Info for the FPIES- Ibuprofen for Your L.O.

Interesting info I discovered today: pharmacist at the local compounding pharmacy said it is possible to mix Ibuprofen into a topical gel for those not able to take it orally. This would include some items such as corn, which Ellie can't do, but could be an option for others.

The FPIES must-haves

This is the first in my posts on items around the house that FPIES mommies really need to make their lives easier. We are all strapped from medical bills, and often people don't know how they can help. If at any point you feel the need to support an FPIES mommy (and daddy) that you know, here is one gift that would be a great one. I received mine as a gift, and it has been fantastic to have.

THE MAGIC BULLET!

This nifty item helps to keep things contained, separate, non-contaminated, and processed in a hurry. Its great for those FPIES toddlers learning how to eat and dealing with delays, because it can make instant smoothies! Fruit is one of the first and easiest things for (most) FPIES babies to digest. And for those families with siblings, you can make a smoothie tailored for each kid without worrying about cross-contamination. It is truly a big thing in an FPIES house to serve your left-out FPIES baby something he or she watches her brothers and sisters eat. How much better can you get?

After the Bump From Baseline

The kitchen floor and newspaper incidents left us off of baseline for awhile. Elianna had to do some healing. In the meantime I found the Miralax that the doctor prescribed for her constipation. I mulled over this decision for hours. I researched and I read. The doctor promised at every turn that there is no way she could react to this; it is a chemical made in the lab that is not absorbed and passes straight through the intestines. However, when I looked at the Miralax website there was a huge warning about not using it if you were allergic. huh? Plus, there have been absolutely NO tests on children, yet it is the number one pediatric prescribed laxative right now in the U.S.

I put serious thought into this Miralax use, and my mommy instict said not to do it. I had read a homeopathic remedy for constipation was Magnesium, and so I bought pure powdered capsules at the health food store and added minuscule amounts to her bottle one time a day. This helped her to go, and gave her some diarrhea. I figured I had just gave her too much. When I told the pediatric nutritionist he advised against it at all because it could cause her to loose too much nutrients, and pushed me back towards the Miralax. I didn't want to. But I did it. And I regretted it.

I don't know if she had a full blown reaction, or if she was just cramping from the medication and then sleeping from the exhausting of those cramps and constipation pain. It doesn't really matter. All that matters was that she had SOME kind of reaction to it, and I will NOT be giving it to her again.

I told the pediatric GI and he gave me the same look he gave me when I said she vomited after eating the newspaper. It was that 'now I think we are dealing with crazy mom syndrome' look. Perhaps it was just me being sensitive and looking for affirmation that I am NOT crazy.

Household Items 101

For those of you who may begin to think of the bubble I put Elianna in as a sort of personal neurosis I have contracted, let me share with you this story. It is one of many that are now my normal.

I left the newspaper sitting on the floor. Elianna grabbed it and began shredding away, and before I could even get to her, she had it in her mouth. She sucked a newspaper page. Within 15 minutes she was violently vomiting.

A quick google search showed me what I feared - newspapers are now printed with soy based ink.

Just to Wipe a Butt

Diapers have been a problem for Ellie, well...always. If we don't give her frequent baths (in baking soda) and use very minimal wipes, she gets burning red rashes almost instantly. Her poor intestines and poo are so painful already, and then to have to wipe her with a cloth that burns is horrible. This week I bought the generic Walmart brand diapers to try, and within 24 hours she had a flaming, painful rash. This time I noticed that it looked just like her corn reaction when she had the patch testing done. Coincidence? I think not. So frustrating! Its not like diapers are cheap! I realized that I am going to have to switch to cloth. Hooray.

I am not really sure why I haven't switched before now. *pause* Who am I kidding? OK. Actually there is a list of reasons why I have not switched. I don't have the time to research the different types, I am fearful of the cost, I don't have the time to add diaper washing duty to my list, it sounds very inconvenient, the thought of changing an FPIES reaction poop in a cloth diaper does NOT sound appealing, I have visions of poop everywhere, my learning curve can not possibly go steeper to add one more thing, and on and on and on.

