GI Appointment

I don't even know what step to take next....We pray that we recognize the answers to our prayers on the next directions he needs for healing....

I had called earlier in the week to get a follow up appointment with the GI because of his Gtube.  The previous week, the surgeon's NP had said that their recommendation would be to put him under sedation to do a tube study.  A conversation with this NP on that Monday morning and she now felt he should have an endoscopy because it wasn't just the continuous granulation tissue that was concerning them, it was the continuous brown drainage that should not still be there with a tube that has had all these weeks to heal.   This tube is causing him daily pain and suffering and we can't decipher which symptoms are FPIES/adverse reactions to foods or tube pain and we're not even able to USE it so we agree- further evaluation needs to happen.  

By the end of that week, we not only need to talk to the GI about a tube evaluation but we need to talk about a new plan with the Alimentum and food trials...

We discuss about how he has been doing and how his Gtube is and where we are at and going.    She is sure he needs reflux medications; remindinh her there are none that he can tolerate.   She doesn't know how to treat him if she doesn't treat his apparent reflux/ulcer, attributing everything (including this tantrum) to the ulcer.  I don't mean to disagree with her but he has days where these tantrums are not anywhere near a part of the day, he has nights where he sleeps through the night, he has days where his tube doesn't ooze and isn't inflamed.  I just am not sure he has ulcer damage but agree that I would love to try and treat it- if it can be done safely.   We decide on sodium bicarbonate, in pharmacy dosing and strength, to at least neutralize the stomach acid for awhile.  She feels that the Gtube is causing the stomach to produce extra acid as this can be a normal response to a Gtube (the body naturally responds to the foreign object), she feels that the drainage from the tube (the brown gunk) is stomach acid....although does note that it is interesting/surprising that it is not breaking down his skin around the Gtube.   My suspicion is because it is stomach acid but it is not acidic. 

We discuss the Alimentum more and she hears our concerns over his tolerance of it, or our difficulty in finding or maintaining a tolerance of it and at first suggests we stay under 8oz of it per day and then later changes her mind and agrees we stop it altogether, in preparation to trial a new formula- one called ProViMin   So, the plan is to stop the Alimentum and start the Sodium bicarbonate as soon as we get the Rx for it (regular old baking soda is too hard to "dose").  

The Spiral

The lubricant kept Sam "off" for a full 10days, and wasn't until day 14 that we started to see his color come back again- otherwise he is a pale and pasty that has us worried.  I was so relieved when it did come back.   

In the meantime, his tolerance for the Alimentum dropped significantly.  I have never been able to really tell how he is doing on it- knowing that something isn't quite right but how off is it and how bad is it? is the question.  No vomit or diarrhea means no acute FPIES reaction but poor color, circulation (blue around his lips and eyes a lot and mottling on his skin), poor appetite (he doesn't ask for food when he has the Ali and no, it's not the calories because he takes in more calories when off it), increasingly poor sleep and mood/behavior and decreased play.  Any little wind blown in the wrong direction will set him off and he loses the ability to control his tantrums.  I know, you're thinking- what 2yr.old can control their tantrums but there is a huge difference between a "normal" 2yr.old tantrum and these possessed irrational tantrums he goes through. He has 3 stages of tantrums- 1). normal 2yr.old, 2). unreasonable and intense and 3). irrational, unrecognizable, possessed.   When he escalates to #3- we know we must stop and assess the situation because they really are not his true nature but feel it is his way of telling us he hurts.  We were getting more and more #3 tantrums with continued Alimentum.   Exhausted one day last week and busy running errands- I did not add the Alimentum to his afternoon bottles and what was becoming a typical evening meltdown fest, was much-much less and easier to control.   I really started to wonder what the Alimentum could be doing to his system?    And, even bigger question- why?   What from? What was causing this? Dissacharide deficiency (carbohydrate intolerance) or FPIES or something else?   Whatever the answer, his quality of life and ours was increasingly declining.   The stress it has on all of the family members to tip-toe around a 2yr.old's insane screaming tantrums is beyond any words I can describe here (especially since I'm still a bit sleep deprived from it all).  

So, that was Tuesday and then Wednesday we skipped Alimentum altogether and he was an angel.  So, so, so nice to see him just PLAY and BE TWO and ENJOY his brothers and his toys, and books, and to SLEEP for a normal nap and wake only 1-2times/night instead of oh-so-many-more-times.  Clearly, clearly, something is NOT right- but if it is the sugar, can we find a dose that works for him?   If it is the sugar, maybe it is worse after a reaction when he gut is inflammed so we just need to cut back after a reaction and then slowly build him back up again?   But wait, after a reaction is exactly why he needs this formula so badly to begin with.  And if he's on it at other times, he doesn't want to eat food - so then we can't trial actual FOOD....ok, if he was 6-9mo., maybe this would work better because of the nutrients it provides him- we could ride the line a bit longer but he's not 9mo., he's almost 3, he needs FOOD, and we've been riding this line for 3 mo. now and it is quickly reminiscent of his Neocate days (except on Neocate, he vomited and was much more miserable but are we simply building to that?).   What can we do?  What should we do?  

