Which way are we going?

We have no new foods, and we have put ProViMin aside.  Something was causing full allergic colitis.   We started by checking labs and stools and correlating the ProViMin (increased and decreased) intakes to the results.  The first weeks it was evident something was going on but, just as we were left guessing with his symptoms and ups and downs, the labs/stools left us guessing a bit too....was it leftover from Alimentum RTF?  Alimentum caused full enteropathy: reflux, villi damage, decreased ability to digest sugars, large stools, dumping proteins, malabsorbing calories and blood in stools.  It did not cause the vomit issues we have seen with his reactions, so it was either something trace or broken down and it didn't seem to be flaring his enterocolitis.  But enteropathy is just as bad- just not as sudden.  It took us months to determine that yes, he was in fact reacting to the Alimentum.  I didn't want that to happen again so we were taking the ProViMin cautiously but so many good signs were there too, initially.   ProViMin has less broken down dairy (from hydrolyzed dairy proteins to a piece of a full dairy protein - sodium caseinate) and yet his enteropathy was flaring down, his body was beginning to absorb nutrients again and his hemoglobin that was declining had picked back up....but his iron stores tanked again and his protein stores were not picking back up.   Did we just need more time?    Did we just need to push the ProViMin more?  

So, we came back from camping and I pushed the ProViMin- anytime he was sitting down or started acting up, I would ask if he wanted a bottle; I would sit with him if I needed to get him to sit still and take a bottle.   We did dream feeds (where we feed him in his sleep) and he would wake up 1-3x/night to eat himself.  He was getting ProViMin around the clock.  Things should be improving if he was merely recovering from Alimentum.   

My theory was that while recovering from Alimentum enteropathy, his body wasn't fully accepting the ProViMin either.  My instincts were right.  

His body has been having allergic colitis from the ProViMin.   I'm not sure when that kicked in, or if it's been there the whole time because he did seem to be doing ok on it at first, but then he slowly began to get more fatigued and have poor color, he gets this subtle cyanosis around his lips when his intestinal inflammation is "triggered" - it comes and goes if he is getting the protein throughout the day (such as in his bottle); or it will flare up for a few hours if we are trialing a food.  It's beginning to be a good red flag for us....but I can't stop the food on just that alone, I (unfortunately) need symptoms to add up.  

When we got back from camping, we were turning in samples and going to the lab- one Friday's lab results revealed a "spike" in his normal- he had Eosinophils in his blood and his hemoglobin was dropping, Ferritin was quite low as well.  His stools from a few days (week) prior had a significant jump in the markers for inflammation.  Something isn't right.    The GI called and she was alarmed at the results and felt that it confirmed he was reacting to the ProViMin.  Her thoughts were that we needed to stop the ProViMin and get him scheduled for an admission to re-start TPN (total parental nutrition via an IV).   She has no other idea's on why his body can not accept food right now.  It is the answer that she knows will keep his body alive and his brain fed the nutrients it needs.  I know she is just looking out for his needs- both in the now (stop the ProViMin because it's hurting him) and in the future (provide nutrients via TPN so his brain doesn't suffer later); but I just can't help but ask myself if we are doing the right things...do we look further? Do we go somewhere else for 2nd/3rd opinions?  Do we put him through new tests and hospital stays and who-knows-what-else?  Or, do we just do what we know to do and stay home.    I don't yet know that answer, I've been praying and praying about it.  I just can't see through this muddy dark tunnel.   

For the immediate needs, hubby and I talked about it and we decided a few things.   One is that he wasn't as sick as he has been in the past and we still aren't sure it is the ProViMin.   He seems to be getting more and more corn sensitive, so maybe he got "corned" the day of the stool tests- his diapers that he has always been ok with are now causing rashes (diapers typically have corn starch in the liner, he has always seemed to tolerate Pampers baby dry) so we switched diapers and wipes (7th Generation diapers- tolerates MUCH better) and Waterwipes wipes...which are on the fence of tolerance but a significant improvement over the wipes I've been using with all the corn-y ingredients.   Also, a few days before the lab draw that showed the significant changes, he had had butter and a lick of yogurt (planned introductions to be "push" dairy to see if that is what he was reacting to in the ProViMin and both I had hoped from my research, would be corn free but wasn't positive), he also ate a good portion of pork (same night as the yogurt).   A few days prior to that, he had LICKED a paint brush while painting!!  No idea why he did that, took us completely off guard because he hasn't done that since he was a baby.   Any one, or all, of these things could throw these test results.   The GI was calling me on a Friday afternoon, before she was to leave town for a week with this news.   So, we decided it would be best to wait out the week- continue the ProViMin but do nothing else (no paints!) and see what the next weeks test results would be.  It was a rough week, giving him something we weren't sure if it was safe and that looked to be more and more unsafe but we also talked about doing an endoscopy before taking him off the ProViMin if the blood showed eosinophils again.    Eosinophils in the blood doesn't automatically mean EGID (eosinophilic gastrointestinal disorder) but it could and I don't want to miss this "snapshot" of his body telling us something.   We waited until the next Monday (when the GI doctor was back) to do the labs.  That morning, middle of the night, I gave him a bottle with an increased dose of ProViMin- timed so that it would be about 6hrs. before the lab draw....to see if the snapshot could tell us something, anything.    

The increased ProViMIn did not spike his eosinophils again, those returned to normal levels in his blood.   So, the spike of labs in that direction seemed more likely from the butter, yogurt, pork or paints- not from the ProViMin, so that was a relief.    But, this blood showed a drop in Neutrophils (white blood cells that during an acute reaction elevate but during a chronic reaction for him, they decline- like his body is fighting something and depleted (chronically).  He's even been on neutropenic precautions at the hospital before when he's chronically reacting (because these levels look like a little boy susceptible to every illness- a body fighting hard to keep those illnesses out that it depletes it's stores, chronically).  His hemoglobin did pick back up a bit but his iron stores continue to drop and his protein stores are not picking back up.   The blood in his stool samples continues to worsen but the inflammatory markers are improved.   The GI and I agree that this is allergic colitis; that although it is easier to manage than enteropathy or enterocolitis (in comparison to the two), it is not something we can continue to subject him too- it will only continue to get worse; and any "hit" to his system will flare it so significantly, he will end up needing a blood transfusion.  We need to find a new path, a different path that he can thrive on....but where does that path lie?    

TPN is the answer from the GI.   New food challenges and time is ours.  Which one will be the solution, we are not sure.   

TPN would meet his nutrient needs, but TPN is not free of his allergens (corn and soy).  We could potentially leave the soy out (that is in the lipids-the fats), since he takes a diet orally- we can give him fats orally (which he gets in hemp milk and safflower oil); but we can not leave the glucose/dextrose out- it is the "rider" for delivery of the nutrients.  What does a corn allergic person do?  I'm not sure.  Maybe we will need to explore that, but first- we owe him to try a few other things....

But his allergy is a GI allergy and shouldn't be affected by the TPN ingredients, right?   Well, the whole time he was on TPN, he had villi damage....so his gut was getting "hit".   Also, he regressed, significantly.   I saw it happening while he was on TPN but I noticed it even more dramatically once he came off.  He has underlying sensory issues that come out (significantly) when he is reacting a food.   Well, on TPN they stayed around all day long and his body couldn't cope with it.  He began to be very specific in his needs, we had to keep the house dark, he didn't want anyone touching him, his language had halted and was starting to go backwards....everything was in a heightened state interfering with his quality of life, and ours.  It's not the ideal situation.  However, he did gain weight, his hair grew, he expanded his developments (even though his sensory issues kept him from practicing them, they were there).  I know that if his body can not absorb nutrients any other way, we will have to do it - we just need to know that is the right option.

