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. 

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.   

Transfusion....again

It was last October when Little Man's hemoglobin dropped so severely that he needed a blood transfusion to recover. A quick glance back of that time can be read: here.

Little man had 2 IV iron infusions, but his hemoglobin barely moved and was still very low when we rechecked it.   Iron stores remained low as well.   Why is this happening?  It is becoming more evident that he needs a full anemia work-up (re work-up) but not this week as we were planning on leaving town for a few days.   A discussion with the GI and we know he needs more treatment, he is going to need another transfusion. His iron stores got too low again and his body simply can not make enough hemoglobin or make it fast enough with the stores he has.   We decide it is best for him to get another blood transfusion.  My heart sinks and I melt.  I can't help it, I am crying....I ache for my little man.   He has to endure so much.  Is it something I missed?  Something I did, something I allowed him to have that is making him decline again?   I don't even know and can not think about it.  No time for a full melt down, he needs my strength.   And we need to get to the infusion center so they can begin the preparations for his transfusion....

I pack some bottles and some toys, blanket and off we go.   We get to the Pediatric Infusion Therapy Center (PITC) at the hospital and Little man already is unhappy with where we are going.  This has been too much- needle sticks, lab draws, IV infusions...too many this week already.   They call for the IV team, and lab draw - "difficult stick" she tells the technician on the call.   They arrive and get to work- assessing veins.  Veins that are hiding and mad.  Surprisingly to all, he is not as bruised as one would expect him to be, given his severe anemia (one of anemia tell-tale symptoms is bruising).  The think they have one in his left arm...poke- nope, it jumped.   Get out, try the right arm (little man is getting difficult to hold down), poke- nope, it deflated. The blood is thick and not coming.   They need a lab draw before his transfusion to type and cross his blood, the line is not accessible.   The lab RN is ready to "call it" (sometimes they will call the Peds trauma team to get a difficult stick).  A short discussion on what I would like them to do.   Is going home and pretending all of this isn't really happening an option?   No, no it's not.  I'm holding a tired, anemic, growing little boy who needs adequate hemoglobin to have ample oxygen being supplied to his brain.  "What about his heels?" I ask, cringing at the thought.  "Will you let us try a heel?" the RN asks kindly.   "f you can use a heal for the transfusion, and can get a vein...then yes- please try", as I remove his socks and shoes.   Immediately they found a viable vein.  Poke, bingo.   Now, a new problem is securing a line in a heel of a 2yr.old who wants this stuff "off?!".   We manage to secure it and distract him, and then wait for a few hours while they type and cross and then prepare his blood.  The transfusion takes 3hrs, it's ordered for 2hrs but even the technician that comes to run it acknowledges that might be fast for a little guy with his sensitivities.   We did 4hrs. last fall and he tolerated it well and responded well to it so we decide on 3hrs....it's late in the afternoon already and it's been a long day.   We're tired....and we're leaving the next day for vacation!

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....

My Christmas wish....

We have been in the hospital 2 full weeks now; we will be here for 1 more week (3 weeks total) before we discuss discharge plans and next steps.   Yes, that means we will be here over Christmas.   It doesn't surprise me.  We were on the road, traveling back from PA- having just received his FPIES diagnosis at CHOP on his 1yr. birthday.   We celebrated our 13yr anniversary in the hospital with Little Man after a tapioca reaction, we celebrated my birthday and Halloween with another hospital admission for a blood transfusion.  We avoided a hospital stay for Thanksgiving- in fact, we had a wonderfully quiet and family centered Thanksgiving.   But now, here we are again- facing down another holiday to be celebrated in the hospital.   

We spent the first week adding components to his TPN: dextrose, amino acids, Iron Infusion, then fats and finally vitamins/minerals.   His body showed us weird "off baseline" symptoms at every addition- nothing serious enough for "red flags" so, of course we pressed on....he needs this gut rest with concentrated nutrition.   It is our ultimate hope, pray, wish that this is what he will need to "reset" some of the wrong steps we have taken on this journey....a fresh start for better management of this allergy. 

The second week we spent working him up to 100% of his needs from the TPN.  He has still been able to drink his plain, unflavored, original Hemp milk - as "icing on the cake" and takes in 200-400calories a day, as his "icing".   We have seen good weight gains, but at this point still too early to calculate how much of that is "true" weight gain, or "dry" weight as he is very well hydrated from the TPN solution.   I have good hopes though that some is true weight gain, and that it not only means he is doing some catch up time (from concentrated nutrition bypassing his inflamed gut) but also that his villi have repaired/rebuilt themselves enough that they aren't stealing all the nutrients. 

