Bottle please, mommy

He ASKED for a bottle! Actually 3 times yesterday!  What music to my ears!  He asked for a bottle! (this is normal for him except in the last few weeks).   So, maybe we are turning a corner and he is healing or whatever it was that was the catalyst for this recent spiral is moving out of the picture?...

The other thing I changed was that I increased the hemp in his formula "recipe"- taking the recipe from the 18cal/oz to 21cal/oz (at least) - and he is feeling SO much better!  I did have to change the amount of ProViMin that goes in to the recipe (and haven't calculated out that yet), but this seems to be the break he needed in this spiral....he needs the calories more than the nutrients (so his body tells us) - and I had it the other way around.   The 'recipe" is too thick with either too much hemp or too much ProViMin (powder).   I will have to do some calculations over the next few days to see where he is now at with nutrients but I am just so relieved he is coming out of this "funk".   He has a few spots in the day where he is edgy but nothing compared to how he has been over the past 2-3 weeks.  Another situation where you kid yourself on how bad it is, just finding ways to get through it, until you're over the hump and looking back realize how hard it was - which means how "off" he was.   

I still am unsure what the catalyst was- whether it was the heat and then not getting enough to eat or if it was the work in the basement (mud and taping,etc) and the subsequent corn exposure it gave him.   His allergy is a gut allergy and we avoid corn ingestion like the plague.  In fact, he hasn't had a corn ingestion reaction (full vomit) since a multivitamin in Jan. 2011.  However, he's had corn contamination symptoms, and he's had an inhaled corn reaction (vomit).  This concerns me that his corn allergy is worsening, or that he has more than FPIES going on (which we have suspected all along anyway) - not that other kids don't experience inhalant FPIES symptoms as well but it is more commonly heard of with EGID (eosinophlic gastrointestinal disorders) - which are very close in nature to FPIES.  In fact, I've often wondered if he doesn't have some form of an EGID that has gone undetected because of how difficult/specific it can be to diagnosis - especially when we keep his diet so tightly controlled.  I don't know but inhalant allergy symptoms sure do bring things to another level.  And I've been noticing a pattern of this in the past - days when hubby mows the lawn and little man wants to ride on the tractor- he inhales all those fumes (yep, ethanol = corn), times when I've used a different laundry detergent and it has a perfume smell, he gets very pale/sheet white on these days...the smell alone - with all the corn, is making him sick.   

I asked this on one of the corn free forum's I follow and was actually a little surprised by the answer- how many people had actual experiences with house remodeling....and ER visits because of how severe it set off their corn allergy (people on these forums have varied degrees and forms of corn allergy from your typical allergy of hives/wheezing/etc to GI distress to neurological, emotional/mental effects,etc).  I follow these groups because it is at least a starting point to helping me learn and keeping our son safer.  And I am so very grateful for them. 

The dietitian let me know today that she was low on her numbers for his calories/ounce in his formula recipe- wow, that is a relief!!  Although it is still only 20cal/oz, it is better than the 18 she had mistakenly calculated it at.  She thought something must have been off so she went back and recalculated it.   She has a program for calculating it but the Hemp seeds aren't in that program- so she has to add those in by hand - and she was doing a full analysis of EVERY.SINGLE.NUTRIENT.   I'm glad she double checked, it makes me feel a little less sad about how low he went for those days - either because of the heat or because he was feeling poorly from the potential corn-y exposures....or (and likely) a combination of both.   

Whatever it was, we seem to be over the hump - and I know the prayers that went up were pivotal with this.  God has been trying to teach me this....that the answers to my prayers don't always come from my whisper to His ear but instead from my whisper to the hands (and knees) of family and friends....showing us that we are never alone....no matter how isolated we feel when no one knows how to help when he is sick.  

We are blessed. 

That Mommy Instinct once again...

Before little man started going downhill again, my mind was going towards next steps.  I still wasn't feeling quite like ProViMin was a sure bet just yet- until we saw some follow up labs and weight checks,etc. but did want to start preparing for some food trials- to build his diet, using the tube if possible -- for the trials and to get re-acclimated to the tube to utilize it to get his caloric needs in without obsessing about every ounce of formula and having to choose eating over daily activities.  

