Reflections on a year....

On a year since our trip to CHOP, since receiving FPIES diagnosis, confirmation of what we suspected, since his 1st birthday.....

I recently found a post I did on babycenter for this very trip, taken a year ago....I titled it "Anxious for our consult at CHOP", and wrote....Ok, talk about flooding the message boards but when alot of new things start surfacing or tying into my son's issues, I get a little hungry (no pun intended) for knowledge! Learning from all if you is helping SO much, thank you for listening to me! ;)
We have our appt in a week, we will travel from MN to PA for this 2nd opinion, and as my son only continues to get sicker- I am anxious to go and see what their evaluation will bring.
I know so many of you are in the same boat, and it is good to see all the support...thank you for letting me learn from you all! No doubt I'll have a few more things to add in the next week as my mind remains ON this upcoming evaluation!
If anyone has any suggestions for what to ask or say while we are there, I'd appreciate it. I got us an appointment with a Dietitian that day as well, we gave a great Dietitian here but wanted to get insights from them to bring back here too. We are just so excited at the possibility of getting some answers and recognition for what our son goes through on a daily basis.

Wow?!  We have come SO far in one year!!  One year to diagnosis, another year to healing.     We went to CHOP for the diagnosis and with the consult of Dr.Pawlowski we were able to get a handle, and control of his allergy triggers....but not after the damage to his intestines had already been done.   Which brought us to our next doctor, a GI doctor who helped heal his inflammation (and confirm his soy intolerance)!  Our next stop was the PCRCD for a consult with Dr.Jyonouchi and her expertize on protein intolerances and the "root" of his allergy and beginning stages of healing his leaky gut.  We have learned, done, and accomplished a lot in a year.  

Recently, we had a benefit for our Little Man, to raise awareness and funds for research as well as funds for his medical and specialized food expenses.   His godmother, my sweet sister-in-law, made a slideshow to share his story.   I have turned that slideshow into a video to share here: FPIES: Our Little Man's journey.

FPIES Friends!

I "met" this FPIES family online last year, when she joined the FPIES babycenter group I was already a member in.  She titled her post something like "MN families".  I remember that post as if it was yesterday and it was almost a year ago!  How exciting!  Another family close by!  Well, as long as you consider 5+hrs.close by!    We have connected on many levels and conversations online, through FPIES support groups, facebook conversations, blogs, and phone calls but we had yet to meet in person.   

Our Little Man's benefit was planned for our hometown, which was further north than they live! But we wouldn't be passing by their house on the way; but they did it one better!   They came to our benefit!  A 3hr.drive!!  They even brought Kara to meet Sam!  Kara and Sam are just a month apart, and received their diagnosis around the same time.   They both have FPIES and intolerance's to milk and soy and have limited diets.   They connected right away, as if they had known each other all along....much like we did! 

I have been so grateful for the friendship we share, the common ground shared in the crazy world of FPIES.  Friends that become like family....

Hope

Hope can come in many forms.  My hope stems from my Faith, the fingerprints of God can be visualized throughout our days.   We have been given the gift of sight, to see this in every corner of our lives, throughout the past 2yrs.  The gift given through the child of a chronic illness.   I am very well aware that it could be worse, things could be more complex, our Little Man could be more sick, have a diagnosis more devastating.  Please know, I never intend to imply that his diagnosis is the worst thing that could happen.  Although it is very difficult right now, we always have hope.   Hope for things to improve.  For his diet to advance, for him to have more pain free days than days and nights filled with pain, hope that he will continue to develop on track, that he will continue to gain weight and grow appropriately.  Hope that the means will be made available as the need arises.  Hope in the Faith that we are doing everything within His plan to help our little man heal and thrive through this illness.  Hope that even if he does not outgrow his allergies, or that if they develop into more illness, or auto-immune disorders, that God will provide. 

We have spent so many countless hours researching into his allergy, researching into helpful doctors, doctor appointment after doctor appointment.  Some helpful, some not so much but always worth that risk that it could be someone that may be able to help.   Along with that comes costs that are priceless but not countless.  

When our little man is screaming day and night, pain is with him all hours of the day, we are told an expensive prescription-only formula will help him.  It's costs are high but we do not hesitate, if this is what he needs- we will do it.   After a few months of emptying out our savings account, our insurance appeal is accepted and the formula is paid for.   God provides, we have hope.

