabsorbs so much when he's reacting or not tolerating a food.  

We briefly discuss the G tube. We have been discussing it at home.   Our initial thoughts are the same as any parent in our situation, we don't want him to have to undergo surgery and have a medically implanted device and all the medical cares that go along with that, every day.   But we do know it would be better for him long term.  FPIES isn't going away- we have a small victory here with the Alimentum RTF, with him tolerating a dairy hydrolosate without an acute reaction; but we are by no means going to give him dairy, and we know (from January trials) that his body is still quite reactive to new foods.  We do not know when we will be able to advance his diet.  Alimentum gives us a base so that trials do not need to be rushed, we can take things at HIS pace. But since he won't drink the Alimentum, it needs to go in him via a tube.   The NG tube has been ok- he's been great with not pulling on it but it isn't incredibly comfortable for him and we need to have it taped to his nose- the tape needs to be changed almost daily and he really, really fights that.  

Next up in the week, we visit with the dietitian tomorrow and get a better idea of where he is at with his nutrient intakes.  I track his caloric intakes and he is well within his 1300 calorie needs and gets 1200-1400calories/day; but I don't calculate out all his nutrients!  So, it's good to have that looked at as well with the ~43oz./day of Alimentum RTF he gets hoping it is enough.  The NG feeds have been going well, he gets 4, 6oz. "feeds" a day and he still takes his Hemp milk bottles 4-6x/day and then he also gets ~20oz. of Alimentum RTF continuous drip overnight.   It is this overnight drip that we are not sure he is tolerating.  It seems to be causing some uncomfortable gas.  

Overall, he seems to be doing so very well.  It is amazing the differences we are seeing, the little boy we haven't seen in many months- towards the end of summer he was sick and this fall/winter with the TPN has been challenging all on it's own.