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....

Multivitamin trial....the rest of the story

If you're tuning in to find out how the multivitamin trial is going....it's not.   We left off on Day 3, diaper blow out in the afternoon.  His formula intake was increasing and he was getting fussy but remained optimistic, until the vomiting....

Projectile, forceful, violent until emptied stomach contents...sigh....sigh...sigh.    This reaction reminded us a lot of when he was reacting while breastfeeding (trace proteins in my diet were likely culprits some days) because he was up for drinking his formula (he always was a comfort nurser too) and we feel this really helped him as he seemed to be doing ok.  Of course, he was tired but I wouldn't call it lethargic -- it's always hard to tell at bedtime because of course they want to sleep...it's bedtime and they just emptied the contents of their stomach...I'd be tired too.   But, his breathing and color were ok, and he drank a good amount of formula before going to sleep.  So, we were feeling it was a "minor" reaction (it was after all just trace proteins).   That is until the loose stools/diarrhea started....and they haven't stopped.   He was awakened 3x during the night for explosive diapers, and continued to have them all day Friday, but then they seemed to be starting to thicken up (he was eating really well on Friday).  So, things were looking good- his behavior was good and his color still looked ok. 

Things started to turn around nap time (what nap time?).  He couldn't settle in to sleep and I spent half the afternoon just trying to make him comfortable enough so he could find that rest his body was needing.   Little Man's daddy and I decide, we are done with the vitamin.   This was a "minor" reaction, from TRACE proteins and he is experiencing all of the all-too-familiar-going-on-and-on reaction symptoms.  Friday evening started to bring on concerns as his color started to look off.   We got stool samples to check for infectious sources of his diarrhea and we attempted to get a lab draw.    From previous lab draws around reactions, we have observed that he gets elevated platelets, and often has decreased leukocytes as well.  And then, there is always concern for his hemoglobin and his hydration.   No lab draw, all attempts failed and all we were left with was a very unhappy and tired little boy.   Having difficulty finding a vein, and difficulty drawing from that vein are very typical for Little Man around a reaction, also very typical among other FPIES children (from what other mom's share)....this is one of the reasons why an immediate IV for fluids is advised- not only for hydration but also because of the affects it has on the body only makes it more difficult to find that vein needed to start the IV fluids.   

We have learned another lesson about Little Man and I am prompted to push once again for more detailed needs specific to his condition to be in his chart....we should have gone to the ER with that vomiting.  But it wasn't severe, and he drank right after....but his body needed that IV.  But I have no doubts that doctors would have disagreed- his color was still good, he wasn't lethargic, he wasn't dehydrated looking, and he was drinking....we would have wasted our time trying to convince ER doctors not familiar with our son and his very rare condition, that the IV would help him.     Unfortunately, this is part of the nature of this diagnosis.  The unfamiliarity of it leaves the parents making choices and decisions on their own that would otherwise be better guided by experienced medical staff.   Little man has had more minor reactions than full blown, we are fortunate in that he doesn't always experience full shock- his body has had times of shock symptoms and also acidosis but these are not immediate- only after days of "fighting" and his poor little body can't take anymore, does he start to exhibit these signs.   Would the immediate IV help?  The thought (and experience from other moms) is: yes,it does.  But, again- you can't just show up in an ER and expect doctors to insert an IV on a child that isn't currently in shock, or even to the point of dehydration...yet.    How do we change this for Little Man?  How do we change this for all FPIES children?  

Typical allergies, with IgE mediated immune response, children carry epi-pens so that parents/caregivers are enabled to help their children, while still seeking out medical assistance.   Non-IgE (FPIES) children carry an ER letter that describes an full blown attack with the recommendations for an IV and maybe even steroids-- but so many times the attack stops by the time you get to the ER, or the attack is seemingly minor (although I challenge someone to watch your baby vomit as violently as FPIES kids do and call it minor- we have classified it as minor because we have seen, and heard of, worse).   Vomiting 50x in one hour, and your child's heart stopping- that is worse, that is "full blown"....so my Little Man vomiting 4x in 15minutes until his stomach is empty and dry heaving but then stopping- that is "minor".   But both scenario's need medical assistance, need the IV (and maybe someday there will be even better treatment options to helping stop the reaction) but for now- getting the toxin out of the body is the body's only defense mechanism.   And maybe the IV not only helps with hydration so the body can re-coop better; maybe it helps to "flush" the system.  It would be nice to know if this is something that would help our Little Man.   We will look to try and get his chart updated, once again, to reflect his needs-- should this kind of reaction happen again; and given his history, it will....