No Banana

Banana has not made the expanding menu cut.   Little man has had banana in the past, the symptoms have not been clear enough to continue or cut it, but last summer after 3 days, he had bright red flecks in his diapers so we didn't continue.    

A day a week or so back, we were at the Good Food store picking up some more maple syrup and peaches and his brother wanted banana's, he got little man excited about having banana's so I agreed to buy the banana's.   He couldn't wait to get home to eat a banana!  He was so excited, he ate most of a half of one!! Gobbled it down!  All was well and good until 4hrs later he had made a "stinky" diaper, and changing it revealed what looked like raw meat- blood mixed in, and a lot of it.   Sigh, same reaction as last summer only much quicker.  Yep, banana needs to be shelved.   Ten minutes later, another very large diaper with even more blood.  Shoot! And not even ten minutes later, another one!  Crap!! Is this going to get worse?  Are we going to see vomit?   Thankfully no, we did not but loose stools after eating banana is not ok and blood is most certainly not a good sign.   

This was actually right before the GI appointment a few weeks back and when we decided to add back in some of the Alimentum- because with the blood in his stool, he was going downhill fast again.  He had such adverse responses to the Alimentum- again making me think more of it being tied to his dissacharide (carbohydrate intolerance) deficiency because it is worse with a "flare".   After seeing the GI and getting the go ahead to stop the Alimentum, we did for a few days only to have him sink down again- low energy, pale color, disturbed sleep - not reflux but the same type when his iron is low, where he can't get to sleep or is awake in the middle of the night, insomnia).  We were planning on leaving for a long weekend (Memorial Day) and we don't want to be admitted to the hospital before that so we weigh the risks vs. benefits and decided to give him a few days of a few ounces of Alimentum again.  Back and forth and round and round and we still get the same symptoms- paleness, blue around his lips, then behavior issues, large volume stools, then disturbed sleep.  We just don't know what to make of it....clearly something isn't right... We hope he can make it through the weekend, through the travel.  We take along the Alimentum just in case....  

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....

My Journals...

In the beginning, I started keeping a journal of foods eaten (including mine when I was nursing) and symptoms noticed, I even had a "pain scale" on some of my first journals as we were often trying to convince doctors that yes, our little man was in a great deal of pain and that no, it wasn't "normal", or part of his temperment....also because he seemed to have a level of low pain 24/7, it helped to see what times of day/hours from ingestion of something that that escalated.  

Journals have been incredibly helpful.   I started in March of 2010 and continue every single day since- even when he was in the hospital.   It becomes tedious work because I was transferring sloppy, crazy, quickly written information to legible printed information in a table format in a word program.   The work is tedious but it also very reflective- which is incredibly helpful for seeing larger patterns to things, allowing me to note something one day without worrying about it until the picture is filled in- because of his many delayed reactions. 

Now,  my journals consist of 2 parts.  One template that I print blank, hand write in and file after I summerize the information by the day.  It is the daily summerization that I still put into a table in a word document, and the reflection is still helping. 

For a few examples of my jouranls, take a peek in my File Cabinet.

Today, I logged a few days worth (almost 2 weeks!)- I don't usually get so behind but with the start of summer and a new schedule in our household...well, you know the drill. Anyway....I realize I wrote down on the 2nd day of Elk that he had a bloody diaper with streaks of mucus. I noted it, I may have thought it was left over from blueberries, I may have been waiting to see if it would happen again (as I noted the next day that the diaper was free of visible blood or mucus).   I've been trying to analyze the symptoms following Elk to decide if it is something we should keep trying to find ways to feed to him. With these logs, and the reflection I am given on those days and since then, I realize he is just not ready....banana= blood in diaper, blueberry = blood in diaper, Elk  = blood in diaper.  I feel his body is just not quite ready for this diet yet....that he still has stages of healing that do not include this kind of trial right now.  So what now? 

Now, we turn back to his "safe" diet- his formula.  I am continuing to work through the recipe in that- tiny, tiny changes- increasing the protein powder, increasing the fat, changing the arrowroot starch amounts, getting the most of the probiotic I put in it (and get cultured formula!).  And, look once again, into how to fill in his nutrients without foods.   A B Vitamin Complex I had purchased a few weeks back is standing out in the cupboard.  I had put it aside to do the Elk trial instead.   The last vitamin trial we did did not go very well, so we have been leary of doing vitamins when we would rather do food.   But if food is too difficult on his system still, if his gut isn't ready, if we need to keep working through probiotics having their effects on his gut, we need to keep exploring how to fill in these essential nutrients.