We then have a little man who is throwing up every few days and we hear of a hospital (CHOP) that has physicians familiar in diagnosing this rare allergy....what would you do?   We got the first appointments available, and make a trip half way across the country.  We were blessed to find an allergist that not only knew immediately that Little man has FPIES but also that his worsening of symptoms and inability to heal is due to a corn allergy.   God provides, we have hope. 

We find out the prescription based formula that so many kids are able to thrive on,  is what is causing his pain and throwing up and inflammation to progress, now we must move him to a homemade formula with specialized ingredients available only through special order or natural food stores.   We can't not buy it, and there are no sales on these items, no coupons to clip.   His new formula will not have insurance reimbursement.   Just when we feel there is no way we will stay afloat for another 2 weeks, something comes up that helps us through.  God provides, we have hope. 

Little man continues to be ill and requires a month long hospital stay, providing for a family through a hospital stay stretches past our already overstretched budget.   We continue to have Faith.   God provides, we have hope. 

A specialist in Non-IgE Food allergy is found to be accepting patients through her research study.   It is half way across the country again, and we feel her consult will be a big piece to our puzzle.   The research I have spent countless hours doing shows me that it will be a worthwhile consult.   We have achieved a better baseline with him than we could do on our own, with her help we are closer to healing him.  God provides, we have hope. 

A benefit is planned in our little man's honor.  A benefit to raise awareness and funds for research but also to raise funds for his medical expenses and formula.  God provides and once again, we have hope.  

Our boys....

Afterall, the title of the blog is FPIES and Mudpies (aka, our boys and the muddy picture FPIES creates in our world).  Our boys, our 3 other boys that I don't often speak as much about because it is our Little Man with FPIES, for whom this blog is primarily about.  

But our three other boys are a big part of this picture.  It makes things more complicated and more rewarding all at the same time.   We dismissed early symptoms of little man because of what we went through with them in earlier years; but then once we realized his symptoms were progressing- it was easier to connect them to his protein intolerance's because of what we went through with them earlier in the years.  Little man has had many days of feeling ill and reactions which makes it difficult to have 3 other boys to take care; but we also have 3 helpers and little man has 3 siblings to learn from everyday.   Having a "large" family doesn't take away as much as it adds.  

Recently, we had our benefit for little man.  Our oldest W. wanted to contribute, he came up with the idea to do a lemonade stand, offering cookies, coffee, and donuts as well.   So, then our second, J. wanted an idea of his own.   We came up with a kiddie game stand- to help the kids have fun and be included.  Giving them jobs to do during the benefit helped keep them busy and out of trouble, those were my goals.   But they surpassed all goals.  People coming to the benefit were far more than generous with the 25cent charge for the lemonade stand, W. soon found himself trying to make change for a $20 while the purchaser walked away.  W. also enlisted our third son, T. to help with the lemonade stand.  W. is good about helping his little brothers, teaching them and including them.  He gave him the job of handing everyone their purchases.  It was the perfect job for him and he took it seriously and did it with pride.   J. ran his games while giving out prizes and was proud of himself for being the dispenser of fun!

We thank all who helped our boys feel included in a special and important day for their little brother.  We are proud of them and how well they behaved and managed their roles.   We are blessed parents.  We have rewarding jobs.   Who wouldn't want to get paid in giggles, smiles and adventures?



Is it all about the gut flora?

There are several articles on gut flora and gut-brain connection but I still can't quite seem to connect precisely what is happening in medical terminology.  But I can't help but take note of what I see happening before my eyes day after day as we push through probiotics and look at food trials for Little Man. 

Is it really all about the gut flora?  Is that really at the root of all this?  Isn't it amazing that "bugs" in our gut can control and influence so much of our body's functions?

As I've mentioned, we have seen some positive changes in many area's with consistent probiotics for Little Man.  What I have also noticed is that missing a dose of probiotic, or going too long between bottles (and his dose), he starts to slide backwards again and what we see are symptoms we would be watchful for in a build to reaction.   This leads me to conclude that reactions in atypical FPIES really are about the gut flora environment....is it the leaky gut, what about 'die off'?  Either or both. 

