Labs follow up

When we saw our pediatrician a few weeks ago, we had decided that the Hemoglobin of 8 (normal is 12) was cause to watch things closely.   That is until 2 days later and the Ferritin (iron) levels came back at an all-time low for him, at 2 (normal is above 24, but he's rarely been that high ever). So, our GI changed the plan and we went ahead with the IV iron infusion as he was symptomatic and we really wanted him to feel better and stop that cycle (while praying the new ProViMin formula was doing it's job - not only restoring his levels but not reacting to it causing him to dump the proteins (and malabsorb vitamins/minerals).  The re-check was this Thursday- a week after getting the IV iron and 2 weeks after his last check.   

And it was GOOD news!!  His hemoglobin is now up to 11!! From 8 and within a week- this is a good sign that the IV iron helped and hopefully that his body isn't reacting to the ProViMin.   His Ferritin came up a whopping 17points and is now 19!!!  WOW!  Although this could be a "false" rise as it will appear higher right after IV iron therapy.  I am SO glad we got the IV iron for him, despite the week + symptoms he has been having from the corn in the dextran the iron is delivered with, his hemoglobin is up- he is feeling better, appetite is improved, and sleep is improved. Although he is still tiring easily and having mood swings (usually only when he is overtired and a lot more likely in the evening) that are not at his "baseline"....so I am still playing the guessing game to what is causing that.  I don't know that it is related to food; for one thing- we aren't doing any big trials....except the ProViMin.  

The other thing that I am worried about is another lab that we got checked, from an appointment we had a few weeks ago with the geneticist - a recheck of his carnitine.   He is low again but not low enough to trigger a clear deficiency so we haven't gotten a call back but I am wondering what his symptoms now correlate with this lab value....and what we should do about it.  The geneticist did say he wanted to supplement it (although admitted it may be difficult finding one that is corn free) because he fears he just isn't getting it in his diet.   I'm not sure why the formula wouldn't have it,but know his hemp milk doesn't (carnitine comes from meat and dairy sources).  We still haven't gotten to the bottom of this and it is either simple (not getting the source) or it is complex (a metabolic disruption disorder).  For now, we need to concentrate on finding a safe source of carnitine for supplementation as carnitine has a role in gut health.  

Something isn't quite right, just not sure what it is or if we are moving in the right direction with each day or getting further away....we need some follow up's with GI and the geneticist and he is (over) due for his 3yr.well child visit.  But, I just want to enjoy being at home and summer starting and spending time as a family, and celebrating his brothes 5th birthday, and going camping....and FOOD trials, and not dealing with medical issues and appointments and more lab draws and interfering food trials for supplemental trials.  So, I guess I've been playing Ostrich a bit.   Maybe tomorrow I'll start to make some calls....for now we're going with the flow- taking time to cuddle and lay low when he needs it and making the most of when he is feeling better. 

IronMan

Little man got his IV iron infusion 2days after his 3rd birthday at the PITC (Pediatric Infusion Therapy Center).  It is a 6hr.infusion because the iron has to be infused with a sugar- sucrose or dextran.  We've tried the sucrose but that has given him bloody stools.   FPIES is defined as a delayed food allergy of the gastrointestinal tract, so doctors often struggle that allergens via IV or on the skin, or even airborne, could cause reactions.   We've seen them all when he is exposed to corn.  It makes me wonder if he will ever outgrow his corn allergy.....  We keep learning as we grow with it, on ways he is "corned" (as it is called in the corn allergic communities).     Did you know that many corn allergic can never go to a movie?  or shop at Target?  Or walk through the detergent isle in the stores?  The strong corn smell is too much and induces an allergic reaction.   I think I've seen these in him too....my instinct tells me I have....but I'm still trapped in that "that is crazy" feeling fighting my instinct.   This past weekend, hubby bought some scented laundry detergent- which I have been avoiding but didn't tell him that- Little man's color was very pale that evening as the house was engulfed in fumes from the laundry scents.  Today, his color was off again - he hasn't eaten anything new- but hubby used some strong cleaner on some stubborn spots on the living room floor and also on the kitchen sink.     

