Happy 3rd Birthday!

The day before his birthday, I told little man that the next day would be his birthday celebrating day and the plans I had for the day (church, lunch, parade, nap, cake/presents/dinner, campfire, and fireworks).  He listened intently and looked at me and said, "play lego's with daddy?".   Request granted buddy, you can play lego's with Daddy. 

We had fun at the parade, he loved all the fire trucks, and marching bands.  Then we came home and had a (late) nap- it was a HOT summer day and we were all tired while I prepared his "surprise" (he didn't know he was getting cake with frosting!).  So I set up his presents and cake and decorations while he napped.   This was right when Hubby got a fire call page- there were a few large fires and due to the nature of the fires and the heat, they were in need of extra off-duty firefighters to come in and be ready.   So, off he went.   Little Man was disappointed when he woke up from his nap and daddy was gone- he was excited about his surprise (presents and cake) waiting for him but more excited when I said we could take it all to daddy at the fire station! (he got assigned to help man a station)....he was at the station that is literally down the road from our house.   So, presents and cake went with us to celebrate with daddy (not the first time we've celebrated at the station). He had a good birthday and was a happy little boy who got 2 lego sets!   He LOVED his chocolate frosting cake!!! He licked the frosting off of all the cupcakes (which were really just his regular millet muffins).  The chocolate frosting was made from a recipe for chocolate syrup = oil, maple syrup, and cocoa- I boiled it and it thickened up nicely= frosting!  

His birthday was a quiet day at home....well, that was what it was SUPPOSED to be!   It started out quiet, but then a stool sample needed to be taken downtown to the lab...last week his GI doctor ordered some stool studies to be done- they have to be taken in when the lab is open and within 30minutes of the sample being "fresh"....so that didn't happen over the weekend so I wanted to get this sample in right away.   I decided a trip to the toy store could be arranged for this birthday boy to make this outing NOT about going to the lab!   Off we headed and got the sample turned in and off to the toy store but the stores weren't open yet (9am), so we went to the dollar store instead where I let him have a basket and go shopping.   Later, we went to two of little man's favorite parks before heading home for nap time.   We picked up the boys from the catechism car pool and headed home to play.  Little Man hasn't been feeling well, but he wants to play- so he will be playing nicely for a few minutes and then he will turn and just start crying over the littlest things....clearly he is just tired and feeling crappy.  I was ready for the day to be done (we still had the fireworks to do another day this week when daddy is home!).   We were sitting and relaxing downstairs and I was checking the results of that stool sample that I had turned in that morning (via an online patient portal) and found that his stool actually matches the symptoms he was having on Alimentum...bittersweet....we haven't talked to the GI about it yet so will have to go more into that in another post after we have the chance to discuss it more.  

While I was reading through this report, little man was sitting at my feet building a "fort" (more like a beaver dam)- they like to pile blankets and pillows on the floor and crawl around in and under them.   Mudpie #3 started jumping from the couch to this pile and before I could stop him, he was mid jump when little man moved to get up and his brothers knee hit his head.   At first, I was just upset at his brother for hurting him- who was finally relaxing and playing nicely and then saw some blood so rushed him upstairs to get a better look at it....yep, this is about when the panic set in because he SPIT HIS TOOTH OUT IN MY HAND!!  AGH!!  What???!!!  WHAT?!    I immediately called hubby- should I take him in?   They didn't do anything the last time we took him in, and this too looks like a clean break.   But WHY?  His brothers knee did not hit that hard- how did it knock out a TOOTH!?  Is there something wrong with the strength of his gums?  Or is it just because that one got knocked a little loose and the gum was still healing, from last week when he knocked the other one out?   Maybe.  It, of course, bled a lot but the bleeding stopped fairly quickly.   We went to visit daddy at the station to help him feel better and he is handling it like a champ (it's mommy that is still a bit freaked out by it). 

What a way to celebrate a birthday! 