In short, leaky gut comes from having dysbiosis, having too many "bad" gut microbes and too much yeast/fungals that take up more space and push through the intestinal wall- making spaces between the tight junctions.   These "holes" is then where whole proteins pass through and thus become allergenic as the body perceives them as toxin (being they are not fully broken down); but this would also be where toxins pass through- toxins from the release of bad gut bacteria "dying off".   This release of toxins into the bloodstream has a whole range of adverse effects on you.   It is thought to be at the root of many gut-brain disorders as well as auto-immune disorders of inflammation.  It sure makes a lot more sense as I see it play out, piece by piece, with Little man!

We had a beautiful "baseline"- with his hemp milk formula, occasional millet and peaches, combined with consistent probiotics.   Little man is missing nutrients in his formula- mainly Vit.C and B vitamins- these missing nutrients will be critical to moving to the next steps....but can we move forward without them?   We wanted to try, to help him with his anemia.   Trying Elk does not bring on any FPIES looking symptoms and he enjoys eating it for 3 days.  By the 4th day, he is becoming a Dr.Jekyll/Mr.Hyde kind of boy and he of course refuses the Elk meat.  He also eats much less of his formula. What is this about?

Is the addition of elk changing his gut flora just enough?  Probably?  His body needs to process through the changes stemming from his gut flora.   And now we question how to push through- with a off and on cranky little boy who doesn't want to continue eating the food we are trialing; or his formula! 

Coconut is supposed to be an natural anti-fungal.  If these symptoms are from the fungals taking the opportunity to feed off this new food by products and multiply to unhealthy levels again, we need to control that.   We have been working through small amounts of coconut for the past month or so.  I make some 'crumbles' with coconut manna- and they are yummy.  He loves them.  Then I try to put some coconut oil (manna) in his formula- to begin to replace the not-so-healthy safflower oil.  He refuses to drink it and then we play bottle battle for half the day.   Finally he starts drinking his formula (without coconut) again and begins to feel better and we see less of Dr.Jekyll/Mr.Hyde and more of the calm little man we know is under all these symptoms.  

This is where my thoughts were months ago, that once we began food trials strong again, that it would need to be carefully chosen foods, and likely rotated through- so no symptoms get overwhelming (for him or us), so his body has the time in between to re coop and win these battles.   It will be a long process, but I know it will be worth it to get him a better menu. 

Two Year Well Child

Little Man's birthday is next week, so we got an appointment scheduled and completed yesterday.   First on the agenda: weight check.  Little man is now 24#8oz. and 34" tall.   He is in the 19th%tile for height and 12th%tile for weight.   Holding his own curve, although it looks like a bouncing ball all around the 10th%tile line- he does stay around 10th%tile.   One the growth chart, it is more about the curve than about the number.   A pound or two at this age is all that separates from one end of the curve to another.   At his highest (at 8# at birth, he was 57th%tile, he hovered in the 40th%tiles for those first 6mo, and then took a plunge from Nov.2009 to January 2009, this is after we tried soy for the first time and when began to multiply quickly, except his weight.   He maintained his own curve again until after corn fail when he hit a 5%tile low, not dipping that low again until after soy challenge fall of last year.   The patterns present themselves when you look at it all laid out on the growth chart graph.  I follow his weights not because I want to obsess over every ounce but because the patterns of intakes and outputs can tell us a lot about what is going on in his gut- healing or inflammation? Absorbing nutrients or malabsorbing them?  

Height taken, it is off somewhere because his height curve is a bouncing ball too....that doesn't make sense.  People don't shrink like that.  But there are a few weights like that too- done in off-pediatrics floor appointments, where I want to just say "don't record that, you didn't do it right anyway and his growth chart is enough of a mountain range".   He is much shorter than his brothers at this age, after all their daddy is 6'3".  But maybe he simply will take after his French ancestors (my dad), so then he's right on track.  