Now, most of these reactions don't completely interfere with his quality of life and can go almost undetected (hubby doesn't notice them like I do); but it is hard to differentiate if the symptoms are from a new food we are trialing or being "corned" so we have to be careful --- even if it isn't going through his gut. 

So, the IV iron sucrose is a 45minute infusion...would be so much easier if he could have that but it is not safe and the benefits do not outweigh the risks.   The IV iron dextran produces symptoms but they are manageable and the benefits of the much needed iron outweigh the risks of corn-tamination from the IV dextran.  But it's been a long week....working that dextran out of his system is taking a long time.  He isn't sleeping well (won't even sleep in his bed), has stomach aches, doesn't want to eat but will take his bottles (thank goodness), is tired a lot- achy maybe? touchy and moody.    Over the week, we played the guessing game- did he get something, is it from this or that, is this getting worse or better, is his iron still critically low?  But now it is clearer to see that it was all from the dextran and I'm feeling de-ja-voi, that we've been here before and even discussed it with the GI who agreed that we need to try and avoid the IV iron (ie, not let his iron stores get so low so that he needs it).   But with a Ferritin of 2 (normal is 24 and up), we had no choice unless we did a blood transfusion.  

We got to the PITC and Little Man knew exactly where we were....and wanted to go home.   He was very brave though and got distracted by watching "Cars" while we waited for the lab to show up to get his IV started.   We were happy to see one of our favorite nurses there too.  We were giving her an update on how he has been (they love to see how much he has grown and changed!).  She was talking to him and trying to distract him as they got the IV ready and he had his SuperMan pants on (pants with a patch) and she asked if he was Superman.  I told her how one day, he looked at me and said "Sam Ironman, me Ironman?" ;)   She thought that was cute too...and replied...."well, today he is".   

The day was long but hubby and I split the "shift"- I take the first hours where he gets the IV and gets settled in and then hubby takes the rest, where they can play and nap and get through the long 6hr.infusion.

Anemia....again

Little man has been hovering over his spiral for a few weeks now and helping him on our own has been just out of our grasp- right at our fingertips but not enough for us to get a good hold on it.  

This past weekend, he was really showing signs that his anemia was back and his Gtube was really hurting him.   So, by Sunday we decided we needed to call in right away Monday morning and get him evaluated further- for both anemia and Gtube issues (not that they are directly related). 

We call and leave messages with the GI and try to get in to see if his Pediatrician on Monday.  There are no appointments available but he can see him on Wednesday morning and in the meantime, the GI ordered for him to have an Gtube study (barium contrast upper GI) and some lab work to assess his anemia.    So, Tuesday afternoon was spent at these appointments.  

We got some of the results that evening, not good.....Hemoglobin (normal is above 11) is back down to 8.   Not good (down from 12 a few months ago).   It explains a lot though, and was what I expected - as he has been tired and had disturbed sleep and now lately, his lips are the color of his cheeks, which is not good because his cheeks are not rosy.   

We go to the Pediatrician appointment on Wednesday morning and he assesses that yes, his skin/lips/etc are  pale but his heart rate is good and his activity level right then in the office was good.   So we decided that at this time, it was worth trying to see if the ProViMin would  help him catch up and replenish his stores.  We scheduled a follow up lab check for 2weeks and said we'd be in touch.  The other good thing about his appointment was that his weight is UP!  For the first time in months, his weight is UP!   Alimentum RTF formula did nothing for his weight and just a week on ProViMin and he's gained a pound a half! He is now 31#8oz.    We all agree that we don't want to see him HAVE to get another blood transfusion and would prefer to avoid IV iron infusions as well.   IV iron is infused with a sugar - dextrin....which comes from corn.  It doesn't go through his gut but his body still reacts to it- so we would rather avoid it....if we can.   

Later that afternoon, the rest of his labs came back- another lab they checked was his Ferritin, which is the iron stores in his blood- we needed to find out if his hemoglobin was dropping because of blood in his stool/losses alone or if his stores were also affected because the last time they were checked, they were already low.   Now, they are very,very low.   We are going to have to intervene and not wait to see if the ProViMin will restore his stores quickly enough.....realizing that his iron stores are so low, we know we will need to do something more aggressive to help him.  