GI Appointment

I don't even know what step to take next....We pray that we recognize the answers to our prayers on the next directions he needs for healing....

I had called earlier in the week to get a follow up appointment with the GI because of his Gtube.  The previous week, the surgeon's NP had said that their recommendation would be to put him under sedation to do a tube study.  A conversation with this NP on that Monday morning and she now felt he should have an endoscopy because it wasn't just the continuous granulation tissue that was concerning them, it was the continuous brown drainage that should not still be there with a tube that has had all these weeks to heal.   This tube is causing him daily pain and suffering and we can't decipher which symptoms are FPIES/adverse reactions to foods or tube pain and we're not even able to USE it so we agree- further evaluation needs to happen.  

By the end of that week, we not only need to talk to the GI about a tube evaluation but we need to talk about a new plan with the Alimentum and food trials...

We discuss about how he has been doing and how his Gtube is and where we are at and going.    She is sure he needs reflux medications; remindinh her there are none that he can tolerate.   She doesn't know how to treat him if she doesn't treat his apparent reflux/ulcer, attributing everything (including this tantrum) to the ulcer.  I don't mean to disagree with her but he has days where these tantrums are not anywhere near a part of the day, he has nights where he sleeps through the night, he has days where his tube doesn't ooze and isn't inflamed.  I just am not sure he has ulcer damage but agree that I would love to try and treat it- if it can be done safely.   We decide on sodium bicarbonate, in pharmacy dosing and strength, to at least neutralize the stomach acid for awhile.  She feels that the Gtube is causing the stomach to produce extra acid as this can be a normal response to a Gtube (the body naturally responds to the foreign object), she feels that the drainage from the tube (the brown gunk) is stomach acid....although does note that it is interesting/surprising that it is not breaking down his skin around the Gtube.   My suspicion is because it is stomach acid but it is not acidic. 

We discuss the Alimentum more and she hears our concerns over his tolerance of it, or our difficulty in finding or maintaining a tolerance of it and at first suggests we stay under 8oz of it per day and then later changes her mind and agrees we stop it altogether, in preparation to trial a new formula- one called ProViMin   So, the plan is to stop the Alimentum and start the Sodium bicarbonate as soon as we get the Rx for it (regular old baking soda is too hard to "dose").  

The Spiral

The lubricant kept Sam "off" for a full 10days, and wasn't until day 14 that we started to see his color come back again- otherwise he is a pale and pasty that has us worried.  I was so relieved when it did come back.   

In the meantime, his tolerance for the Alimentum dropped significantly.  I have never been able to really tell how he is doing on it- knowing that something isn't quite right but how off is it and how bad is it? is the question.  No vomit or diarrhea means no acute FPIES reaction but poor color, circulation (blue around his lips and eyes a lot and mottling on his skin), poor appetite (he doesn't ask for food when he has the Ali and no, it's not the calories because he takes in more calories when off it), increasingly poor sleep and mood/behavior and decreased play.  Any little wind blown in the wrong direction will set him off and he loses the ability to control his tantrums.  I know, you're thinking- what 2yr.old can control their tantrums but there is a huge difference between a "normal" 2yr.old tantrum and these possessed irrational tantrums he goes through. He has 3 stages of tantrums- 1). normal 2yr.old, 2). unreasonable and intense and 3). irrational, unrecognizable, possessed.   When he escalates to #3- we know we must stop and assess the situation because they really are not his true nature but feel it is his way of telling us he hurts.  We were getting more and more #3 tantrums with continued Alimentum.   Exhausted one day last week and busy running errands- I did not add the Alimentum to his afternoon bottles and what was becoming a typical evening meltdown fest, was much-much less and easier to control.   I really started to wonder what the Alimentum could be doing to his system?    And, even bigger question- why?   What from? What was causing this? Dissacharide deficiency (carbohydrate intolerance) or FPIES or something else?   Whatever the answer, his quality of life and ours was increasingly declining.   The stress it has on all of the family members to tip-toe around a 2yr.old's insane screaming tantrums is beyond any words I can describe here (especially since I'm still a bit sleep deprived from it all).  

So, that was Tuesday and then Wednesday we skipped Alimentum altogether and he was an angel.  So, so, so nice to see him just PLAY and BE TWO and ENJOY his brothers and his toys, and books, and to SLEEP for a normal nap and wake only 1-2times/night instead of oh-so-many-more-times.  Clearly, clearly, something is NOT right- but if it is the sugar, can we find a dose that works for him?   If it is the sugar, maybe it is worse after a reaction when he gut is inflammed so we just need to cut back after a reaction and then slowly build him back up again?   But wait, after a reaction is exactly why he needs this formula so badly to begin with.  And if he's on it at other times, he doesn't want to eat food - so then we can't trial actual FOOD....ok, if he was 6-9mo., maybe this would work better because of the nutrients it provides him- we could ride the line a bit longer but he's not 9mo., he's almost 3, he needs FOOD, and we've been riding this line for 3 mo. now and it is quickly reminiscent of his Neocate days (except on Neocate, he vomited and was much more miserable but are we simply building to that?).   What can we do?  What should we do?  

By the end of that week, he seemed to be fully over the lubricant inflammation and he seemed to be so much better with the removal of the Alimentum but we aren't ready to just throw it out yet, maybe we can find a threshold (if it is just the sugars)?  So, Thursday we gave him more Alimentum -  wanting to sort of push it so we could be sure it wasn't FPIES, so we did- adding 2oz. to each 4oz. hemp milk bottle and by the mid-afternoon he was a MESS!  He was tantruming, he was unreasonable, he was pale, he was not interested in eating, or playing, or sleeping, or....it was a rough rough day and becoming more clear that we needed a new plan - a plan that did not involve Alimentum.  

Oh, and his tube?  STILL unable to use it!! It's been WEEKS, it causes him pain every day- I don't even know exactly how much except that it is too tender to touch....even watching him playing, he will guard it and pull away from something that may rub on it.  It oozes brown/yellow drainage all the time and the granulation tissue comes and goes and often bleeds.   

He needs a new plan, and we have a GI appointment coming up....

Bittersweet

Little Man has been drinking the Alimentum RTF formula, little amounts mixed in to his hemp milk bottles!!    It had been too many days since we've been able to use his tube (and not sure when we'll be able to because he is still guarding it in pain/sensitive and the granulation tissue they just removed is already back!) 

Last Thursday afternoon, his daddy thought we may as well at least try to mix it into his bottle so we put a 1/2oz. in his 5oz. bottle and he drank it without noticing one bit!!!   We thought, could it really be??   

Well, with the recent ingredient change in the Living Harvest Tempt Hemp milk to add sunflower lecithin and him having reactions to this, I have started to make the hemp milk from scratch- a company called Manitoba Harvest (guess we need to move to Canada since half his food supply is from Canada!) makes a product called "Hemp Hearts"- they shell the hemp seeds and package them for sale- hemp is used to make milk,or flour, or serve on salads and etc.   They have a "nutty" flavor - mild nutty....we've had to mix this homemade milk into what we have left of the Tempt non-sunflower milk to get him used to the more nutty flavor (which he has been doing great with)   Well, it looks like having that nutty flavor masks the Alimentum formula flavor/smell MUCH better then when we were trying to mix it into the Living Harvest prepared hemp milk during the trial.   I can't even smell it once we've added it to the bottle!   