With the addition of B vitamins, his formula will be much closer to complete.   We still need some micronutrients like copper and magnense.   We are working on finding non corn fed chickens for EGGS that would fill in those final micronutrients.   With these nutrients being provided, the gut flora will not have to synthesize so much of them...and maybe that is our piece to the next step- to re-assign the gut flora to it's job of keeping the gut healthy and keeping the "bad" gut bugs at bay, instead of working overtime in so many area's to keep his other systems growing and thriving.   We have already witnessed many positive changes from the addition of probiotics to assisting the gut flora in his health.  

We will continue B Vitamin trial, which is looking well 3 days in, and then we will continue strengthening his probiotic dosage and building his gut flora, restoring his "leaky" gut.   And then we will look to introduce foods that will support all of this building and growth.    Oh, and in between there- we will enjoy our Little Man, and enjoy summer with our boys!

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.

Many faces of Little Man

The many faces of Little Man....having more good days than bad lately. He learned how to High Five this week- he even says it!! He loves to make all sorts of animal sounds. Loves to play peek-a-boo and clap his hands. He gives the best hugs and kisses. He is such a loveable little guy!

Despite having blood in his diaper yesterday he had a good day, he has not had any today but has had very loose stools all day...and he clearly isn't feeling good and now the detective game begins again....what is causing all this? The Neocate? The new changes with formula? A viral illness?

I called our Allergist right away this morning, he confirmed my thought process that the trace proteins in the Neocate are continuing to assualt his intestines and now has moved to causing colitis. He urged that we stop Neocate immediatly. We notified our Dietitian of our new curve ball and she worked all afternoon on finalizing his specific new formula- Hemp base, carbohydrate sources, complete amino acid source, vitamins and minerals and a little extra fats....my kitchen looks more like a science lab! But I am SOO excited at the possibility of continuing to see his true personality shine ALL day instead of just a few hours here and there, or not at all because it is buried underneath all the pain. Today has not gone as well for him, I suppose he just feels lousy (Allergist said he might -- encouraged me to give him lots of pedialyte today...well, unfortunatly Pedialyte is all corn derived as well). He seems to be running a low grade fever this afternoon, so trying to keep an eye on that. He just couldn't settle down for a nap although clearly tired. I gave him some of his compounded ibuprofen and that helped A LOT -- which is great but also confirms to me that he is in pain. The ibuprofen wore off before it was time to give him more, I tried everything and he was not happy - so finally gave him more ibuprofen and he finally gave in to sleep.

I do not like not knowing what is wrong, or worse- how to stop it or help him....it simply breaks my heart. Hopefully he will get good rest tonight and feel better in the morning.

Tapioca

The next step in building a formula for our little man is adding a carbohydrate source. We will then get a good amino acid protein profile added and FINALLY move away from Neocate and it's trace corn proteins.

Those trace proteins may be causing a new problem, for the first time tonight- his diaper had blood in it. :( Many experience blood in stools with allergic reactions, we saw it at 8weeks with our oldest son when he was reacting to milk proteins. It is called allergic colitis, it isn't necessarily a component of FPIES but many kids have it also. We have not, until now.

Tonight, I'm stumped- why now? Where is it coming from and should we be worried? How worried should we be? Little man has hyperplasia in his colon and the GI that performed his scope said it is common to see mucous and blood from the sloughing off of this from food intolerances. We felt lucky that despite seeing this in his gut, little man had not experienced the colitis.

And today was going well-- we are making little man a formula he can thrive on!!! We have an awesome dietitian who will help assure that he gets all his micro and macro nutrients, calories, protein, fats, carbohydrates. I spoke with our allergist's RN today and got good compliments on how we are handling things and moving forward.

Thankfully little man isn't having any GI distress -- so I am not inclined to think this is leading to an FPIES trigger reaction but I'm certainly not encouraged by this new appearance in his evening diaper change.

We press on....more on the FPIES rollar coaster ride!