We couldn't stay with our heads in the sand for forever, it was time to move forward.   So, I had made phone calls to get a follow up with the dietitian, and a follow up with the GI.  I also called home health to get them on the radar that we would want some assistance with getting Sam used to his tube again.  A week went by and no one called us back (no one from the GI office).  Hubby made the follow up phone call- to see if we could get some attention.  By now, things were starting to fall and the trials were getting further from my mind....

We finally got the follow up appointments scheduled.  But now, we have new things to discuss with everyone because I'm noticing he is not picking up on his eating- even though the heat has broke.  I did a 3day "snapshot" check of how many ounces he was taking and it was around 28-32....I wasn't positive how many calories/oz his formula was (with ProViMin mixed into hemp milk) and was thinking it was around 20cal/oz....this is not enough calories.   Maybe this is why he is so tired?  But then, why doesn't he eat (drink) more?  I am offering a bottle every time I turn around it seems- and realistically, it's every 1.5-2hrs, and he accepting them every 2-3hrs. Something just is not right.   It appears (from his symptoms) that his anemia is coming back (low appetite, low energy, and disturbed sleep), but why? 

We went to the Dietitian appointment this week, and learned his formula is more like 18cal/oz.  I almost cried.  He is hungry, starving himself...but why?  Why is he starving himself?? The other time he self limited was when the food hurt him.  More specifically, the formula.  He did it with Elecare- starved himself into a hospital admission when he was 7mo.old; he did it with Neocate before we switched to Hemp milk, he was doing it with Alimentum and now again....is it the ProViMin or?? Either his appetite is really off because something is "disconnected" (his anemia or his carnitine or maybe even his thyroid?) or he is reacting to the ProViMin so he is self limiting- taking only when he is so hungry he can't not take it.   When you need ~1500 calories/day and instead you barely eat half that- what would cause that???  

He has a lab re-check in a week and a half but we decide we need to request to move it up, he is symptomatic and another week and a half he may need to be admitted to the hospital if we don't figure out how to help him.  

The lab draw was yesterday.....and it is concerning.   His anemia is back (why??), his protein stores are low (why??) and his Vit.D levels are low.  Well, an easy answer would be that he isn't getting enough but with the ProViMin being a powder - even though he's only taking in 30oz/day- he still gets the better portion of his nutrients from the ProViMin....certainly enough not to cause this.  Our Dietitian recommended we check a few other nutritional labs as well and they are within normal ranges so why would some be low and some be fine if he wasn't getting enough nutrition?  The answer seems to be that he isn't absorbing the nutrients, the iron is the same nutrient he malabsorbs when he has inflammation;  that the inflammation is in that place in his small intestine. And with protein stores being low, despite getting adequate protein intakes....he is malabosorbing.  But, why?  What is causing it?  Is it the accidental corn exposures?  Is it the inflammation from Alimentum not healing?  Is it from the ProViMin?  We don't know....we are hoping the GI will have some idea's but worried she may not.  

The pediatrician's recommendation is that he is clearly not getting enough nutrition on his current plan, and that he needs to be back on the Alimentum since that provided the nutrition he needs.   Quite frankly, this was poor advice.  For one, the ProViMin does meet all his needs.   The Dietitian has charted this, that he needs about a cup of ProViMin/day to meet 100% of every nutrient.   He is only getting 1/2cup right now (at best) but still getting a good amount of most of his nutrients.  The numbers don't add up....he should read the Dietitian's note so that he can give informed recommendations, to help us make informed and the best-interest-for-our son decisions.  The Alimentum took over 50oz/day to meet his nutrient requirements-- and he wasn't drinking that much...and yet he was malabsorbing even more.  He was not tolerating the Alimentum, and his body was rejecting it as quickly as it was taking it in....causing more damage to his stores than if he wasn't taking it at all!   How do we know this?  His behavior, his mood, his appetite, his sleep, his crying, his pale skin, his blue around his lips, his labs, his dramatic decline in iron stores and hemoglobin, his terrible-terrible looking and painful, leaking tube, his no weight gain, his volume-ness stools, and the last telling sign was the analysis of those stools, which revealed a high alpha1 antitripsin level and a high calprotection - indicating malabsorption of proteins and significant inflammation and enteropathy.   