We added 1/2oz. a few times on Thursday evening and then through the night too, we upped it to 1oz. in a few bottles on Friday and by Saturday I had added an 1-1.5oz. to every bottle!   Sunday, he even took a few with 2oz. in it!!  He got 13oz. of Alimentum yesterday and we can already see the difference in his energy levels (his Vit.C levels have been low again, thus causing his iron levels to dip dangerously low again and so between that and his tube giving him trouble- he hasn't been too active.    Yesterday, we couldn't slow him down!   

Something is better than nothing, even though it's not enough for all his nutrient needs yet (of what is missing from the hemp milk formula for his age) and we aren't sure how much he will let us add before he starts noticing (we're going up slowly because we don't want him to mistrust his bottles).    

We are so excited about it and yet it is bittersweet......I knew we could get him to drink it mixed in eventually... it's a little sad having gone through what we have and what he has endured for these tubes (NG and now G) when he's now drinking it....although not nearly enough for all his nutrient needs without a better menu; and that is what we knew we would battle (drinking adequate amounts) but with his tube giving him SO much trouble this week and now it looks like there may be something brewing - infection or abscess or something because the granulation tissue came back already, the site is still too painful for us to touch at all (or he is simply so averse to it from all the manipulation and negative experiences so far), and on Saturday I noticed some green drainage oozing from it so all of this will need to get checked out and the NP on Thursday said he will need to be sedated for some tests to see what is going on with this tube not healing well.   So, our excitement is capped a bit but we are very excited about him drinking the Alimentum (and feeling better on it), and potatoes continuing to go well!!   

More Granulation Tissue

Ok, maybe I left out most of the "good days" out of the last update!  But getting comfortable with his tube and tolerating the feeds WERE good days...even though they were sorta short lived.  It was hard to see him slide downhill so quickly, and discouraging. The granulation tissue came back with a vengeance!  It seemingly is not there one minute and popping out a minute later- it happens fast.   It is a little "lip" around his tube site that is pink/red and inflamed, it contains tiny vessels and so it weeps and bleeds, and when rubbed, weeps and bleeds some more.  It is the body fighting the wound- not quite letting it go to scar tissue.  Many people with tubes deal with it, some off and on. They are surprised that he is having such significant issues of it so soon but it isn't unheard of so the thought is just to treat it like anyone else.  

The issue comes because he will not let us touch him when this granulation tissue begins to form, and then we have to go get it burned off so then he becomes even more averse to being touched....and then we're stuck in a vicious cycle of not getting his feeds in and him having negative associations, pain/sensitivity with his tube site.  They say that the granulation tissue should not be causing him pain, that it doesn't have nerve endings and is not painful.   Well, little man tells us another story and is clearly in pain!

We are worried about him getting his nutrients, he needs the formula until his diet can be built- and since that is many months away- is the reason FOR the tube, so to go through everything he has and then not be able to use it is so very frustrating.   

We went in on Monday morning to get the granulation tissue looked at again; sure enough, she had to burn a significant piece off- he was more upset about being held down than about it being painful....I can tell his pain isn't all about granulation tissue, there must be something else.    We had the Nurse Practitioner hook up his extension while we were there and do a "feed"; but we didn't leave it hooked up; and although we were able to get one more "feed' in that afternoon, and one on Tuesday but then Tuesday afternoon, we brought him back in to get the "lip" burned off again because I guess if you stay right on top of it at first signs, it will help it stay back a little longer.  When I say, "burn"- it means to use Silver Nitrate sticks and cauterize it off.  It turns the area black and gives his skin a "blueberry" stain (looks like ink), and then it eventually dries up and falls off.   At this appointment, the nurse had to clean off this dried up residue quite a bit because he had been SO sensitive, he was not even letting us CLEAN it!  She comments about how the leakage and dried stuff can make his skin more sensitive, causing some erythema (redness/rashy).  I'm not sure if the erythema is caused by the tube/site leakage or an issue with the steroid cream we need to use to help treat the granulation tissue between silver nitrate treatments....could be both but he doesn't always have this redness.  Anyway, she asked about getting him in the bathtub.   They told us not to bath him until he was healed, 4-6weeks!   We are just now on the 4week mark and we just honestly were not taking any chances of him getting an infection- especially since at the last time he had the granulation tissue removed, he had a spot that opened up and bleed.  Why take chances?   He's had bed/sponge baths for the whole 6mo. he had his PICC, what's another few weeks?   Well, we got the clearance to do some baths, that has helped a lot with keeping it clean! 

Wednesday, he wouldn't let me touch him AT ALL, he even fought and cried during diaper changes, afraid I would touch his site too?  Or was that even painful for him (moving his belly to get the diaper on and off and him cleaned up)?  His daddy was at work and besides, we have already decided we will NOT be holding him down to hook/unhook his tube extension- between him having a PICC line that needed cleaning/site cares (involves a piece of clear tape, taped over the line that needed to be ripped off and sterilized under and then replaced) once a week for 6mo., not to mention all the lab draws and multiple other hospital tests, procedures, etc he's endured- this kid has strong aversions to being touched unless he wants to be! STRONG! (and strong he is!).    So, all of Wednesday he did not get any feeds at all.   I am really getting uncomfortable with this as this is not getting better as quickly as we had hoped and it is too many days without the formula, with the nutrients he needs.   Of course he still has his hemp milk formula, and millet and peaches but it isn't enough anymore....   

Clearly it will be weeks, possibly months before he is not so averse to the tube and letting us hook him up the multiple times/day we need to- we discuss how we need to come up with some new plans.    We have previously looked at another formula powder called ProViMin- a powder that we could add to his Alimentum formula and concentrate it, allowing him to get more nutrients per feed and having to be hooked up less times.  It is Proteins (sodium caseinate and amino acids) and Vitamins/Minerals, no carbohydrate source and low/no fats- it is for metabolic conditions but it seems perfect for him....except the sodium casienate which is a milk derivative.    The casein in his Alimentum RTF formula that he is on now is hydrolyzed to be hypoallergenic to those sensitive to milk proteins, sodium caseinate is not.   We would be taking a risk of sensitizing him to dairy, when he otherwise seems to be doing fine on it via the hydrolyzed form in the Ali RTF.  But the benefit seems to be outweighing the risk more and more....

We called surgery back as instructed on Thursday to check in with what next steps we should take for the granulation tissue.  We discuss that over the last day, how he has resisted being hooked up, seems to be in pain, and something new I've noticed is how he is guarding the tube site- when I pick him up, he will automatically C his back as to avoid his stomach rubbing against me - it is curious that this is causing him so much pain and discomfort (especially considering the high pain tolerance this kid must have to be in the chronic pain he has lived with his short life). I ask the Nurse Practitioner if there could be something on the INSIDE that would explain these symptoms, she agrees that this is not a good sign, and he could have an abscess or something.   Under normal circumstances, he would get evaluated by doing a oral contrast study or ultrasound but she says these tests require him to cooperate - which she knows he will not do (STRONG aversions!).   He will need to be sedated and unless it is an emergency, this has to be scheduled.  So, it is decided that we will take the wait and see approach.  Wait to see if the sensitivity goes down, or if the redenss/pain goes up (abscess can become infected quickly so if he has any symptom concerns- we are to take him to the ER immediately.    