His GI called this morning and confirmed those are her thoughts and recommendations, so now we are waiting for her to connect with the Pediatrician and come up with a new plan (his plan yesterday before the Ferritin levels were back were to do a wait-and-see approach (to which we agreed to).   But now realizing that his iron stores are so low, we know we will need to do something more aggressive to help him.  

The GI doctors also mentioned that she is really upset that he is bottoming out again, that she doesn't understand why he didn't tolerate the Alimentum RTF- or why he "seemed" to tolerate it for a few weeks and then didn't.   I clarified to her that I don't feel he ever did tolerate it, we just wanted him to so badly so we kept pushing it -- and that he CAN be stable if we didn't have to keep pushing foods that his body is not ready to accept- full blown FPIES or not, he goes backwards faster if we push him when he shows us signs that he isn't tolerating something- if we push him just to get to vomit because that is the only evidenced based signs.  IF the ProViMin continues to work out, I don't want to push him - I want to just take things slowly because he should be getting all he needs in the ProViMin and if he needs gut rest or time to heal or a food that is not tolerated taken out of his diet- then we need to listen to his body.  Without a source of complete nutrition, we have not had that luxury.

The GI starts talking about long term hospital admissions, extensive tests and consults at other facilities with other more FPIES familiar GI doctors....she admits she is frustrated and losing her patience and needs to just know if his gut is use-able or not, or if he needs long term TPN to thrive....   

These thoughts overwhelm me and we ask all prayers that Sam will tolerate the IV iron infusion and that his body will have the catch up it needs and he can thrive on the ProViMin, and we can take things slower.   

Oh, and the tube?  Both the Ped and GI do not want to discuss taking it out yet....even though surgery has said that is their recommendation.   One good thing is that it has stopped oozing and draining and we noticed a significant correlation with the Alimentum feeds and intolerance to the increase of the gtube drainage.   

"I am SO Two!"

Reads his t-shirt, handed down from his oldest brother, worn by each with such true meaning.  There is something about being two!

Little man had his 2nd birthday recently, but that is not what this post is about- that will come soon though (as I'm still working on organizing/downloading the pictures...hey, we've been a bit busy!). 

Just a week after his birthday, and we are finding ourselves sinking into anemia traps again.  His hemoglobin seems to have spiraled down quickly.  The lab draw reveals a Hemoglobin of 6.1 and Ferritin stores are quite low again as well.  There isn't enough iron being absorbed to make iron rich hemoglobin with.  All that we know right now is that it is a combination effect of:
1). colitis flares with food trials as evidenced by blood in diapers for 1-2days following small ingestion's of foods, or triggers (sucrose in IV iron 6 weeks ago) and unknown days of microscopic blood not visible. 
2).  Not enough Vit.C to absorb the plant based source of iron (despite his hemp supplying almost 3x what his body needs)
3).  Missing micronutrients (B vitamins) to synthesize iron.
4). Acute inflammation following reactions
4). Gut flora involvement??

Peaches supply Vit.C but he doesn't eat them consistently enough to get enough of it from them.   We just started B vitamins and it looks as if he is tolerating them well (we are 1 week in!); so once we restore his iron levels - will the B vitamin supplementation to his vegetarian diet be enough?   We can only hope. 

But right now, the question remained if he needed a blood transfusion or could proceed to straight IV iron infusion.  And for that, he needs to be evaluated.   We say good-bye to Daddy....which he is not happy about and head to the Pediatric Infusion Therapy Center and await the Physician's Assistant to come and evaluate.  If his heart rate is too slow, or too rapid- they will need to do a blood transfusion before they do iron infusion.  

