"Mommy, I need you"

Little man started this about 1-2hrs. before the vomit the other night.  It is new.  Holding out his arms, he stood by me and said “mommy, need you”.   

From there, the symptoms continued to build, whiny and clingy and then throwing things and crying, and then the vomit.   Potato now goes on the shelf. 

As I try to decipher through his reactions and symptoms (symptoms we may have missed before getting to vomit).   My thoughts also go back to when Little man had the sepsis in his PICC line- how the symptoms came on suddenly, the chills/fever/rapid breathing; followed by vomiting….for little man, this happened twice, and then shocky symptoms appeared, after the third time came the full shock reaction.  The body could not expel the toxin because it was in his blood.   How similar is this to FPIES reactions?   The toxin is the food, that is in the GI tract (and “leaks” into the blood) and the body works to expel it (the vomit/diarrhea).   But what happens if the body doesn’t expel it?  Little man doesn’t get immediate to shock symptoms (acute FPIES) from foods; my theory is that they are septic in his body before/instead of that.  The reaction from the food-perceived-toxin is a sepsis like reaction; labs done during this time show that his body is struggling with what looks like an infection.  Continued ingestion of the trigger food “builds” this toxin in the body, thus further weakening the body under this sepsis.  The first time the body succeeds and expels the food, it is a sepsis response; continue this and the body becomes more efficient at expelling the toxin and the sepsis quickly becomes shocky symptoms.  Each food can be different set/order of symptoms to this reaction, as the body struggles to either accept it or reject it.   The mechanisms and reasons to why his body accepts some foods as safe and perceives others as toxins remains a complete mystery.

Fluids help the body cope with a sepsis reaction, they are part of the treatment for it- the hydration helps keep the body out of shock as the sepsis affects every organ. Little man is on IV fluids every night with his TPN, I really have seen how this has helped his body cope through these reactions the past few weeks. And I am grateful. 

And where does the pain come from?  What kind of pain is it?  Recently, I had a touch of the flu- my body was fighting a toxin and it ached all over.  I didn’t have a fever, I just ached everywhere.  I wonder if this is similar to what it feels like for him.   His body is attacking a perceived toxin, so is this how he feels every time?  When he was under a year, I used to give him some motrin to help with the pain- between the teething and the chronic FPIES symptoms, he lived in chronic pain, so when there was a spike in this pain- I would treat it with some motrin.  Unfortunately the motrin only helped some- he would get pain relief for ~2hrs., and then he would be in worse pain than before.  I thought that was odd since ibuprofen was supposed to last ~6hrs!  Once we got him compounded ibuprofen, it made a world of difference!  Pain relief that lasted 6hrs.+ and didn’t cause more pain!    I also remember thinking (and saying) that it seemed to me to be pretty significant pain, that if an adult was experiencing it- we would surely ask for a morphine drip! And yet, my son’s only comfort is occasional ibuprofen.  Well, ibuprofen and daddy or me; and so he says, "Mommy, need you".  

Driven

Ok, some who know me well enough would better describe it as obsessed. But I chose to describe it as driven. An obsession would bring me pleasure, and obsession I couldn't stop. Navigating through FPIES does not bring me pleasure and I could stop at any time that my child could eat "normally".

I am driven because of my son's needs. I am his mommy. This is my job. My other job? I am a Registered Dietetic Technician. My life is all about food and nutrition. I now hate food. Ironic situation I am in.

My perspective from a DTR has made this both easier and more difficult.

It makes it difficult because I have seen things from the clinical perspective. I have seen kids much more sick than my little man. This is why it took me so long to ask for help. But I have a sick child too and he deserves every chance at health that any other child does. It is also more difficult because I don't always hear just what the doctors saying to a mom, I also "hear" what they are thinking as clinicians. Right now, I know they are thinking I am being reckless with my baby boy's health and that maybe I'm even a little bit crazy at the expense of keeping him pain free. And that by building him a formula, I am depriving him of nutrients yet to be identified. Little man has a clinical diagnosis- based on symptoms. The labs and tests that guage his illness are in the symptoms that the parents tell. This makes it difficult because the medical community is taught- is centered and anchored on the concretes. No one can just "take my word" and they can't "measure or biopsy pain", or measure "inflammation from pain".

Having a clinical nutrition background has also made it easier. The world of allergies is not foreign to me. The world of nutrition is my "second language". My interest, and the reason for getting into dietetics, has always been the GI and digestion component. My two worlds collide with this little known diagnosis of FPIES. I have a deep rooted faith and I know God has given this little child to me for a reason. It is because I am driven for his care that I have come this far in helping him. I am driven as a mom to help my son, I am driven as a dietetic technician to help as many other FPIES kids as I can. It's what I do, it's who I am. I am driven.

Progress

Sorry for the multiple posts today but have a lot on my mind lately and realized I forgot to share our small victories....

We are making progress, even though we will continue to strive for more - we are happy to celebrate the little steps.

Little man has struggled with his weight since he was 6mo. old (and before), he has many periods of no weight gain (after reactions, the body doesn't absorb nutrients as efficiently thought to be because of the inflammation). We monitor his weights for when he starts to gain again, gives us indications his inflammation is decreasing enough for him to absorb the calories he takes in.

Little man lost weight right before being admitted to the hospital, one month ago. He has re-gained that lost weight and more! Since the admission to the hospital, he has put on 1#11oz.!! He went from 19#8oz to 21#3oz. (at this weeks weight check)!

He is FINALLY gaining weight- in good strides! He is also NOT IN PAIN!!! His bloody stools do continue, we are not sure when that will stop but these other signs are good indicators that we are moving in the right direction.

These indicators will also be the criteria for measuring how he is doing on the Neocate Advance (from the UK).

Keep up the prayers! We're doing something right- he is a happy boy! And for now, I can't ask for anything more.

Little Man's daddy has been building him and mudpies a swing set/fort this week. We celebrated small victories with buying a slide for it.

Screams in the night....

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

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

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

More sliding...

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

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

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

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

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