Good Days to come?

With the granulation tissue removed, he was having some better days. His daddy and I still had to work together to get him hooked up for his feeds, and he wasn't getting all of what he was supposed to but we were working our way back up.  His daddy was able to take some time off work to begin to work him back up a feed schedule so last week when he had to return back to the routine, I called our home health nurse to come out and help me get more familiar and comfortable with hooking him up by myself - because, 3 weeks in and I had not ever hooked up his feeding tube extension to his button on my own (we had kept the extension hooked up all this time, taped to his side; but with the granulation tissue complexities- we needed to be unhooking him so it wasn't pulling on the tube/button.  

The home health nurse got here and he resisted right away- he had skipped his nap, so that wasn't helping.   We chatted about his general tube cares for awhile and that seemed to help him familiarize enough and we made one last effort to ask him about his tube  (feeding extension) and where it was at - he casually said "oh, in the other room"; I asked him if we should get it and he said "yes"; and then asked if I could hook it up and if he would help, he said "yes, here" and opened up his button and grabbed the tube extension in an effort to hook it up himself!  I was near tears at how good he was being and how brave he is.   I couldn't quite get it so the nurse quickly jumped in- so as to not lose his enthusiasm for it!  This was a contrast because just a few minutes before, he was actually pulling at the button part, pleading not to be hooked up!   I dread the day he asks for the button to be taken off/out; or worse yet- if he tries it himself!  It confirms that we need to focus on his relationship with this tube- it needs to stay positive.  He needs to understand that it is for his benefit, and that it needs to be cared for but also that he needs it.  It's a fine line to walk with a 2yr.old!! 

We got him hooked up and a quick feed in him and I was optimistic that we could begin to get back on track with his feeds.   Over the next few days we were able to get a few added feeds in; so things were moving in the right direction --although he was still was refusing many feeds.   We can't fight this, so we just have to continue to keep it positive and concentrate on getting things healed so there isn't any pain for him....there shouldn't be pain. 

With the decrease in Alimentum RTF formula, we were seeing some decline in his energy, and know he needs the Vit.C to absorb his iron (as his iron stores are chronically low), thankfully his hemoglobin is holding (a recent lab check confirmed that).    So, we start talking about how we have the compounded Vit.C (beet root derived) that we still have not trialed yet, if he is only letting us hook him up 1-2x/day, we could at least maximize the Vit.C amounts with the Vit.C supplement.  Sunday afternoon, we decide that a discussion on Monday with the GI is due.  We aren't meeting his needs with the decreased feeds and we also need to follow up with Surgery as we're concerned over the growing granulation tissue again on the tube...how can we be moving in the right direction and still have so many things to challenge it?   We're trying to be patient.....

"Feeds"

"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 have....to 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!! 

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. benefit....it 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 own...as 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 decision....my head knows it is best for him, why won't my heart follow?     

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.    

Adjustments

As we continue the Alimentum RTF via NG tube at home, we are not seeing any build of concerning symptoms and most of the other symptoms seem to be evening out.    We have not seen any more blood in his diapers, and his mood remains good (appropriate 2yr.old), his sleep is ok - and we continue to work that he can handle better overnight.  I suspect that his system is just simply struggling with the continuous drip all night long and wish that we didn't have that but there is no other way to get in that volume of formula.     He continues to drink his hemp milk well and enjoys his bottles but refuses any drop or mention of the formula.    He has been great with the NG tube though, maybe it is because of the PICC line and he is used to having a tube from his body.   The worst part of the NG tube is having to change the tape that keeps it anchored to his nose- he REALLY does not like us to touch it or mess with it at all (so he doesn't mess with it either!) 

Today, he ate peaches!  He asked for them at lunch time.   I cook and puree fresh peaches and store them in ice cube trays, so I can pop them out and defrost them in the microwave when he wants them, or when I want to use them for baking.   He ate 4 ice cube trays!   Licked the bowl clean.    He does like his peaches but he doesn't eat them regularly and he is not fond of puree....so this was really great to watch him, especially the licking the bowl clean!  

I continue to pray (and feel prayers for us) that he will continue to adjust with the formula and that the symptoms we have seen are simply just healing.   On scope just days before the challenge introduction of the formula showed that he still had some degree of villi damage....maybe we were seeing the symptoms because of that; but with the increasing feeds through his gut, we are seeing healing?  We are hopeful.   

We still do not know yet how we will continue to get the formula in him, if not an NG tube, than a G tube so that lingers on our mind...a decision that will not be easy to make...

He seems to have good days and then seemingly random off days.  We are concerned for his tolerance of the continuous feeding he gets through the night or is it something in the Alimentum itself?  Still not sure about it all because the other day was rotten and I am not sure what that was about- maybe he got "corned" (a term referenced in the corn allergic people when one is exposed to corn- because it is EVERYWHERE!)?  He was pale and yucky all day.  But he has been improved since; although he has random eruptions of skin coloring changes- not rashes but mottling, purplish skin, blue around his lips, etc....I can't seem to figure out what to make of all of that- doesn't have a history of it when not trialing foods (but presents itself when trialing).    He also has a serious "allergy ring" (diaper area).     We will need to work through these things over the next week or so -- before we decide to put a G-tube in for these feeds; we want to be sure he is 100% tolerating it.   

I try not to think too far ahead though, he is good today... and overall, he's doing really well- not as high maintenance and it feels good to have glimpses of a family routine and structure again that isn't completely around his mood and schedule.   

Crap...

Well, literally.     

Little man has another diaper with blood in his stool - sent it for testing to reveal it was positive for blood but before that, I took a picture of it (yes, I take pictures of my son's diapers- YUCK, but trust me- it is a lot easier to analyze via a picture than standing over it poking at it.  And the pictures have helped the GI doctor see what I mean by what I describe....they know their poop!   She is concerned by it and wants to watch him closely- she wants to see him if he has anymore blood over the weekend.   He had a diaper today with no visible blood which is great but the neon green, slimy, mucus, smelly parts were not encouraging.   I am more concerned about malabsorption problems.  He is taking LARGE amounts of formula (Alimentum through the NG tube and Hemp via his bottles)- 67oz/day for the past 2 days!   

We worked out a feeding schedule for his NGT that we feel is something he can tolerate well- without overfeeding him.   It gives him ~43-45oz. of Alimentum/day while still allowing him to take his bottles- which we are not pushing but he ASKS for, and drinks every last drop of- his appetite is increased!  Part of that is because of not having the IV nutrition anymore.   His caloric intakes are about the same (1200-1400 calories/day) as they were on TPN and hemp milk.  So we are hoping to see a weight gain this week.  If there is no weight gain, and his diapers continue to be mysterious, we may have to look deeper into what is going on.   Maybe this is all just adjustment stuff as his gut gets used to the new "food".    He still won't drink the Alimentum though so we would be looking at a Gtube if we deem it safe after a few weeks via the NG tube.   

His mood has been poor; plays nicely but hits a wall and then just falls apart- so something is bothering him.   We just need to continue to take it one day at a time and see what tomorrow brings....