"Star Cake"

Merry Muffins:

(a base I use for cupcakes, cakes, cookies, etc. adapted from Baby B's Mama

                                                                              

Mix: 3/4cup puree peaches with 3tsp baking powder (corn-free) stir and let “foam” sit.

AND/OR: 2-3Tbsp. hemp hearts/seeds with 2Tbsp. warm water

Combine dry ingredients::
2/3 cup millet flour

1/4tsp. baking soda

7Tbsp. safe oil

Mix peaches with dry ingredients and bake for 8-10minutes at 375degrees.

643 calories, 3.75 g protein, 44 g CHO and 55 g fat 

Pizzelle Waffles

Pizzelle Waffles:

Combine:

5Tbsp. millet flour

1Tbsp potato starch

1/2tsp. baking powder (Hain)

1Tbsp. Hemp seed +1Tbsp. water

3Tbsp. oil

Can also add pure maple syrup to the batter.

Mix ingredients together.  Preheat Pizzelle, spray well and scoop 1Tbsp mix onto plates, close and set darkness (3 works well).

546 calories, 3.7 g protein, 43 g CHO and 41 g fat. 

Potato Pancakes

Potato Pancakes:

2 cups mashed potatoes (or grated)

¼ cup millet flour

2-3Tbsp. hemp seeds +2-3Tbsp. water

Generous amount of oil in pan, heat oil on medium high and cook pancakes until crisp.

Recipe provides approx. 225 cals, 4.5 g fat, 27 g CHO and 5.9 g protein

My little peach.

Thank goodness for safe foods!!!  Peaches are safe.  I hope to get through the rest of the peach "food family" soon (nectarines, apricots, plums...) but for now- we are enjoying the peaches.   Little Man even asks for them by name!   We couldn't resist letting him have it the way he asked for it- whole!  No skin, but eating it whole!

Of course, I have a few dozen pictures just like these!   I am so happy to see him eat.    We are also readdressing millet.  My concern is that it was too much "grain" for him following the vitamin (corn derived ingredients) fail.   That with his acute inflammation - his gut needed a "bland" diet.  We have reintroduced it (again!) and are not seeing any signs of symptoms we were prior.   So, maybe that mystery is solved.   Why this happens is another mystery.   

Millet is a Mystery...

With all the weird symptoms we see with millet- I am ready to call it a "fail" these days but with biopsy results findings of zero inflammation- I am not sure if we are seeing a build to FPIES vs. an intolerance vs. his gut just isn't ready for a grain- even if just a pseudo grain.  I've trialed it and retrialed it so many times and looking back at my logs- all similar symptoms were there- and just kept building with each re-introduction. Although never indicating FPIES vomit/diarrhea. This fits in his delayed/build intolerance's....if we kept pushing it- would it eventually land us another FPIES class trigger food? I don't know. But here are my thoughts on what may be going on:

1. Delayed reactions:  he has always had, what we coined a long time ago as, his "honeymoon" period- he would do ok on something and then it would build and hit!

2. Constant re-exposure to a common-related proteins (also trace and cross contamination of trigger proteins) can result in chronic FPIES.

3.  If we press it- would everything related to his triggers eventually be unsafe.  Millet is in the "cereals/grains" category- but it is a seed, so a pseudo-grain. But is it closely enough related to the other grains his body has FPIES triggers to (corn)?  Rice is one of his triggers...now.  But he did not have an acute reaction to rice when we started solids, he had throwing up reactions to reintroduction of rice (after stopping it and trying oatmeal to see if I could get him to eat it better) but after taking a 3mo.break from all food and reintroducing food starting with a dozen rice puffs and getting violent vomiting did we consider it an FPIES trigger.   Also happened with dairy and soy- soy is not a clear FPIES trigger but his body was not accepting it- but it was a slower (delayed) process. Will this be the same with so many foods for him? Is it why hemp is safe, and arrowroot- as they are in their own families and unrelated to the proteins his body perceives as a threat?