It takes 10-15minutes to get from our house to the hospital parking....he's been screaming the whole way- more like yelling.  As if he is saying "I know this drill and I do NOT like it....you don't take me with when daddy is home unless it's to the doctor, take me back home, take me back to my daddy".   He kept trying to wipe his tears, they were just an annoyance getting in the way and he was trying to tell me something.    There was a point, as we pulled into the parking garage that I just wanted to turn around and go home.  What would be the point in his if he is going to be screaming like this?  But, no- he needs this, he needs to be evaluated and he needs treatment.   Wasn't he just so tired a few hours ago that I was carrying him around the house?  Where is the energy to have this tantrum coming from? 

He continues to carry on, stopping for a split second to pout his lip as we enter the parking garage.  I breath a sigh of relief- maybe he's resigned and we can walk into the hospital without them thinking I am hurting my child!?   Nope, he takes a breath and begins again.   We go up to the infusion center with little breaks from the objections.    The nurse tries to take vitals, which only makes him more upset and clearly accurate assessment of his vitals is not going to be possible in this state.   The physician assistant comes in to exam him and the tantrum escalates....does he even remember what his tantrum is about?  No, but he knows exactly where we are at.  

I have witnessed tantrums to this caliber before but not from him.   He is adamant that no one is coming near him, and he barely will let me hang on to him- he is not happy with me either.   I called his daddy and said "you've got to come, he won't calm down, he needs you".   I knew he would be happy enough to see his daddy that he would at least calm down and catch a breath so we could better assess things.   In the meantime, the PA and I discuss his symptoms and observe the energy it is taking for him to have this tantrum.  It is decided that we can hold off on a blood transfusion and proceed with the IV iron.   But it is already 3pm in the afternoon, the IV dextran takes 6hrs. to infuse and the Infusion Center closes at 4pm. 

They ordered IV Iron Sucrose.   The one he got SO-SO sick off of, the one no one understands why he reacts to....a corn sugar injected into his veins where T cells have to encounter it at some point?  I don't know why it is hard to understand but I do know what we see happen to our little man.   I wait until his daddy arrives a few minutes later and ask if he would want Little Man to receive the IV iron sucrose.   I barely finished my sentence, and he says "NO!....absolutely no way is he getting IV iron sucrose, we will not put him through that again- he was so sick".     The decision is noted and understood, we will return in the morning for the 6hr. IV iron dextran infusion.  

We all go home exhausted.

IV Iron Sucrose = corn

Little man has had IV before:  IV hydration, IV dextrose, IV nutrition.   His iron has been administered via IV and his anemia responds well to this, restoring his bodies iron stores to make oxygen rich hemoglobin for energy and brain health.     

Little man has had IV iron Dextran in the past.  Dextran is a sugar made of many glucose molecules.   Sugars for IV (detrose, dextran, sucrose) are most commonly derived from corn.   We have always seen some symptoms with these IV solutions, but never very significant.  Nothing significant enough to over-ride his need for receiving the solutions.   It is always a lesser of two evils approach.   IV dextrose brought him out of acidosis following tapioca fail; IV nutrition healed his villus atrophy, IV iron dextran corrected his anemia.   IV iron dextran takes 6hours to infuse.  There is a shorter version: IV iron sucrose.  

Sucrose is a sugar made of fructose and glucose molecules. So, it is a more complex molecule, that the body will still have to break down.  But wait, he has a gut allergy- right?  Yes, FPIES is a food allergy of the gut.  The gut takes the "hit"- as if there were hives or eczema happening on the surface of the intestines, or anaphlyaxis of the stomach.  But the mechanisms are thought to be T-cell mediated.  T-cells travel through the lymph system.  T cells are not limited to just the gut- that is merely where they are concentrated and trained to recognize for this type of allergy.   But Tcells also respond to skin- look up Atopy Patch Testing.   Also, read here: NonImmunoglobin E-mediated Immune Reactions to Foods by Dr.Spergel where he illustrates how learning about Tcells from Atopic Dermatitis patients has furthered understanding of this immune mechanism of food allergy.

So, dextrose is from corn, dextran is from corn, sucrose is also from corn (isn't everything?).  IV iron sucrose takes 45min. vs. IV iron dextran's 6hrs.  We know Little Man has symptoms from the iron dextran but we are suspicious that it is just draining to withstand an IV poke, followed by a 6hr.infusion.  It takes him a few days to re-coop from that.   We decide it is worth trialing the iron sucrose, to see if his body responds any differently, or at least see if the less time will be less draining on his system.  