One day at a time....and celebrating the small victories along the way

The plan for readmission was to do the challenge dose, wait 12hrs, and then begin his 24hr.dose of 50oz. of Alimentum via NGT feeds.   That dosage begins at 12am Tuesday, and he receives it through the night and every 3hrs. throughout the day.  He did drink some hemp milk formula bottles on top of that- as that remains a comfort item for him and we want to maintain that.  He played SO well today, SO much energy and smiles and giggles and barely any meltdowns and no other signs or symptoms.

With an NG tube inserted, and formula looking like a pass; the other thing that needs to be done is removal of his PICC line.  His PICC line that has been in his chest since mid-August is now not useable for IV nutrition, and the risks outweigh the benefits of keeping it in.  It feels strange to think of his "lines" not hanging from his chest, very strange.   But we are anxious, and glad for this moment.  Little man recognizes the walk to the treatment room and his bottom lip begins to quiver.   That look, that look of understanding and comprehension that he knows, that look of fear and "mommy please tell me it is going to be ok, and you'll be with me" look in his eyes.   I swoop him up and quickly tell him how proud I am of him- he is being so strong and brave.   He is such an amazing little warrior. 

It was a quick procedure, actually oddly quick- scary how fast and easy that would come out of his chest.   A small scar will be present but likely it will just disappear into his chest as he grows, as his arm PICC line scars from Dec.2010 have.   

We anticipate being discharged the next morning- he is doing SO well!!  They will start his home regimen doses through the night Tuesday night to keep us on track for Wednesday at home feeds.    Except we forget to calculate that he doesn’t need a full nights dose, after already getting a full 24hr.dose.  He got 30oz. overnight from midnight to 7:30am- a lot of volume! Too much!  Back to back full doses resulted in a vomit session on Wednesday morning.   

I get to the hospital around 8am, and he had just been cleaned up and was happily playing in the playroom when his daddy broke the news to me….”he vomited this morning”.  I stop dead- NO!  What?  He looks ok now but that isn’t new, he’s had reactions before where he played fine after.   They have not done labs yet and I’m concerned as we do know that blood counts can return to normal quickly following a reaction- within hours is what the literature says.  Although his electrolytes will still be “off” as his body fights the dehydration….but after just getting 30oz, I’m not sure we’ll see dehydration signs!

Two hours after the vomit session, we finally get a lab draw.    I’m concerned over the timing of this because it was supposed to be immediate but with further discussions with his daddy, we don’t feel this was an FPIES vomit session- it just didn’t seem like it to him.   It was a lot of vomit, and he emptied his stomach contents but it wasn’t retching vomit and it wasn’t to bile…it was stinky Alimentum (and I can still smell it on him- both of them, which isn’t normal with the bile vomit- that has a different smell, an acidic smell vs. this putrid sick vomit smell).  We are all encouraged that he is happily playing but now vomit and we’ve seen 2 blood in his stools….I want to be sure we are doing everything we can to collect what we need to analyze this as we move forward.   We wait for the labs to get back to read and request a consult with our GI for her thoughts on if we should have further inpatient evaluation or not. 

The labs come back and they ALL look good- hemoglobin is good, white cells are good, electrolytes are good.   The on staff pediatrician comes by to relay the good news.   We speak to our GI shortly after that and are reassured that she is following closely and although she remains concerned over the blood in his stool, she is encouraged by all of his other progress.  She agrees with our thoughts that we simply overfed him and tells me to slow his rate down tonight so he doesn’t get as much overnight and we don’t risk repeated vomit sessions.   We are set to go home- all of our equipment for an NG tube.   We have follow up appointments next week with the dietitian, pediatrician and GI to assess where we are at in a week and to make plans for next steps (tweak formula volumes, try another formula to get higher concentration, discuss Gtube vs. getting him to drink a new formula)…so much to think about, so much to process.    For now, we are home- re-adjusting to our schedule and adjusting to this new "feeds" system which he seems to be tolerating well, he is playing well and enjoying being home.  He even had a FULL bath!!   He hasn't had a bath since August because of the potential of introducing infection into the bloodstream with the PICC line- hard to not get his dressing all wet when you are two, splashing in a bath, so we’ve stuck to sponge baths.

One day at a time....and celebrating the small victories along the way…

Challenge for Chronic FPIES

From The Current Understanding of Immune Mechanisms ofFPIES “FPIES manifestations differ in the chronic and acute forms…”Removal of the offending allergen should lead to rapid and complete resolution of symptoms within a few days. This chronic initial phase can be followed by an acute phase if the antigen is removed from the diet for at least 2–3 days and subsequently reintroduced, with pathognomic symptoms starting approximately 1.5–2 h after ingestion. Severe, repetitive vomiting generally occurs 1–3 h and diarrhea occurs 5–8 h after feeding [13]. Associated features may include pallor, lethargy and cyanosis”.

While we celebrate that our little man has not had an acute reaction the Alimentum RTF (from the casein protein), we are still concerned for a chronic reaction, based on Samuel’s history of chronic FPIES (dairy through breastmilk, soy, rice and corn triggers were all chronic FPIES before we pulled them from his diet and reintroduced and confirmed the acute FPIES.  

Little Man had an acute reaction of projectile vomit, and diarrhea to Nutramagin at 6mo and again at 7mo.  Nutramagin is also hydrolyzed dairy proteins- like Alimentum is (just different company).  So, we did not try Alimentum at that time. Two years later, a reintroduction of this same hydrolyzed protein did not result in an acute reaction is a VICTORY for our little man!   A sign of his FPIES triggers healing, one by one.  A sign that by avoiding milk in any and all derivatives from the beginning helped his body lose the Tcell memory that it once considered it an antigen (something to attack).  We are very encouraged by that.   But since he has more of a history chronic FPIES and since his body has not tolerated tapioca starch or soy oil before (other ingredients in Ali RTF), we want to be sure we have taken all the measures to be sure his body is accepting this nutrition.   

After a weekend rest, we are re-admitted on Monday morning for the challenge dose of Alimentum (5oz. via the NGT); and we will wait 12hrs. to observe for a reaction.  In that 12hrs, he will get his hemp milk formula.   We are admitted around 9:30am, baseline labs and assessments are done and Sam gets his dose of Ali RTF at 12noon.   He isn’t settled enough for a nap but at 2pm has a diaper that has blood in it again.   This is not encouraging and this one is more than the first one….but he didn’t have them all weekend and now with the challenge dose he has it again.   The stool is not diarrhea, but the blood has us concerned.   He has a fairly uneventful rest of the day and 6hrs. comes and goes, then 9hrs and then 12 and NO reaction.    NO vomit, no diarrhea, no symptoms (other than the blood in his stool).   I breath a sigh of relief and collapse into sleep- I’m exhausted….trial days are exhausting as you wait and see if the body is going to react or accept the food. 

Pressing through and ready for a break...

With the picture muddy, we decide to increase the dose to help clear things up.   The increased dosages start in that afternoon (Wed), and he begins to perk up even more, improved demeanor but he looks more pale and tired, and has some blue (cyanosis) around his lips.  I am very encouraged by his improved mood but still confused on the paleness and cyanosis episodes. 

We anticipated some symptoms, Little man’s body has not accepted new food in so long- and the plan was to press through….we will push through to tolerance or reaction (vomit/diarrhea/dehydration).  We need to know.   This isn’t a typical trial- it’s more of a challenge but not a challenge we can guess on, a challenge we need to be sure.  This formula could help sustain him for the next 2+yrs as his body outgrows the level of reactivity it has had, as his gut heals, as he grows.  We will press on.  We need to know.  