How do we get past here?  How do we get off this wheel?  What do we trial next?  He has oral aversions so he doesn't want to eat just anything, but he has been reaching and begging (tantrums really) for our food.  We again, battle every mealtime, every time his brothers eat and he can't, every time I cook and he can't help me...it is torture for a mom to endure.    I just want to feed my little boy!

So, millet remains a mystery but is it teaching us something too?  For now, I have put it on the "see you later" list.   We may have already gone too far with it.  But, we'll look to retrial it again when we have more safe foods in his diet; see if we can't find a dosage that he can tolerate without symptoms -- symptoms that disrupt sleep and cause stomach aches and weird diapers, symptoms that are worrisome for building a full blown reaction.  How do we avoid these build reactions?  My thoughts keep going to a rotation diet....

Squirms in the night....

A possessed monkey another mom describes it as, I giggle.  A squirmy caterpillar?   How do you describe this dance they do?  This, my-tummy-hurts-and-I-have-gas, I'm awake-but-don't-want-to-be dance in their sleep.  

A few nights ago- just fresh on the excitement that Little Man was eating his Merry Muffins; we had a rough night of no sleep, coupled with gas? attacks.  He was just so uncomfortable.  But it wasn't constant, it wasn't inconsolable- he would console, fall into what seemed like a relaxing deep sleep; only to be awoken by a waxing/waning, what I can only think to be gas pain.   It wasn't reflux-y pain, he wasn't arching and it was lower.  He was thrashing and kicking his legs...and passing gas.

We make it through the night, and he is a happy boy in the morning.  What is this about?  These are his safe foods, safe ingredients to make a safe food- muffins.  What is going on?  Are his safe foods not safe?  Is his inflammation hurting him?  How much inflammation does he have, from the fermented corn starch (tested negative for detectable proteins but apparently still has trace or cross contamination of corn) in that vitamin trial. 

Is the inflammation making it difficult for his body to breakdown/process/digest even his safe foods?  Maybe.
I post the question for feedback on the active FPIES support group and am reminded of the other little one's that experience similar "threshold" to foods - grains, vegetables, fruits, and sugars.   Daily servings need to be monitored closely as to not cross over a threshold of tolerance (for unknown reasons, not FPIES triggers- simple digestion tolerance)- carefully teaching the body of the safe food.   Also, other mom's express success in pseudo-rotation type diets.   I have had this thought about Little Man for some time....that even when we do get "passes" for a tiny menu- we will have to watch his menu closely as his body appears to be so sensitive to subtle changes.  

Why does this happen is my pondering question.  Pondering....pondering....pondering....because if I can figure out why it is happening, then I can help him more- right?   I hope so. 

I wonder if it is similar to a flare in Chrons or colitis, a flare of intestinal inflammation so bad it causes a bowel obstruction.    The treatment for this is often bowel rest and a bland/low-residue type diet.  Millet and peaches are safe-nonFPIES trigger foods, but if he has inflammation - his body may be less able to digest the sugars and proteins in these foods.  We will have to limit his consumption for now, play around with recipe modifications, and monitor for signs of healing from the recent fail.  

The next 2 days, with scaled back amount of muffins- we have had better sleep.  Still waking up, but to eat and then goes back to sleep (mostly)...

For now, Little man continues to take his hemp milk formula very well - meeting his caloric needs daily.  Weight gain should follow.....

Very Merry Muffins!

Thanks to Baby B for the great recipe: babybeesfpiestestkitchen.  I have been able to make a muffin from Little Man's safe ingredients: millet, safflower oil, arrowroot, and peaches, add in baking soda and we have VERY Merry Muffins!  The first batch, was the other day- I made according to the recipe, with only the changes in ingredients.   The batch I made today, I made a few additional modifications.  I took the recipe down to 1/3 so that I would get just 12 mini-muffins so he will have fresh ones every few days.  I could also simply freeze some and thaw as needed but this recipe is so super easy, and he has so few foods right now- I'm ok with just making a smaller batch and making it every few days. 