We move nowhere while getting IV iron- there are too many residual symptoms to know what is related to what, and it takes too much on his body.  So any food trials we are doing, have to stop during IV iron. We are supposed to get it done two times a week, but with the 6hr.infusion, it is just too draining.  A 45min.infusion may give us that 2x/week and get his iron restored so we can take those symptoms, and the anemia out of the symptomatic picture.   It's worth a trial.  It's always all about the trials.  

Once again, he is fatigued during the IV placement, and lab draw- too tired to even fight me.  We get through the 45min.infusion and come home to relax.  I check his labs online, and see his hemoglobin is now up to 9.5 (from 8.5)! It rose a point with his previous infusion!   I am thrilled, but wait....that means the recent fatigue isn't from the anemia?  It's on the rise, a 9.5 is a GOOD hemoglobin for him!  (normal range is 10.5-13.5g/dl).   A look further down the list of CBC and I see his Leukocytes are low at 5.1 (normal range 6-11 x 10(9)/L) and his Platelets are high at 569 (normal range 150-450x 10(9)L).  These are his "signature" post-reaction labs.   Thankfully, they are only marginally away from normal range.   They can indicate either inflammation or infection in the body.   He isn't sick, but he is re-cooping from a mystery reaction.....now more clear, seeing these labs, it was a reaction- we just don't know for sure what to.  

We expect him to re-coop nicely, following a rest on the iron infusion day....hoping his hemoglobin levels respond nicely again to this infusion.  Instead -  he continues to decline.   Is he still re-cooping from the Saturday reaction?   Maybe.  But he is going on the wrong direction.....from bad to worse.  Why? And why is he so sleepy?  So fatigued? He seems flu- like, but isn't running a fever, has low muscle tone and is getting dehydrated looking, losing weight, and very pale.   His diaper changes are green, slime, mucus, and blood specked, and very randic smelling.  An FPIES family knows that reaction smell- the kind that you can smell from upstairs when he is downstairs!  The kind that takes 8hrs.to clear from your house, even though you wrapped up the diaper and put it right outside in the trash.  Yep, that diaper.   But, how does that happen if the sucrose (corn) did not go through his gut?   I suspect it has something to do with the involvement of the lymph nodes in the colon.   At Little Man's first scope, lymphnodular hyperplasia was visualized, it has been clear on every other scope but I suspect this lymph system would be "processing" those recognized Tcells- and the evidence is in that diaper.  

We hold him all the time for a few days- we contemplate bringing him in to see his pediatrician....we know there is little that can be done, and he is eating/drinking, and he's not throwing up, he's just so very tired.  This is reminding me way too closely of his post-corn fail last July...and I'm getting nervous- when will he turn the corner?   Two days later, with little change and no improvements, we try to get him scheduled with his pediatrician, and are unable to that day.  We got an appointment for the following day, and his pediatrician shares our concern that he looks "punky" and not his usual self.   He assures me his ears and lungs are clear, his breathing is steady, his blood pressure is stable.  We just need to wait it out, watch him closely, push fluids/his formula, the TLC we've already been doing.  He assures me he is on-call and wants to see him again if he does not improve.  

Already he has been making improvements that day, so we are hopeful he will continue to make improvements everyday.  Thankfully, he does.  Each day has gotten better since then and by this weekend (Happy Mother's Day), he was finally talking, smiling and playing again.   His energy is still low, and he's still re-cooping but making great strides the past few days as well.   We have some ground to make up, as he lost almost 2# over the past few weeks.   His appetite has been picking up daily, and he does well as long as his probiotic is in his formula (getting small amounts in every bottle). 

Little Man's daddy and I are sure this downhill slide wasn't as much from the reaction as it was from the sucrose- a full body response- sparing his stomach and small intestine.   We will not plan to do IV iron sucrose again.  It remains to be seen if we will need to go back to IV iron dextran.  We are hopeful to trial some meat soon instead.   How about Bison?

More Probiotics?