We also need to significantly increase his doses, a discussion with the dietitian reveals he will need ~50oz. to meet his Vit.C needs;  which he does not get in his hemp milk formula, the only thing providing Vit.C is his diet is peaches which he doesn’t eat daily.    The Alimentum will also provide some B vitamins that his vegetarian protein source (hemp) does not.  The B vitamins help his body turn the iron into oxygen rich hemoglobin and further help prevent his anemia.  We are quickly overwhelmed by this realization that the Alimentum will not be a supplement but pretty much needs to replace his hemp milk (in volume).

Wednesday night he continues to receive the feeds through the night, he has increased gassiness in his sleep and is tossing and turning a lot through the night….nothing that wakes him out of his sleep but definitely different than how soundly he has been sleeping for the past many weeks.  Thursday morning  brings a cranky and whiny boy in the morning but he eventually starts playing and plays well through the mid-morning.  During rounds with his pediatrician today, we discuss how we want to increase the Alimentum to get closer to what he is going to need and see what that does for his symptoms.   So, the first day (Tuesday to Wednesday) he got 8oz. of Alimentum (mixed with his hemp milk formula) via the NGT, the 2nd day (Wednesday into Thursday) he got 12oz. of Alimentum (mixed with his hemp milk formula) via the NGT and now, the 3rd day (Thursday afternoon to Friday afternoon) we want to increase to 24oz. Alimentum mixed with his hemp milk formula via the NGT (we divide this increase into 12hr.segments- building him up slowly). 

I also discuss that because of the symptoms he has been having, that are still not clear (don’t seem to be building but are still present as we press forward), we will need to try and rule out if what we are seeing is a chronic FPIES.  A recently published article outlines the chronic FPIES: “The CurrentUnderstanding of Immune Mechanisms of FPIES” (page 4).   Little man has more chronic FPIES reactions than acute FPIES.   Once we realized FPIES was what was ravaging his body, and removed his trigger proteins we saw dramatic improvements in his gut symptoms (chronic vomiting, diarrhea/constipation, etc)….reintroduction of these proteins results in the classic acute response (profound vomit followed by diarrhea and dehydration).  His worst trigger remains corn.  You can almost set your clock by a corn ingestion- even trace/contamination amounts.   So, to be sure he is tolerating the Alimentum, I propose we remove the potential trigger protein- going home for the weekend, get back to a baseline (be sure what we are seeing is stress or hospital related) and we reintroduce a dose on Monday – a challenge dose; followed by a 24hr.”feed” of the 50oz. he needs for his nutrition (to be sure he can digest this volume).    The pediatrician agrees to this plan and we press through Thursday, increasing the Alimentum by Thursday afternoon. 

That afternoon, he is very tired and cranky after his late nap, mostly just wants to be held, noticed cyanosis on his legs again, and also a “lacy pattern” red flare color to an area on his arm, and his skin is mottled looking.   He clearly isn’t feeling good but it is not yet clear why.  Then around 7pm, he finally has a bowel movement and there is clear streaks of blood in it.  We get it tested and it is positive for blood.    Blood in a the stool of a child with Enterocolitis is concerning but we press on; this will be evaluated later, especially if he continues to have them.  Our GI has been clear with us that she wants to assure he is fully tolerating the Alimentum before committing him to a Gtube – which is why we elected to the NGT, so we can do 2weeks full strength and then assess where he is at, with as sensitive of a system as he has- we know to proceed cautiously

Going into Friday, we’re getting ready for a break.   We are ready to go home.   We are still concerned about the blood in his diapers and other symptoms but hope that this break will help us see things through a clearer light. 

He is SO excited to be home!  He even asks for his peaches and eats about a 1/4cup of puree peaches!!  He is a little clingy in the evening and struggles to calm down to sleep but he slept well overnight, and awoke looking more rested than he had been in the hospital- maybe it’s the lighting?  Maybe it’s just the comfy bed at home vs. hospital atmosphere.  This little boy is glad to be home and plays well with his brothers.  His diapers do not show any signs of blood through the weekend.  By Sunday evening, we are seeing the effects of not drinking enough of his hemp milk formula.  He used to drink 64+oz/day before TPN, meeting his 1200-1400 caloric needs/day; but he’s not used to having to drink that much since TPN provided him 800calories/day, he dropped down to ~30oz.; so now he is only back up to ~45oz. and it is clearly not enough.  If he were to stay on hemp milk formula alone, I’d have to go back to setting my alarm and waking at night to feed him through the night to get him back up to his daily requirements (I did this for 2mo. after his initial TPN in Dec.2010, until we started probiotic and his appetite increased during the day….I would do it again if need be.    But we are heading back on Monday to rechallenge the Alimentum RTF.  

Muddy Picture

We knew we’d have things that would come up in the trial/challenge to muddy the picture, we did not anticipate Little Man completely refusing the formula and the decision made for us to starve him to get him to take it.  We did however anticipate the NGT (nasogastric tube); we had discussed it previously with the GI- how he may need it to do the trial, to be sure he consumes enough for us to call it “safe”, we also discussed a Gtube (a feeding tube surgically inserted into his stomach) if the Alimentum RTF was an FPIES pass but if he does not accept it…we know it will at least need to be a supplement in his diet. He has hemp milk that is providing the calories and protein and fats he needs, but it is lacking in some nutrients- the nutrients the Alimentum would be able to provide.   We haven’t done the math yet on how much he needs of the Ali. 

The Alimentum RTF trial continues and Little man continues to get round the clock “feeds” via the NGT of the 1oz. Ali+3oz. Hemp milk mix. He appears to be tolerating it well and in the first 24hrs. with 8oz. of Alimentum in.  This is a good amount, but because of the events of the day before , prior to the NGT, we are no longer at a baseline  and we’re not sure if it’s the Alimentum slipping him downhill or simply his body trying to recover from the previous days’ events.    

We are optimistic of his progress, Wednesday morning his cheeks are rosy, he slept well overnight, wakes up ready to play, and enjoys some playtime  when his brother visits.    So, we began to discuss the next 24hrs.  at rounds on Wednesday morning, we express and discuss how we feel we need to increase the Alimentum he is getting- because of the symptoms he is presenting with that are unclear if they are building FPIES or leftover from the stressful beginning days.  I am hopeful it is just the stress, and am encouraged that we haven’t seen any of his “classic” building symptoms of pain, agitation, decreased appetite and disturbed sleep.  But I am troubled that we jumped right into lethargy, pallor and cyanosis.  But, even though these are seen during an FPIES reaction (acute or chronic), they alone (without vomit or diarrhea) are not defining criteria; and especially not now for little man because of the stress his body has been under.   So, we press on as planned but decide that we should continue to increase his doses to see if that makes the muddy picture clearer.  We will increase to 2oz. Ali RTF + 2oz. hemp milk for the next 24hrs. 

He'll eventually get hungry enough....