I was making peach dots....

Peaches were a pass a few months ago....just in time for them to be leaving the stores as their season closed out!!!  So, I had some in the freezer (cooked, purred and portioned out in ice cube trays and piped out in "dots").   Little Man used to look forward to his "dots"; but we have run out.  The only way he will eat the ice cube trays is in a mesh feeder but he has lost some interest in that now too.   I found a baby food brand that does their peaches with no other additives. No citric acid, no ascorbic acid -- so no corn.   Plum Organics, ordered online and received the shipment this weekend.  Little Man squealed with delight when the box came in the door- as if he knew it was ALL for him!   I immediately let him open one of the pouches and play with it...he didn't like it.   I piped it out and froze it- hoping he would accept his familiar dots.  He was excited when he saw them but one taste brought on gagging.  I tried it a few more times, same results.   I think since I had to add water to cook and puree the peaches I had done, they weren't as strong tasting as this was and since he is not accustomed to strong tastes (his formula is bland) and 4 weeks of no new tastes; we're going to have to build back up to that one.   So, tonight- I thought I would cook the Plum Organics Peaches with some water and pipe them out for his "dots".  This made soup, so I had the idea to add my ever trusty Arrowroot (I heart Arrowroot!) and this worked very well.   As I was making this, I was mixing up his new batch of Merry Muffins and thought this peach blend might work well in the muffins- arrowroot will act as a binder, and thickener.  And having it cooked first might help.  Well, my experiment worked!  They are lighter and softer (taste and texture). 

I imagine I will continue to work with this base recipe- variations as we add in safe ingredients.  The BEST part of all is that he EATS it!!  ASKS for his snack, sits with his brothers and proudly eats his safe snack, sits by himself and eats his snack, licks up the crumbs....he has been eating at least 3 a day.  I calculated out the calories in the batch and then in each muffin and I have made him a 100calorie snack!   Each muffin is 100calories!! And he's licking it up to the crumbs!!   This gives me such hope for future food trials, for future recipes, for adding foods-- adding nutrients to his tiny menu that he will actually eat! 







Millet puffs safety questionable....

Since the news of villous atrophy in Little Man, I have been worried about every little thing in his diet.  Villous atrophy is most often recognized in Celiac disease but can be seen from any allergic enteropathy response.   We do not know if we will ever know what caused it but that isn't stopping me from trying to figure it out, or at least narrow it down.

Was it something he received small amounts of/trace amounts?   Was it from soy challenge?  Was it from prolonged/unhealed inflammation?   We have ruled out that it was from celiac (he is not on wheat), but what about gluten contamination?  Is his system sensitive enough?  Does he have gluten intolerance?   I do not tolerate gluten, but I do not have Celiac (confirmed on biospy due to my symptoms and persistent/worsening IBS) so despite not being able to tolerate wheat in my daily diet- I can have small amounts, in a rotation type style diet.  While nursing, when I had more wheat then I was accustomed to having, Little Man would be affected that night with gas, wet burps, and pain.  We suspected a wheat intolerance.   His first scope was to rule out celiac disease.   Biopsy and blood test do not show any evidence of Celiac disease in his system.   In July, we ruled out an autoimmune disorder by scope.   This last scope ruled out a small bowel bacterial overgrowth.   So, the questions remain: soy, contamination of something in his diet, or villi injury from unhealed inflammation.   His inflammation (refluxing pain) had started flaring before soy challenge but the soy challenge could have pushed him "over".    

I am nervous about villous atrophy happening again.   We had no idea- we know he has had many bouts of inflammation, we knew that was part of his FPIES.   Villous atrophy was an unexpected finding.   We have successfully healed it, but how do we prevent it from happening again if we don't know what caused it?   We proceed very, very carefully.  