Alas, we can no longer continue to go out of the house without baby wipes, and the reality is I spend a ton on expensive disposables so that she can wear them. So chalk one more up to FPIES - we move on to cloth.

The Kitchen Floor

I swept the kitchen floor three times today. Yes, I reluctantly claim OCD tendencies, but in this case I count it a God-given gift, because the health of my child depends on my kitchen floor.

Picture this: One curious toddler who has just learned how to walk and explore. She runs rather than walks, and climbs faster than the speed of light. (When I took Elianna to Stride Rite for her first 'real' shoes at 13 months old, I sat her down long enough to get out my ATM card. As I sat the card on the counter my four year old began screaming 'mommy! mommy!' I looked and Elianna was already out the door and around the corner, having escaped into the mall. holy cow!)

Picture this: That same toddler can not have even one CRUMB off of the floor, left under the table, that you accidentally missed with the broom, or else she will have flu like symptoms complete with cramping and pain, possible malnutrition, and internal shock for weeks.

We have our entire kitchen and dining area gated off. But sometimes the gates don't get shut all of the way, or sometimes I have swept and am not cooking and no one is eating...so I let her in. Shortly after getting her to baseline and beginning the journey of figuring out how to trial foods the 'right' way, I glanced across the kitchen and saw Ellie use that famous toddler pincer grasp to pick something up off the floor. I ran. I grabbed. I swept her mouth. I begged her to spit it out. Too late. It looked green. I thought it might have been a piece of spinach. Great. Green vegetables, high in protein. This might not be good.

And sure enough. Within 10 minute she was groggy and falling asleep. I knew what was coming and all I could do was watch. All FPIES mommies know. 30 minutes later she woke up screaming. This time she was feverish, and had a red splotchy rash over her whole body that looked like inflamed eczema. The crying continued. She was clearly in pain. This time there was no crazy vomiting, and we just waited for the long process of it to pass through her intestines. She would spend minutes at a time just sprawled flat on her tummy on the floor, before getting up and wanting to be held.

The cramping seemed to subside that afternoon, but it was two days of bloody poo and lethargy. She was wasted.

I hate the kitchen floor. Did I mention that today I swept it three times? I used to barely have time to sweep it at all. Now its a matter of life or death. Amazing what you suddenly have time for.

The Puzzle Continues

Typical of FPIES, within two days we knew we had a new problem - constipation. A call to the GI said to switch and try her on Elecare, which we did. Within 24 hours she was screaming her head off and vomiting like crazy. Back to Nutramigen AA we went, and back to constipation. Roller coaster up, roller coaster down.

Her recent tests came rolling back in, including the scope and biopsy that was her birthday present. The radiologist was concerned about colitis in her upper intestines. Scope was not high enough to confirm colitis that showed on the xray, but GI said it was not a concern because there would be more visible problems with her stool. (note: still do not entirely agree here, but at this time there is no point in putting her under to scope her upper intestines) I asked about doing a candida test, not realizing this had already been done by her pediatrician and was negative. I asked about probiotics. I was told that it would not hurt but the ones over the counter are not FDA approved or regulated and that Candida over growth was an Internet autism myth. Hmm. (this is another area that the GI and I disagree some on)

All I knew was the information was pouring in once again, and once again the blood was showing up in her diapers, but this time because she actually could NOT go poo. She was so constipated that every couple of days she spent time crying in agony as we rubbed her back and pushed up her knees to help give her leverage. The GI prescribed Miralax in her bottle. And shortly into baseline with constipation, she got 'something' off the kitchen floor.

Baseline, Beautiful Baseline!

The beginning of August we started Elianna on Nutramigen AA, the amino acid based formula in the category of what the pediatric nutritionist referred to as 'liquid gold'. Within 24 hours her stools changed entirely and within 3 days she was no longer vomiting for the first time in her life. We had seen such improvement with the first switch to formula that we had no idea we could see what is referred to as 'baseline'. We were excited beyond belief. We were happy. And it was great news to provide more answers to her puzzle. End of post :)