Little Man is tolerating the Kirkman labs CD-Biotic, it is the lactobacillus rhamnosus, lactobacillus plantarum, and saccharomyces boulardi.  But something isn't complete with this probiotic.   We are shooting in the dark-does he need additional strains? Every time we try to add the a bifida strain, we have issues.   Switching to ProBioGod caused FPIES reaction building like symptoms, anda  switch to a new probiotic with multi strains brought on a cough, quickly followed by fevers.   The fevers may have been exacerbated by some coconut I was giving him.   We have trialed coconut in the past, the trial got interrupted and we haven't made it fully back to it yet but have started a few times with no adverse reactions.   The only problem we seem to run into is that he will eat it with gusto the first day, and then not want it the next.  So, like with a growing list of foods- we don't really know if it is truly "safe", because of his delayed responses- we need to trial a food for 10-14days before calling it safe.  

Coconut is a functional food.  It is a prebiotic- food for probiotics.  Coconut is a natural anti-fungal.   Dr.Jyonouchi has said an anti-fungal (Nystation or Diflucan) helps some Protein Intolerant children when starting a probiotic.   How does it help?  I have not had time to fully research yet as I do like to know the what's and why's of things- especially since we are getting conflicting recommendations from his doctors.   Our trusted GI doctor is worried about doing Nystatin prophylactically with concerns that he would not tolerate it.  A valid concern.   Dr.Jyonouchi often prescribes it prophylactically.   With e-mail discussions with her, it sounds like it helps control the fungals (the "bad" gut bacteria) while the Probiotic (strengthening the "good" gut bacteria) does it's job.  It helps even the playing field in correcting the dysbiosis.    I have also heard of many kids having success with doctors who also prescribe an antibiotic during this "reseting" time.   An antibiotic can kill off some "bad" gut bugs, but it is more detrimental to "good" gut bugs.   But with the right combination of therapy, in particular if you know the gut flora of the child, it can help with the dysbiosis. 

We are worried he will react to Nystatin.  He is having problems with the probiotic- it plateau's throughout the day- when given, it has an almost immediate effect but we are seeing it wear off 4-6hrs. later.   I did try and give it to him 3x/day but it seemed like too much?  So, it seems, what he needs is something to help it- something for it to feed off of so it can reside a little longer and have "strength" to do it's job inside his intestines, alongside the resident gut flora.   I decide to go back to coconut.  He needs something.  

He's been fussy that morning, so he sits on the counter while I made some coconut milk, with intentions to put a little in a few of his bottles (maybe the one he takes around the probiotic dose?).   He is asking for some of the coconut manna (a coco butter that is the "meat" of the coconut and can be melted down for various things).   I give him some coconut manna on a spoon- he loves it.  "Yum, yum, more, eat".   Nothing makes my heart sing more than hearing him say that, as I watch him enjoying a food -- especially if it is a food that is safe.    He lays down for a nap shortly after that and when he wakes up, he has a fever and his cough is progressing, he is whiny and clingy.  He doesn't have any FPIES symptoms, just increasing of symptoms we were beginning to see.  I don't feel it is from the coconut proteins but did the anti-fungal components of coconut push him into an extreme "die off" reaction from the probiotic?   It is possible.  

Dr.Jyonouchi has spoke of her experience of probiotics having an effect on upregulation of the immune system in protein intolerant children.  Which, from what I understand is the same thing as what is referred to as "die off" in complimentary medicine.   The immune system is activated because of the "toxins" - by products of "bad" gut bacteria breaking down and being released into the blood as they are broken down and leaving the GI tract.   The various effects of what happens as these toxins leave the body is different in each person (and parts of why this term is not recognized in medical terms as these effects can varied and difficult to point to origin of gut bacteria)...those that live it, see it from a different perspective and many times it takes experience to really help us to understand something.  In a well functioning body, these toxins leave the system almost un-noticed, or with only slight ill effects.   In a susceptible person, the effects can be intense.  FPIES children (Protein Intolerant children) have over-reactive immune systems.   Food is perceived as toxin, even gut microbes can be perceived as toxins in the gut.   Now, with probiotics that cause bad gut bacteria to breakdown, we send toxins into the blood;  where the body is recognize and attack these toxins....and in FPIES case, over-react in attack mechanisms.    It has brought on fevers with Little Man in the past as well (with introduction of bifida strain, with reactions to foods).   His experiences are teaching me....