By the end of that week, he seemed to be fully over the lubricant inflammation and he seemed to be so much better with the removal of the Alimentum but we aren't ready to just throw it out yet, maybe we can find a threshold (if it is just the sugars)?  So, Thursday we gave him more Alimentum -  wanting to sort of push it so we could be sure it wasn't FPIES, so we did- adding 2oz. to each 4oz. hemp milk bottle and by the mid-afternoon he was a MESS!  He was tantruming, he was unreasonable, he was pale, he was not interested in eating, or playing, or sleeping, or....it was a rough rough day and becoming more clear that we needed a new plan - a plan that did not involve Alimentum.  

Oh, and his tube?  STILL unable to use it!! It's been WEEKS, it causes him pain every day- I don't even know exactly how much except that it is too tender to touch....even watching him playing, he will guard it and pull away from something that may rub on it.  It oozes brown/yellow drainage all the time and the granulation tissue comes and goes and often bleeds.   

He needs a new plan, and we have a GI appointment coming up....

Peach fruit cups

Processing peaches while they are in season (Georgia peaches are our favorite!).  I am buying them by the case, and for the most part- Little Man enjoys the pureed peaches. However, I am wanting to give him some different textures, but can not use any sugars to "can" diced fruits so I am using some of the peach puree to put the diced peaches in. And then, for added fun- freezing them in fun shapes! 

Celebrating Food Allergy Awareness Week 2012

Aside from the fact that I am so far behind on updating here on how Little Man has been getting along (it's been a busy few months), we are celebrating Food Allergy Awareness week by raising awareness to FPIES....a food allergy of the gastrointestinal tract. Today, The FPIES Foundation launched a video created for Food Allergy Awareness Week to honor FPIES and put faces (and sentiments!) to this invisible illness.  I would be honored if you would watch it.

Good Streak comes to a halt....

Still hoping these symptoms are from the lubricant but we're in the mind game time when I start to question everything in his diet and environment....I just want him to not suffer and be a happy little boy.   Seeing him suffer or struggle is so very hard on a mom.   Not being able to stop it or know exactly what it is from to know if I'm doing everything I possibly can to help him through it is even worse.   And that is where we are at.....

We restarted the Alimentum and it seemed to be going well- clearly benefiting from the increase in nutrients (B vitamins, iron, Vit.C) he needs in his diet and the increased energy that comes with that; but there were subtle signs that had been there in the past with introduction of Alimentum as well (rosy cheeks, little bite looking spots, a washed out look, not gaining weight despite eating more and getting more calories, questionable look and smell to stools) but these aren't necessarily FPIES responses for him.  Are they his carbohydrate intolerance, if so, it is more that they are intolerance symptoms and that although bothersome- they wouldn't be doing the "damage" an FPIES reaction does.  Are they enteropathy (FPIE) symptoms/reactions?   We just can't be sure yet, and the good was outweighing the bad so we are content for now, to "ride the line".   

The Chee-Cha puffs are still going well and I ordered some potato flour and potato starch to start playing around adding that to his millet flour to bake him more things.  We stopped (hid) the chocolate- I think it's safe to say that chocolate itself (Hershey's Cocoa) can be added to his safe list but he was OBSESSED with it and was eating way too much- so he was getting the effects from that (some hyperactivity and loose stools- seriously, he was eating spoonfuls of the pure cocoa powder!).   So, that went on the shelf for now, until I have more things to mix it into so he eats the food I mix it into and not just the powder!! 

Riding along the line.....then comes the lubricant (spoke about in last post) and we saw immediate flushing and tantrums that night followed by 3 days of loose, large stools, followed by some really questionable looking stools (was that a blood clot? is that blood mixed in? what is that smell?).   The boys thought the smell was like "burned plastic".   We're guessing it is the lubricant working it's way through his system....and now we recover from that.   With a sensitive gut that is not tolerating safe foods- Alimentum is causing symptoms, potato flour and starch (given over the last 2-3 days) are causing symptoms,....he is not sleeping well and last night he was up every hour or so and then gave up and got up for the day at 4am.  Not.good.signs.  So the guessing games begin....issues with Alimentum (sugars, soy oil)?   Reactions to the potato flour or starch (cross contamination with the brand- King Arthur's), or all just sensitive because of his inflamed gut??