His color improved on the ProViMin, his mood, his behavior.  His diapers have not.  My suspicion is that the Alimentum caused significant villi damage and that the ProViMin was working- when I was able to get enough in him, but with the heat and his decline in intakes, he started falling behind....and now we're seeing the (quick) effects of that.  

Either that, or he's reacting to the ProViMin- something subtle...  

So, the plan?  We need to push the ProViMin and see if things get worse or better.   He won't drink more so we will need to use the tube- it's make it or break it time with this tube.  We had our home health nurse come by on Thursday to see if he would allow her to check on his tube and even use it - and he did!!  It took a bit of coaxing but it ultimately went smoother than any of us anticipated!  We are encouraged that since he now doesn't have constant pain with it, that he can start using it again.   We will plan to give him whatever feeds he needs above his formula intakes, we hope to be able to do this at home but worry that the GI will want him admitted.   When he first came home from the hospital after having his Gtube surgery, he had the extension hooked up 24/7- there is a "button" in his stomach wall, that gets opened and an extension- the tube- hooked up to it for 'feeds'.   We took that extension off because it was pulling (and possibly preventing healing) and the tape was causing a reaction to his skin (painful).  Getting him hooked up for feeds since has been a challenge.  So, we may try this method again for a few days/week to see if we can get him back on track....or it will make it clear that ProViMin is a problem. 

Is it just the heat?

Little Man had been doing well, then the last week of June brought really, really hot days....and we tried to stay cool; but it wasn't enough.  His appetite tanked, and it became my full time job (not that it isn't already) to push more and more with the bottles.  I was worried that he wasn't even taking enough to stay hydrated, much less for his nutritional needs.   And I prayed for a break in the heat and we kept the air on and kept him inside and tried to keep our activities low key.   And I wondered why he was responding so negatively to the heat? He would sweat within 2 minutes of being outside, and 15minutes would have him drenched in sweat!?! 

We enjoyed his brothers 5th birthday party- a backyard BBQ- and he was doing primarily well that day....it was the days that followed that he started to decline.    Was it the heat?  Was it being too busy all week preparing for the party and having church school and going, going?  Or, did he get a corn exposure?   

Something isn't right because he clearly started going downhill that week....maybe he didn't recover from the IV iron (the dextran that is corn), maybe his body isn't recovering from the Alimentum inflammation?, maybe it's something else in his diet, maybe it is the ProViMin,...

I'm getting worried....one of the last times we spoke to our GI she relayed that she was "getting frustrated" that we don't understand why his gut doesn't function properly; and that she wanted to have him admitted (somewhere, not necessarily here) that scares me.   It scares me to have him admitted here because they always set him back, it seems no one even tries to understand his FPIES and the mechanisms that happen in his body. And getting admitted someplace else?   Where?  Where could we travel, be away from the boys, spend time away from my family, and work, and put him through more and more tests and get actual real help and answers?   Where??  Where would we go that we don't get the overwhelmed door shut in our face, travel how far to say there is nothing else to do, nothing else to help him....

So, with all of this weighing heavily on my mind, and little man clearly not getting better- even with the break in the heat, his appetite was not picking back up and his energy was really low.  His sleep was getting more out of whack- not waking in his sleep in pain, but unable to fall asleep or sleep very long. Something is off, what is it?   

Disaccharidase Deficiency

‎"The intestinal biopsy from this patient had a generalized disaccharide deficiency"...so reads Little Man's lab results from the biopsy test. I had them mail me his latest labs (pre hospital and during hospital) as I keep a medical file on him at home and like to have copies of things like that. His levels are on the low end of abnormal....they are all about half of what they should be.