The next day was his IV iron therapy.  By this time, he has decreased his drinking and his fevers persist, he is getting dehydrated.   I am the one to take him to the infusion center for his IV placement and to start the iron.  I hold him while they search for a vein to insert the IV in.  In his arm they go, under his skin, and the vein jumps away/shrinks.  The poke around a little more.   He is screaming and crying, but I notice he is not as strong as he usually is.  This makes me more sad than the pain of the needle he is enduring, he doesn't even have the strength to fight me.   The phlebotomists were very gentle and sweet.  They stopped trying in that arm but wanted to give his other arm a try.  He needs this iron, he is tired and weak, and spiraling.  I know he needs to endure this little bit of pain for a bigger purpose.   I hold him while they try the other arm, and get it in.   So relieved.   IV iron is infused.    We did IV Iron Sucrose for the first time.   IV iron sucrose is the typical administration of IV iron, but sucrose is corn.  Dextrose is also corn but it is broken down an extra step.   Previously we had used IV iron dextran.   IV iron dextran takes 6hrs. to infuse, IV iron sucrose takes 1hr.  IV iron dextran takes so much out of him.    We do not know if the corn product in the IV affects his corn allergy, we do know he needs the iron and that oral iron supplementation was too hard on his intestines, and he was not tolerating it.    We have to do IV.   FPIES is a T-cell mediated response.   T-cells are everywhere in the body, traveling through the lymph system.   So reactions to allergens can happen on the skin, and even in IV.    The risk outweighs the benefit and we switch to IV iron sucrose.

While he had the IV in, we requested he get some fluids to hydrate him.  We have seen in the past that when dehydrated begins to set in, it spirals him quickly.     His dehydration is not from an FPIES reaction, so we remain hopeful we can stay ahead of it at home.  This IV of saline will help.  We hope....

Anemia

Little man has always had low hemoglobin, the first blood work we did (around 6mo.) showed a low hemoglobin and low Vit.D.  It was one of my confirmations of the intestinal inflammation I suspected he had, that matched his ever-growing symptoms.   A change from breast milk to elemental formula where we could be assured he was getting the iron his body needed, but his hemoglobin continued to teeter and his iron stores continued to fall.   Iron is needed for the body to make hemoglobin.  We got him started on some oral iron pills- even compounded to avoid his allergens (corn), initially he seemed to respond to them and we had hopes it would do the job- slowly but safely.   He had a lot of weird symptoms at that time but we attributed to iron upsetting a sensitive stomach and resigned that it would be part of the side affects he would have to deal with....to avoid a blood transfusion.   A few weeks later and he was no longer responding (even reacting to) his iron pills, his iron stores were severely depleted and his hemoglobin dropped severely low.   By the end of October, he was admitted for a blood transfusion....a very scary time for us.  He responded well to the blood transfusion and his hemoglobin raised nicely; however it did little for his iron stores and within a few weeks, he was quickly declining again.   After the soy challenge, it went very low.    That is when IV iron was decided to be the best course for him, along with IV nutrition.    That was almost 4mo.ago.   We have been checking his blood labs frequently, with two checks in a row revealing a wonderful hemoglobin within normal limits.   We last checked March 15.   We had a follow up appointment on April 15 with our GI doctor, it was time to check his labs again....he was chewing on wood, he was fatiguing easily, his appetite was declining, he had had accidental ingestion reactions, he was spiraling....the blood work came back and we were all surprised to find a low hemoglobin once again (8.8)!  Back to IV iron....