And then there is the tube....the tube change was successful and it looked GOOD at first, then the lubricant issues kicked in and we held off using it became clearly painful for him again- bleeding and oozing and inflamed granulation tissue again.  

I don't even know what step to take next....We pray that we recognize the answers to our prayers on the next directions he needs for healing....

Speech Therapy Evaluation

I have expressed my concerns for his speech for many months- recognizing that he wasn't at where my other boys were for his age and stages; but since he has always fallen "in the window", this has never been something that has been recommended as a further evaluation.   He processes concepts well and follows directions, he can say words- he just doesn't put everything into sentences like he should be doing by now, and he can't articulate what he wants to say, also some sounds are mixed up.   

Well, that is pretty much what the evaluation told us as well.   He actually sits right on the line- not necessarily needing speech therapy from a medical standpoint because he can repeat the words (some with mixed up sounds), he can process, and follow directions as well.   He just has lacked the practice in the everyday speech- with so many hospitalizations and illnesses, he is just understandably behind the curve.    She did recommend that we seek private speech therapy and get an evaluation through the school system as well because he would benefit from being followed closely since clearly his illness has put a kink in his learning and practice of his vocabulary.    

It was a good appointment- it was good to see him "tested" on what he can do, and what he can do when prompted/taught. There were some areas that covered concepts (understanding pieces of a story) and he was able to complete those, she commented that those were at the 4yr.old level.  I can see area's that we could work with him more on, practicing sounds and repeating words, and I see areas that we will clearly need help helping him.  So, we will definitely check into the private speech therapy and the school system evaluations and see what help we can get.  

My goal is to get help so we can help him optimize his potential and lessen the gaps that the chronic components of his FPIES has created. 

It's Proprietary....

....means the company does not need to release the information of the ingredients.   This very often means we can't take the risk of using their products.  Unfortunately this appears more often than you would expect- especially with allergen acts and labeling laws to help protect individuals.  The sad thing is, I'm not asking for someone else to protect my child, or change anything about the way they do things- but I do need all the information to be able to protect him myself.   The answer "it's proprietary" means Russian roulette to us.  It means I can do the research as far as it will take me to know what the ingredients are typically derived from and take the chance, or avoid altogether.   

Well, this reaction wasn't even from FOOD.   It turns out the lubricant (Surgilube)....which doesn't have a label law since it's not a food but being a chemical, it has what is called a MSDS (Material Safety Data Sheet)    The ingredients are Hypromellose and Propylene Glycol.   I recognize propylene glycol immediately- that is a-typically-derived-from-corn ingredient.   Hypromellose is a substance made using ethanols- and what are ethanols a gas of?  You guessed it.  Corn.  

Of all the things you think you never even have to think about.  But this is the 3rd time he has had reactions to lubricant.  Once was when we used it to help with his severe dry and cracked lips the first time he was on TPN (he was dehydrated on TPN?  Yeah, well...).   Anyway, the next time was the NG tube.  And his scope at the time of his G tube placement showed inflammation - we suspect due to the darn lubricant (that we didn't even realize was being used until the 3rd replacement of his tube; a tube replacement without it resulted in no symptoms and better tolerance of his feeds).   

I am still kicking myself for not registering that she was using lubricant to replace his Gtube last Friday.  Yesterday afternoon was the first day he started showing no further symptoms- since Friday,he's run through the symptoms of flushing of his cheeks, loose stools causing an itchy, sore diaper rash (acts yeasty but doesn't look yeasty), decreased appetite,increased whining, decreased play, and some sleep disturbances, 5 day of symptoms from a tsp or less of lubricant!  Lesson learned, finally....no more lubricant.    

I called the NP from the surgeon's office and spoke to her about it, verifying that she did indeed use a small amount of lubricant.  She was baffled that this would cause symptoms but assured me that she would add this to his list of allergens on his chart to alert others to help us avoid this in the future.  But like my hubby pointed out- she wouldn't have checked allergens before using lubricant anyway!  It will be there, for verification and alerts but we still will have to remain vigilant.   Corn allergy really, really sucks- we aren't just avoiding foods....

Either way, we're past it.  His tube site looks much better!!  He isn't acting like it is as tender but it is as if he is just now starting the true healing process.   We haven't used it in 2 weeks, or longer? So discouraging, but just trying to hold out hope that if we let him guide us and let it truly heal- we will be able to use it soon.   He is drinking 2oz. of the Alimentum with every 4-5oz.bottle of hemp milk so he is getting some of it everyday- which is really good because once we are able to use the tube, we won't have to do as many "feeds" and yet will still get the benefits of the feeds and using the tube to keep him thriving and safe, and his quality of life and ours, increased.  We still hold out hope to get there anyway....