Little man has received 5 IV Iron infusions, initially his body responded really well to it by bringing up his hemoglobin a whole point (from 6 to 7 now).   His body does seem to over-react to the infusion though, he becomes hyper (crazy hyper) for the infusion day and following day; then he gets a "strung out" look, pallor look to him the day before he is due for the next infusion.   I have yet to figure out if it means anything, or if it is "just" a side effect.   He has 5 treatments to go, so hopefully it isn't something that continues to build.  

His scope is on Thursday and everyone is anxious for that.  Biopsy results won't be analyzed/read until Monday due to the holiday weekend; so we will wait patiently (some more) and begin cycling his TPN so he can be weaned off (and hopefully be home by this time next week!)

My Christmas wish?   Gut healing, no inflammation visual or on biopsy; repaired and restored intestinal villi and true weight gain.  Oh, and a healthier 2011! 

Reset button?

We all, in FPIES world, wish for the reset button.  A "fail" is introduced, sickness prevails, weight loss, oral aversions, reflux pains, eczema flares, etc.   We have been in a vicious cycle with Little Man for many months now.  We find enough pieces to hold up a few sides but then it makes another side fall down.   We found FPIES, we learned how severe and sensitive triggers are, we removed all forms of all of his known triggers and we got him out of daily pain and random vomiting.   Removing daily pain was a BIG step for us, but that meant losing the reliability of an elemental formula, and safe vitamins.  We built him a formula that he could tolerate and gain weight on but he continued to struggle with blood losses and poor absorption of iron on a plant based formula diet, with no Vitamin C. 

Pain and vomiting controlled.  Check.   Adequate calories for growth.  Check.  Introductions (slowly) of a few foods (millet and peaches).  Check.   Blood transfusion to rebuild stores.  Check.   Iron supplement daily. Check.    Soy challenge to begin to add more varied protein sources to his diet for iron.  Check. 

Spiraling begins: Bottom falling out on 4th day of Soy challenge.....villous atrophy and inflammation on scope but happy boy once soy is removed.   Omeprezole is started to help heal inflammation, and help with his empty stomach pain.  Omeprezole brings on it's own set of side effects.  Hemoglobin begins falling again.   We were moving right along....we've hit a vicious cycle that we can't seem to break. 

Hematologist consult yesterday morning.  Long discussions about his need for iron (yes, I know he needs it and we are giving him all the doses his body can tolerate and he doesn't spit out).  He is gaining weight, primarily doing well but his iron is falling again.   It is discussed that this is the villous atrophy and that it is evident it is not healing as fast as we would like it to- to restore the villi to be able to absorb the iron we give him, and supplement him with.   IV iron transfusion therapy is discussed.  He will need 10treatments, 2x/week; starting as soon as possible.  We decide we will start tomorrow.   We are worried about his reaction to it, but it is pointed out..."we have no choices".   Agreed, we are already at the point of TPN discussions; so we are at the "end of the line" for choices/options to get him back on track.   Appointment is set up for IV Iron transfusion therapy for Saturday morning.   We then proceed to the GI doctor's office for a weight check and further discussions on next steps....

IV iron transfusions 2x/week means he will have IV inserted 2x/week for the next month and a half.  GI doctor prefers to have a PICC line placed....if we are going to place a PICC line, then we should also do TPN with that PICC line and see if gut rest with alternative nutrition can get him the "Reset" he needs to get more control of this diagnosis.   Admission for Monday morning is planned for PICC placement and begin TPN.  He will continue to get his IV iron transfusions during this.  We don't know yet how all this will go, or all the details surrounding it.  Honestly, we are still processing it all.   We know he could benefit from the gut rest, and the nutrition.....

One step forward, 3 steps back...

I no sooner finished my post last night and I heard Little Man screaming.   He does often wake around 11pm-12am-ish, but this was earlier and he was not happy.  Most of the time that awakening is due to hunger and he eats and goes back to sleep.   Lately, he's been waking up at around 2am and staying awake for at least an hour and a half before he can settle back into a sleep.  He eats a lot during that time, so hunger again is assumed; or stomach pains (gut inflammation) and he needs to eat to have liquids wash over it before it will "settle" enough for him to go back to a slumber.  

This gut pain also has been happening after nap time.   It's been increasingly occurring over the past 2mo. or so, we think maybe it is from his iron medicine causing an increase in acid and this acid is washing over his inflammation, preventing it from completely healing after reactions.  The GI doctor recommended a trial of omeprezole to help with this - a proton pump inhibitor to take away his stomach acid to avoid having it irritate his intestinal lining. 

Despite having this off and on pains, he has maintained a pretty good baseline for the past month.  But now, we seem to be losing it.  One day will be great, but the next will be bottoming out, followed by a rebounding, and then again a gutter day.   The omeprezole was started last Friday, he had a bottom out day on Saturday but he also drank bathwater on Friday night, so maybe he reacted to that (citric acid in soap = corn), because by Sunday he was great again.   Sunday night, 2nd dose of omeprezole and Monday was an excellent day; so we were hopeful that Saturday's gutter day was indeed from bath soap ingestion.  Then brings on Tuesday and we are in the gutter again.   Lab draw on Tuesday morning doesn't help- this always drains him.  