Why are his iron stores always so low?   Is it his diet?   From the outside looking in, it would be an easy culprit to blame; but a quick glance at all his lab data and you can see his iron stores progressively declining from 6mo.until he got TPN (IV nutrition with IV iron)- even through getting 5+mo. of elemental formula.  IV iron has been the only thing to bring his levels back to where they should be.   His DRI (daily recommended intakes) for his age is around 7g.- he gets around 15g/day! He is missing vital B vitamins (gets some but not all) so essentially he is a 22mo.old vegetarian. The typical recommendation for a vegetarian is to double up the protein sources to assure adequate iron intakes since non-heme (plant) sources of iron are not absorbed as readily by the body as heme (meat) sources are. So, we're doing that and still he is unable to maintain his iron.


His gut is not absorbing his iron enough- regardless if his diet is complete in it or not.    But why?    

http://www.loveyourbelly.com/resources/gut.html
"people with damaged gut flora often have particular groups of pathogenic bacteria growing in their gut, including iron-loving bacteria (Actinomyces spp., Mycobacterium spp., pathogenic strains of E.Coli, Corynebacterium spp. an...d many others). These bacteria consume whatever iron the the diet provides, leaving that person deficient in iron. Unfortunately, supplementing iron only makes these bacteria grow stronger and does not remedy anaemia. To treat anaemia, the person requires all the nutrients we have mentioned, many of which healthy gut flora supply"  
I found this reference recently, while trying to read more about some information I ran across a few months ago that would explain his anemia more....have found this connection interesting.
I've also since learned that beneficial bacteria actually synthesize/produce B vitamins (which helps the body with iron).  

He has continued blood in his stools, from what we are told is from a fissure (superficial, bright red), his diet is double his iron needs for his age but from plant source, his diet is low in B vitamins, and Vit.C, he has dysbiosis, and I am now really thinking the above reasoning (gut flora) is behind this anemia.    We see in his blood work data from Dr.Jyonouchi that his gut dysbiosis is behind/at the root of his complexity of responses.   

Stool samples are sent, probiotics are on board (trying to find the right "fit"), B vitamins are ordered and will be "trialed".....I continue to fight this fight for him.  But I'm not working fast enough....

Bringing him in last week to get an IV placed for the iron to be administered was rough, emotionally and physically exhausting.    He is so little, and he goes through so much.....I just can't seem to research enough, there are not enough hours in the day to get far enough ahead of his condition to know what next step to take.   Someday, the doctors will know more about FPIES, someday treatment protocols will begin sooner and infants and toddlers do not need to suffer these co-factoring illnesses on top of what FPIES already is.

Hematology follow up

Little man has went through oral iron supplements- responded well too and then did not respond at all, and then actually seemed to have a reaction to (a new formulation Rx), hemoglobin levels dropped to 5 in October- blood transfusion necessary.  Hemoglobin rebounded to 10.5 following blood transfusions, wonderful!  Continued oral iron supplements, and a mere 1mo.later, hemoglobin back down to 6 (following a soy-challenge and discovery of villous atrophy).  Hematology consult, with recommendations for IV iron therapy for 10treatments (2x/week for 5 weeks).  That's a lot of IV sticks, PICC line placed instead and given parental nutrition along with iron therapy via the PICC line for 4 weeks, followed by 1 more week of IV iron.  

The last treatment was one week ago, a lab draw a few days later revealed a hemoglobin of 10.8!  His body responded well to the IV iron therapy and rebuilt his iron stores and red blood cells.   Anemia will always be a component of his diagnosis and he will receive IV iron periodically until we can get him past the curve on his tiny menu to some more iron-rich food sources (ie- MEAT!).   

With the news of the restored hemoglobin levels, we were finally able to remove the PICC.    Little man had the same PICC line for 38days, we kept it clean and intact and NO infections!  Whew! And it is now out - he got a treat last night, and then one just for the heck of it this morning- a full-soak-up-to-his-chest- BATH!  A no-soap bath, but still, playing in water, soaking bath is a treat.   We had given him a few baths over the course of the weeks, but with an arm wrapped in plastic, it was more of a chore than a relaxing activity.   Sponge baths were easier.  

We will do lab checks every 2 weeks for the next few months, as well as IV iron therapy once a month for the next 3 months.  We will not let any slippery slope land us back to a PICC line again.....we hope, and pray.  

Now, onto food trials....soon....