Little Man is admitted for the formula trial, and the hopes to find him a supplement to his hemp milk formula.   We have decided on Alimentum RTF for that trial because although it contains casein (dairy) hydrolysate and tapioca starch as well as a tiny amount of soy oil, and also DHA/ARA that is becoming common place to have in formula’s….it doesn’t have corn.  And believe it or not, all of these risks are less than his risk to react to corn.  He has become more sensitive to corn instead of less over the past 2yrs., but the hope is that he is becoming less sensitive to some of his other original triggers.  The trial is a challenge and will be done in the hospital.   Little man is a chronic reactor (delayed reactions) so we also want to document any symptoms he has along the trial, even if they don’t lead to an acute FPIES reaction.  We get admitted on Monday and get all settled in, reviewing the plan with the doctors, and attempt to begin giving him the formula.   We decided a 1/2oz. mixed in 3oz. of formula may disguise it enough to test it out.   I was wrong, there was no disguising the taste of this formula and little man noticed it immediately and was not happy about it!   It is a long afternoon as he becomes more and more hungry and frustrated, and keeps asking for his bottle – to which we give him the 1/2oz. Ali RTF and 3oz. hemp milk mix.   His daddy arrives for the night and I am hopeful a new approach will help.  Daddy tries Ali hot, cold, over ice, in a special sippy, through a straw little man drinks about few swigs before he realizes and then refused.    We try to be optimistic that he even took the few sips but we are concerned over his refusal and hunger.  It really isn't something we are comfortable with, it isn't why we are here (in the hospital)

We request to speak to the Pediatrician.  We've seen little man starve himself before and we've watched him spiral down fast....of course this is after a reaction when he's already very sick; but we're still very worried because of his yet unexplained hypoglycemia (low blood sugar) issues he's had in the past.   If they have to give him dextrose to keep his blood sugar stable, he may not feel hungry and the dextrose (being from corn) could "muddy" the trial (he's had it in the past but with questionable symptoms).   So, we are advised that "he'll eventually get hungry enough and eat".   Well, I know that is an old saying for "typical" kids who are being picky; but it doesn't work that way for kids whose food causes pain.  We have had hospital admissions for this very reason, "he'll eventually eat when he gets hungry”, they feel he will eventually accept the Alimentum mix if it is his only source of food.   We do not agree with this recommendation because of what we know about Little man but we agree to give it overnight.  The main concern beyond him being hungry is that this isn't what we came for- to starve him, to dehydrate him, we came to challenge a formula- to find him food- not take it away.  

Thankfully, his daddy does get him to "dream feed" in the middle of the night- he takes some of the mix in his sleep.  THAT is a good sign and we are hopeful; but it wasn't enough.   He has one wet diaper in the morning and then not again all day, his lips are getting dry and his eyes are looking sunken.  And he is NOT happy.  He refused any attempts or mention of the bottle….and we fear he is gaining mistrust in something he has trusted for so long- his one stable food source, and a true comfort item.   By the time the doctors rounded (late morning) it now had been 22hrs and he's had 6oz. to drink (1.5oz. of Ali RTF).   

We discuss the nasogastric (NG) tube.  Our GI discussed this with us before we came to the hospital- how we may have to do the trial with the NG if he refuses to drink enough; we would then know if it was "safe" and see if he would drink it (while he maintained his NG); if he would not drink it; we would have to do a Gtube (surgically inserted into his stomach) to assure he gets the nutrition he needs.   This does seem drastic when he DOES eat by mouth, he takes his bottles VERY well and can drink up to 60-70oz./day without a problem, it is adequate in calories but lacking in some nutrients.  All he needs is supplemental nutrients- that he can DRINK.  But we have searched and not found these in 2yrs.....

This hospital stay was already becoming more complex than we had anticipated (and we anticipated complexities!).   So, right now, we need to focus on today.   Today, he needs nourishment.  Today, we need to find out if the Alimentum RTF is "safe" for him. Today, we need to make the decision to have the NG tube inserted to give him Ali RTF through it and let him have plain hemp milk in his bottles for his comfort.  

We make that decision and we head to the procedure room with the nurses to insert his NG tube.   After it was placed, we had to get it checked on xray to be sure of the proper placement, during that time- we offer him a bottle (of plain hemp milk) and he, thankfully, accepts it and instantly starts to (finally) feel better and drift into sleep (for a nap)….HUGE sigh of relief.   He's been through SO much already and we've barely just begun.  

X-ray showed that the tube was not placed in his stomach, so back to the procedure room we went.   This time was successful and the first feeding of 1oz. Alimentum and 3oz. Hemp milk went in around 3:30 on Tuesday.   The plan now is to continue "feeds" of 1oz. of Ali + 3oz. of Hemp milk every 3hrs for the next 24hrs. and see what/if symptoms present.  

The other thing that the X-ray showed is that his PICC line is not sitting in a good place, it is decided that it is no longer safe to use for TPN.   We will keep it placed in case he needs it for hydration while we work through this trial/challenge but plans are made to have it removed soon.  

Alimentum RTF Challenge, are we ready?

Ok, so if you follow my blog you're probably wondering why I haven't updated.   I'm not superstitious by any means but there is something about FPIES and writing something out....I like to be sure before I put into words what 29,000 people could potentially read.   And we've had a busy and sometimes muddy 6weeks.  (this post is backdated to reflect the accurate timeline)

The decision is made to challenge Alimentum Ready To Feed (Ali RTF), it is a challenge because he has reacted to both casein (dairy) and tapioca before...although we've never been sure if his tapioca was FPIES or dissacharide deficiency related, we've simply avoided- it made him very, very sick and necessitated a hospital admission to recover.  We plan for the hospital challenge, to observe for both acute or chronic reactions, since Little Man has more chronic reactions than acute and this isn't a food we can shelve for varied symptoms, we need to be sure we looked at everything and that his symptoms are logged carefully if needed to look at them retrospectively.

We prepare for the hospital stay, a planned 3 days to assess all symptoms and tolerance.   We plan on 3 days but we prepare for more- knowing little man always seems to throw us some curve balls.    The days before, we start to get nervous, nervous about making him sick, nervous about his failing PICC line and what we'll do if this doesn't work.  The PICC that was scheduled to be converted to a port just a week prior, a decision based on his inability to tolerate the food trials we had done at home for the past 2months; but a line infection scare left us rethinking things at the last minute, deciding that the benefit of tolerating the Alimentum RTF is worth the risk of a reaction being that it has been 2yrs. since he has had a dairy derivative (in a similar formula).

Excited? Yes, that if he passes Ali RTF- we could have a supplement to his hemp milk formula and we could just BE- just take food trials longer and only when he's ready instead of pushing him.   We could make plans easier, we could see little man at a baseline for more than a week before we move on to the next step.   We can just breath.

Nervous?  Yes!  Little Man hasn't had a food pass since the summer of 2010!  His body hasn't accepted a new food for 18mo.! (another post).  Will it now?  If he isn't ready for dairy or tapioca, do we risk re-sensitizing him and having to wait longer to trial it again?  And of course, there is the fear of making him sick and having nothing to build a formula from.  And....will he even drink it?

Why Alimentum Ready to Feed, Why now?

Alimentum Ready to Feed (Ali RTF) is a casein hydrolysate (pre-digested/broken down) based formula that is NOT in a corn syrup base.    In fact, it is completely corn free!  It is in a tapioca based syrup.

Hydrolysate formula's are considered hypoallergenic because they are a broken down proteins, broken down enough so that many (most) allergic people can tolerate them (dependent on the severity of the allergy) they are typically the first stop before proceeding to an elemental formula when allergies are presenting in an infant.