This is how his lab results read:

Lactase 12.2 with normal range being 24.5 +/- 8 and abnormal being anything below 15.0

Sucrase 12.2 with normal range being 54.4 +/-25.4 and abnormal being anything below 25

Maltase 50.8 with normal range being 160.8 +/-62.8 and abnormal being anything below 100.

Palatinase 2.0 with normal range being 11.1 +/- 6.5 and abnormal being anything below 5


Well, I'm sure they were waiting for his appt with the GI on the 23rd to discuss these results but here they were on the lab report...and I don't need a GI doctor to tell me what this means.

I KNEW there was an issue with sugars! I had to talk them into doing this test (the GI didn't have to much experience with doing it). It was sent to NY, so we didn't have the result right away.

I am not sure yet if this is something he will have life long, or if it is as I've learned about - a secondary deficiency because of the inflammation.

SO, this would be why he did so poorly on tapioca starch, and all fruits and everything with sugar basically....I have more research to do on it and I hope his GI will have more to add but it was a bitter sweet finding. I knew it.....but I was hoping I was wrong - you know?

Will the mom with more knowledge/awareness on FPIES and her son please stand? Oh, wait- please sit down....she's tired! It's been a long week (ok, it's been a long year). As we learn more about test results and process through more from the hospital stay....I am starting to feel the (long overdue really) impatience with the medical system here. I know his "team" cares very much -- maybe even too much. But, I just wish they could help more....maybe they just think I can handle it (because I am)? I need to find a way to get them on the same page- so this doesn't continue to be so exhausting and so I don't have to constantly think about how I am going to next update everyone...and get them to hear me so they can help me help my little man.

I struggle asking for help. Little Man's daddy and I are not accustomed to asking for help- we are used to doing it on our own. I am not sure if this is just how we were both raised, or because of him being in the military and not having family around, or pride or maybe just plain stupidity but we feel our children are OUR children- and therefore OUR responsibility. God is entrusting them to us. We "dealt" with Little man's "issues" (as we used to call them) for many months on our own- he was sensitive to foods in my breastmilk and this caused a lot of weird symptoms for him. He got more and more sensitive as we introduced formula's and foods and we tried to figure things out. I finally asked for help- not first from his pediatrician but from my colleagues- Dietitian's; shortly after I brought his pediatrician up to speed. I now regret not bringing her in the loop sooner but I was just trying to figure it out on my own (again, my kids = my responsibility) and at this time there was throwing up but nothing severe or violent. When I finally did bring it to the pediatrician, it didn't take many visits for her to realize that something was not right with Little Man. She was worried about eosinophilic esophagitis (which we have since learned the two can look a lot alike in the early months). She knew enough to know something wasn't right, but not enough to know what to do to help. But she continued to try. In and out of specialists we went, doctors in the hospital, an endoscopy with biopsy's, lab tests, and of course many sleepless nights- trapped in a glass box that was suffocating me. That feeling of hopelessness....when your baby is in pain and you just know something is so wrong and you keep reaching out for help, putting yourself out there- vulnerable...having people say you are just too anxious and that is why he is so sick or that you're not coping (how does one cope when you have a sick child and no one knows how to help and you keep getting shut doors?). My walls are still up...and Little man's daddy has a fortress built up....a man's responsibility is to protect.

We were building up a team of doctors that we can trust and rebuilding my ability to ask for help...until, this last hospital stay brought too much of that back and now I am feeling a distrust again. If I ask for more help with managing his care, will I be told I am not coping again? Isn't asking for help part of coping? Isn't building up support systems coping? Blogging is coping for me- it is therapeutic to journal our journey and "get it out", reading others blogs is also therapeutic. Finding "normal" in our lives again is coping. I always accept any suggestions for ways to help cope better. I know that is what is best for my boys. A happy (ie non-stressed) mommy = happy family.

Ok, this post went down a curvy path. But these continued lab results and findings only are bringing more and more of this to surface. I have been saying all of these things about Little Man for months...but I'm not being heard. Will they hear me now?