I've had a nagging feeling about millet safety, we stopped it in Sept (after a reaction that we later discovered was from tapioca starch in Vit.C compounded Iron supplement) and I re-trialed it but he wouldn't eat the porridge anymore.  He avoided it, when I served it.  I tried making peach dots with it- he picked around the ones with millet porridge mixed in.   But,he LOVED his puffs! They have helped SO much with his oral aversion and texture practice- and pincer grasp!  I felt if he was going to have a reaction, he would upon reintroduction, even if it was minute amounts like millet puffs.   We didn't see anything that I could label as a reaction to the puffs, so we continued to let him enjoy his treats.   

Recently, another mom was trialing millet- with puffs.   The puffs were from another company.   Her daughter began to have symptoms consistent with a possible cross contamination issue (recognized from a previous issue with a quinoa trial with cross contamination issues).   I had known of her quinoa cross contamination.  But I had not thought to double check the millet puffs for cross contamination potential.   Millet is a gluten free food.   Right?   Well, before reintroducing millet puffs (hoping the 4 weeks in the hospital would allow him to "forget" about the puffs since previously he would ask for them daily)- I contacted the company (e-mail and by phone).  This was their reply (via e-mail)- my response was similar (not as much background) in my phone call inquiry as well.

Bottom line.  Millet is a grain.  Millet is a gluten free grain.   Not all millet can be considered gluten free because of manufacturing and processing potential for cross contamination.   This company makes wheat puffs and rice puffs, along with their millet puffs.   Their practice is to sanitize the line before changing products as well as discarding the first and last batches but that they do not have dedicated equipment so could not guarantee the puffs to be free of gluten.  Here is their e-mail response.   I'm not sure if it is a real answer?   Or more of a CYA (PS- I'm disheartened by how much CYA I have had to encounter on this journey).  

Dear Ms. M


Thank you for taking the time to contact us regarding our Puffed Millet. We strive to maintain the highest quality products and appreciate your patronage.


We consider gluten to be in the following, barley, bulgur, couscous, durum, graham flour, kamut, malt , rye, semolina, spelt, triticale and any other types of wheat. We do not consider any oat products to be gluten free due to the fact that studies are needed to determine the long- term safety of oat consumption. The issue of cross contamination with oat and wheat remains a concern in North America.

Consumer health and safety is our number one concern. We do not have lists of products that are specifically considered to be gluten free. Reading the label is the best way to check for the presence of ingredients which contain gluten. If gluten is a major ingredient, it will be specified in the ingredient list.

Hain Celestial Group products that make a gluten-free claim will carry the triangular Gluten-Free symbol, be labeled gluten-free, or specify Gluten Free certification by GFCO. To learn more about the wide variety of gluten free foods we offer please visit www.glutenfreechoices.com. We hope you find the information, recipes and articles to be a useful resource.

The Hain Celestial Group's labeling declares major allergens (peanuts, soybeans, milk, eggs, fish, crustaceans, tree nuts, and wheat) and we follow the U.S. FDA's regulations. We recognize the serious nature of the allergen issue and we strive to minimize risk.

We assure you that strict manufacturing processes and procedures are in place and that all of our manufacturing facilities follow rigid allergen control programs that include staff training, segregation of allergen ingredients, production scheduling, and thorough cleaning and sanitation.

Thank you for your continued support. If we can be of further assistance, please feel free to contact us at 1-800-434-4246, Monday through Friday from 7AM - 5PM Mountain Time.

Sincerely,
Consumer Relations Representative
Ref # 2182464


This last statement confuses me the most....the "potential allergen" of cross contamination is not listed on the Millet Puffs- which is why I assumed they were allergen friendly (being a gluten free grain).    A lesson learned.   But also, we may never know if that was the culprit to the atrophy.  Both major and minor ingredients of all products, as well as all processing procedures and equipment, are closely scrutinized and all potential allergen issues as determined by the Hain Celestial Group are declared on our labeling.