So, why haven't we used it before?   Little man's dairy allergy was severe and sensitive, and he reacted to Nutramagin tried two separate times.   Once we discovered he had a corn allergy, we wondered if he had reacted to the corn in the formula or the dairy (casein hydrolsate) but after speaking to the allergist who diagnosed him, he felt his symptoms with dairy and soy- through breastmilk and other formula's indicated he had both Milk/Soy FPIES and solid food (grains) FPIES and we needed to avoid dairy for the time being.  There was no weighted need to risk making him sick when we knew small exposures of dairy resulted in vomiting and diarrhea.   Once we had him on elemental formula only for 5mo. with no improvement (and worsening) of symptoms, our suspicions of the corn allergy were confirmed and I began to come up with a homemade formula.   I used tapioca starch as the carbohydrate/syrup base and this resulted in a myriad of symptoms which ended in dumping diarrhea that dehydrated him and landed him in the hospital for metabolic acidosis.  Alimentum RTF was not an option for more reason than one.

So, I began making him a homemade formula, with hemp milk and hemp protein as the base and safflower oil for added fats and arrowroot starch for just enough carbohydrate source.  But it was lacking in adequate B vitamins (being a plant based protein, although a rich protein itself), a few other micronutrients and the biggest missing nutrient was Vit.C.  Our first trial was peaches, for the Vit.C.   Before we took away food at 7mo., peaches were something he enjoyed.   Thankfully he passed peaches but he wasn't always eating enough of them for his growing needs.   We spend the next year trying to find foods or vitamins that he could tolerate to fill in the gaps that the homemade formula had.   He continued to grow and gain weight and develop well; but with repeated reactions and intestinal damage (from us having to push through food trials to find him more nutrients);  often malabsorbing following a reaction, he struggled to maintain above the line.   We challenged soy at 18mo. in hopes to give him a formula (Ross Carbohydrate Free - RCF- is a non-corn syrup base formula) but that was a terrible fail resulting in villi damage to his intestines such that he lost weight and protein stores quickly, an endoscopy revealed the villous atrophy and TPN (IV nutrition) was promptly started.   That was over a year ago.   He stayed on TPN for 5weeks and healed his intestines.   We challenged a vitamin, probiotics, more varied foods, and he continued to have symptoms that would not allow us to continue giving him the foods - how do you keep giving a child with severe anemia foods that cause blood in the stool?   How do you keep giving a child a food he refuses to eat because it is causing so much pain and disruption to his quality of life?   How do you give a child a food that makes him vomit?  We don't, we can't....symptoms like these are too hard to push through with his fragile system.   But surely there is more foods his body will accept?   Something must be out there?

In the spring, a cross contamination reaction while we are out of town scares him from eating his peaches and within 4mo. he develops full scurvy, which seemed to come on very suddenly in conjunction with a trial of a new probiotic strains.   That was this past summer.   That was when it was decided to stop searching for foods to fill in his nutrients and to give his gut a rest, his body a time to catch up on growth, and a PICC line was again inserted for more TPN (IV nutrition).  

Now, 6months after TPN was started, and after catch up growth and gut rest- his risk of line infection/sepsis remains high, as well as the risk of the damage to his kidney's and liver, and his gut is not healed- repeated follow up endoscopies reveal continued villi damage, and even though he had adequate weight gain, he has stopped gaining weight, again.   The discussion is that TPN is no longer worth the risks and not meeting his needs.   We must do something different.

So, we decide on Alimentum RTF and we decide now is the time.

Buying time....

So much has happened in the last few weeks, we are still trying to process through everything (in a place where changes are still happening).    The last update I gave was that Little Man was scheduled to have an endoscopy and covert his PICC to a Port (for IV nutrition).    Little Man has been on IV nutrition since Sept., 6mo. now.  We gave him gut rest and a chance to catch up- on nutrients such as Vit.C and iron but mainly on growth- he gained 6# on TPN!  He had 3mo. gut rest and then we tried zucchini, which didn't go well - not a full reaction but didn't see the benefit to push it because it was making him sick, FPIES or not- we needed to set it aside if we wanted to trial something else.  Such is the way it has been with too many foods for him- they cause symptoms that could lead to FPIES, or not, but he is not tolerating them and the benefits do not outweigh the risk.   By not tolerating them, I am not referring to a reflux flare or a rash or even some mood changes- I am talking about a whole different child emerging, with a wide range of symptoms (depending on the food), with random throwing up and questionable stools and just a whole heap of a mess of a child that is surviving each day....and of course not to mention that he shuts down to eating when he starts feeling like this and associating the pain/discomfort/vomiting with the food. Despite that, we pushed through several foods and got no where, except increased vomiting, no weight gains, a dramatic drop in hemoglobin necessitating a blood transfusion, again...after almost 4 weeks and with that drop in hemoglobin- we waved the white flag....we needed a time out.    An evaluation on what was going on and where we were heading.

With the scheduling of his surgery for a port, we wanted to be sure we were making the right move.  We called the allergist we recently started seeing and asked for an appointment before the scheduled scope/surgery - she agreed and got us in.    We also got an appointment with our GI.   As our Allergist put it well, "there are too many cooks here and no one is following the recipe".  We needed to get everyone on the same page before we put him through surgery!   Well, as if in a twist of fate, little man developed fevers 2 nights before his scheduled surgery- and we found ourselves in the ER being evaluated for another line infection.   In the ER, he was found to have increased white cell counts and he vomited everywhere....now I was sure he must have a line infection (sepsis)....but after waiting for 48hrs to see if/what cultures would grow and finding nothing- we suspected he actually had an FPIES reaction - although we still do not know to what!  We spent 2days in the hospital and his surgery was cancelled but his scope procedure was kept.   The scope results initially looked good- and we were hopeful we were finally going to see healing but the next day when the biopsy results came back, we found we were wrong- he continues to have blunting of his villi.   Although they are not as bad as they have been previously so we are hopeful they are healing, but healing takes time....

With the scare of a line infection, surgery was cancelled and then further discussed- was this the road we really should take?  At this point, what are his risks of being on IV nutrition vs. his risk of trialing a formula?  Either a modular non-corn elemental (we've searched and struggled for 2yrs to find that!) or Alimentum Ready to Feed (RTF). The question is- the risk of surgery and continued TPN or the risk of reaction to Ali RTF?  Which one is a greater risk?    With catch up growth established, nutritional status stable, line infection negative, and - most importantly- 2years since any trace of dairy protein was ingested and reaction from, we decided to trial Alimentum RTF.

Alimentum RTF has a casein hyrdolysate (a hydrolyzed "pre-digested" milk protein), but even more importantly for our corn allergic little man is that it is the one of few formula's NOT in a corn syrup base.  It has tapioca starch as the base.   Little man has previously reacted to tapioca starch but it has been 18mo. since that and we have never been sure if that was from his disaccharide deficiency or if it was an FPIES reaction- it was severe and he was hospitalized because of metabolic acidosis from the dehydration and dumping diarrhea.   So, this trial is a challenge - a challenge of his FPIES, a challenge of these ingredients.  It doesn't come without risks but we weigh the risks of keeping the IV nutrition and this challenge with his GI doctor and we decide it is worth the risk.  It is time, we have bought time by moving away from all dairy derivatives at 6mo. of age when we realized he had more than "just" an intolerance to it as he continued to get more sick as he got older and introduced more foods.  We have bought time by having him on TPN (IV nutrition) for the past 6mo. to heal this gut, give him catch up growth, and make him stronger.   His body has shown us with recent trials that he still has high re-activity to new foods but we remain hopeful that this could be something his body would accept.  

For us, FPIES has been about doing our best to keep him thriving while buying time....