Lab draw was for a CBC check, how is his hemoglobin/hematocrit holding after the transfusion a month ago?   We did not expect the results we got.   Little man has been doing so well, primarily good moods, even a weight gain and we get the news that his hemoglobin is falling again, down to 8 (normal 10.5-13.5g/dl for his age).  He is on a twice daily dose of iron.  He doesn't seem to be tolerating a second dose if given in the afternoon, so we have to try and get 2 doses in before his naptime.   Unfortunately, we haven't been successful in that daily....and to add to that, he hates it so much- he spits it out if I don't get it back far enough in his throat where he has no choice but to swallow at least part of it.   It's becoming a struggle, and a syringe aversion!  But we know it is essential so we press on.   Missing one dose would have this negative of an effect, than we may need a new plan.  His iron stores have just been too low for too long and his body is not keeping up.  Or he is continuing to malabsorb it since his duodenum is where iron is absorbed and that is where not only his inflammation are but his villous atrophy as well.  I am still trying to process how/why this is happening- how we can't seem to get things on a good track for him.  

Then, last night was day 4 of omeprezole and he was experiencing insomnia....awake, unable to sleep (and WIDE awake for most of the time) from 10:15pm-3:30am!  Thank goodness I wasn't alone, I stayed up with him until 11:30, then woke up little man's daddy....I was so tired and he was no where near going back to sleep!  We went back and forth but Little Man's daddy took the brunt of those shifts as I could hardly even stay awake and Little Man wanted his daddy's cuddles. 

Symptoms of intolerance to this medication are building, and so is my worry about causing him more harm than good.   He needs the help for inflammation healing, the last thing I want is for him to be in unnecessary pain.  But, his labs also revealed neutropenia/leukopenia and tonight he has developed a cough (this happened after the 3rd dose of Prilosec 9mo. ago as well).  He had the insomnia last night, and he has been hyperactive during the day (primarily happy but a tad hyper -esp for him!); his appetite is dropping and he has more constipated stooling.   So far, this symptoms/side effects do not outweigh the potential benefit of intestinal healing.   The most concerning though is that his hemoglobin is dropping.   How do we give him iron supplement with a proton pump inhibitor?  His iron is being absorbed because of the acid his stomach is making to absorb it....until now.   We are once again, trapped in a viscous cycle....

We have a hematology consult tomorrow morning to discuss IV iron therapy; and a weigh-in and check in with the GI doctor.  So, we hope to have some better plans to continue moving forward and break this cycle.  

We gave him half the dose of the omeprezole tonight and I'd better get to bed if tonight will be anything like last night....

Digestion

I am brushing up on my digestion health knowledge, once again.  It is always good to take a re-look at things when you have some new "eyes" to look at things with.   I now see everything with "FPIES eyes".   This illustration is hanging in one of my offices at work, we like it because it is in color, and it shows such a simple- yet informative- illustration of nutrients and the workings of the GI tract (in particular if you have pieces of this missing, or in my son's case- chronically and acutely inflamed.   I was able to find it online, so anyone can take a peek at it too:  Digestion and absorption of nutrients

It was last Dec., after 4mo of trying to figure out on my own what was going on with his little body, trying to control things with a milk protein intolerance consideration (new foods should have worked, as long as we avoided dairy)....but they weren't working.  Soy formula was failing, building up a resistance and causing it's own host of new concerning symptoms.  The biggest thing that I was able to finally connect that his body was showing a sensitivity build up to soy was a croup-y cough.   Others have talked about this similar type of cough with food reactions (often soy is a culprit)- I wonder if it is actually from the reflux?  Could be....warrants further investigation at some point.  But for now, either way- his body was not tolerating the small amounts we were doing.   By mid December, all I could think was- lets just get through the holidays and then I am going to have to bring him in to his pediatrician because I simply can not grasp a handle on this by myself anymore.   I already knew that outside of frank vomiting and bloody stools- little is recognized about delayed food intolerance's in the medical community.  From a dietetics standpoint, we see things differently but we also remain cautious as to not encourage someone to unnecessarily over-restrict the diet....especially the diet of a growing child.  Restricting my son's diet has never been my intention....adding to it has.   But FPIES takes that away, in a cruel way.   Food is not just food anymore.   Allergies take on a whole new meaning. 