The nurse enters his height and weight in the computer, and prints me the growth chart. She hands the paper to me and Little Man grabs for it, takes it and "reads" it- as if he is studying it.  This gives the nurse a good chuckle.   He does this a lot with books at home as well, full intent into the book- as if he is reading it.   I admit, it is super cute.   The nurse is surprised that he does that a lot.  I comment he does it with writing too- uses a pen/pencil with paper and will look and draw as if with much intent.   She asks to see him do it, so I hand him a pen and he promptly takes it and starts to "draw"- complete with tongue sticking out!  It was priceless and made her day.   "See you later" he says to the nurse, her part is done and in comes the pediatrician.

Quick discussions about his weight gain, and current measurements.  He is growing proportionately, and appropriately at this time, and that is encouraging.  Next is his development.  I check off on a "scoring" sheet for things he should be doing at this age.   He "scores" at 2yrs.3-6mo. on everything which is good that he's meeting base milestones but I already knew that.  It continues to amaze me that he isn't further behind, with everything he goes through.   That said, I don't agree that he is in the 2yrs.3-6mo. milestones category, not if the category's were written with his brothers milestones in mind.   But I do feel the things he may be a few steps behind on, he will catch up.  Here again, he's following his own curve and developing appropriately.  We discuss his speech specifically, I am a little concerned, or more like watchful, that his speech has "exploded".  There is a point with toddlers where they go from a few dozen words to so many you can't count.   Little man has his few dozen words, uses them well, learns a new one every day or every few days (depending on how he's feeling) but he hasn't exploded his language yet.  I'm not overly concerned, just watchful.  The pediatrician feels the same- not over concerned but agrees to be watchful, if we haven't noticed his "explosion" of language within the next 4-6mo., we can move for further evaluations.   I agree, this is a good plan.   The pediatrician adds that he feels little man is just a calm natured little boy, and will talk when he has something good to say.   He is probably right. And he is right that little man is calm natured, we've been getting a lot of comments on that lately and his daddy and I can't help but to think of the first year of his life when we were told it was his "temperament" that made him so fussy and non-sleeping, and crying all the time.   I know, in my heart and soul that Little man was a calm spirited boy- hiding underneath all that pain.  

We wrap it up with discussions of his current diet, current goals for expanding his diet, a peek at his eczema that popped back up after sucrose reaction and hasn't completely quieted down yet.  A complete exam, for which little man is so cooperative for- he has this doctor visit thing down!

And then an anemia discussion.  Last check was one month ago, do we feel he needs to be checked today?  No.....although he had a strong bloody diaper after blueberry (I will spare you the picture I took!), and has started some wood chewing again and has been more pasty looking some days, we had 3 days of Elk going strong, maybe we can replenish his stores with real food and avoid the offset he gets from IV Iron infusions?   The Pediatrician agrees we can do a wait and see, being that his physical exam looks good except his pale skin and somewhat pale in his lower eye lid.   We plan a weight and lab draw for ~6weeks from now, unless something else comes up in between.  Having a plan is good. 

Now, on to planning that birthday party!!

FPIES United Family Fund.....OOF-Da!!

OOF-Da Taco's that is!  HUGE thanks to OOF-Da Taco's for their generous donation of the proceeds from sales of OOF-Da Taco's at our Benefit/Fundraiser.    We were able to donate a sizeable amount to FPIES research, and suprassed our goal!!   Little Man's CHOP Fundraising page has just been updated to reflect that, check it out here: CHOP.  

The money is a great thing, don't get me wrong- we appreciate it to no end.   But what I am more grateful for was the manner in which it was given.  So generously, no conditions, all heart.   Parenteau's OOF-Da Taco's is close to my heart, always will be.  It was my first official job as a summer-working teenager.  I worked there for 4+summers.  It was a great first job, where hard work resulted in good pay.  Where you were appreciated for the hard work and responsibility you displayed.   My sisters followed suit and also worked for OOF-Da taco's, and my youngest sister still does.  She is a Manager and she not only planned our Little Man's Benefit/Fundraiser, she donated her time worked so that more of the profits could be donated to FPIES research.   The owner also donated his time (as if his profits wasn't enough!), and helped my sister selling taco's for FPIES research!!   OOF-Da Taco's is such a great company to work for, others donated their time to help out as well.   A-Mazing!  Simply amazing and blessed. 

I am so proud to Thank OOF-Da Taco's for their contribution and know that their generous donations, and those of others, will be instrumental in the research funds.