Ok, back to December.  Our pediatrician agreed little man was likely building up an intolerance to soy, as many dairy intolerant infants do, and to try him on a 100% no milk,no soy diet (breastfeeding for me and his foods as well), keep a journal, and try Nutramagin, Pregistimal or Alimentum.   I chose Nutramagin.  Only to have him projectile vomit all over our kitchen, multiple times that day.   We even tried it a few more times- just to be sure....each time being more and more obvious and concerning.  Back to the pediatrician and labs were checked for allergies, and gluten sensitivity, CBC, and iron, and 'did I want to check anything else'?  Yes, I'm curious to what his Vit.D levels are.  He was a breastfed baby and research is showing there is higher incidence for some Vit.D deficiency's in breastfed babies, we're getting labs- lets check that too.   No one, not even me anticipated the results we got.    His level was 9ng/ml, with normal being 24-80ng/ml.  Diagnosis: profoundly vitamin D deficient.   We immediately started a supplement to restore these levels.  But my concern remained....how did his levels get so low?  Was my milk this deficient?  I had my levels checked just to be sure I wasn't in trouble too....no, my levels were within normal limits.  But, research has shown that even if mom is not deficient- breastmilk can be (and often is).   But really?  This deficient?  How normal is this?  I already knew by his actions of gas and stomach discomfort that he was having digestion issues, maybe inflammation - my instincts were telling me this....that he had gut inflammation in his small intestine and dysbiosis in his colon.  The gut inflammation was causing a "leaky gut" and causing his body to be sensitive to dietary proteins.   These were my instincts- I had never even heard of FPIES.  Until I printed off an article from EMedicine about Protein Intolerance, there was a brief mention of it there. I highlighted it in my reading, along with milk protein intolerance, multiple protein intolerance, Eosinophiliac disorders, Celiac, protein enteropathy.   My research began with that Protein Intolerance article.  My instincts were confirmed by his labs showing a low iron and low Vit.D, as well as a low IgA (mucosa lining of GI tract).  Now what to do with this information?  What do we do next? 

More Labwork

Little man is heading to the lab again tomorrow. He has 18 little duckies already....he gets a little ducky when he gets his lab drawn, some of these times we have gone without the ducky and some of the times he has been in the hospital for it (no ducky toy there).

So, we're getting our ducky's in a row....he will have his iron and hemoglobin/hematocrit checked again tomorrow. And our pediatrician asked them to add another, more specific monitoring test to the lab work (reticulocyte test?). He seems to be improving daily so we're hoping the numbers match. His daddy and I have talked about slowing down the blood draws too though, as that can't be good for him either (to lose a vial of blood every week!)...I feel as long as he remains asymptomatic - we can let him be the guide. He always has been in the past, when we see a change in his demeanor, doctors order blood tests and then begin to "believe" us that we are already saying he is sick. Dr.P, our Allergist at CHOP doesn't think lab tests are necessarily necessary - "listen to the parents"..."the symptoms tell the story". He has an appt with the GI doctor on Tuesday so we'll discuss that with her then as well.

He has been doing well, feeling better since I added the Hemp protein powder back in to his formula. I was so nervous about the possibility of a build reaction that I had taken it out last Friday, I look back now and think that may have impacted his slide downhill so fast with the reaction. He likes his formula the way it tastes now, it is just shy of 20calories/oz so he still needs to drink 50oz./day (and he does).

He had a tiny slip on Friday/Saturday. He was playing in the playroom and I looked over at him sucking on a wooden play screw from his toolbox set- except it looked like it had something on it. In his other hand was a bottle of sunscreen. Stupid free sunscreen attached to the package of little swimmers we bought earlier this summer- how did that end up in the playroom? How did it not end up in the garbage? I rarely even use sunscreen! Ugh!! I grabbed it from him but not before it was too late- he had already sucked some down. A quick look at the ingredients...of course, soy (tocophyrols) and also mango and coconut extract. Sure enough, within the hour he was itching his mouth and agitated. He had a few rough spots throughout the afternoon of tummy aches and Saturday morning had mucous in his diaper. Ugh- I hope it didn't do too much "damage" and cause him to malabsorb too much. He seems better now today, so hopefully it is already passed.

He is getting 15mg of elemental iron 2times/day for supplemental doses to build back up his iron stores. The pharmacy compounded it for him and we break up a capsule and mix it with water (as little as possible) and give it to him via syringe. It looks, smells and tastes like rust...poor little man. It is giving him stomach aches. Our pediatrician wanted us to build it up to the twice daily so until today he was getting one/day- tonight I gave him the second daily dose for the first time. He threw up. It was not projectile or violent, it didn't even smell. I tried to give it to him on a full stomach- maybe it was too full. I hope that is all it was. He seemed pretty tired after throwing up but it was bedtime. I hope that is all it was (did I say that already?) Yes, I did. When Little man is reacting- small or big, I worry- my anxiety builds. It is a bit of a post-traumatic stress kind of anxiety....most especially when I don't know what it is from, or when/if it is going to stop. With this kind of symptoms- we can only watch and wait and see. See if it builds, see if it happens again or if it was just random, see if he sleeps well tonight.

We just take it day by day. It's all we can do.