I am Tired.

Today I am tired. Insurance battles, doctors appointments, waiting on hold, daily record keeping, research, copayments, explaining FPIES over and over, and stacks of medical bills. It's taking it's toll.

I am very thankful that the battle does not belong to me.

HomeWord Bound: I am tired.

Well I Guess We Do Persimmon

Ellie doesn't put food in her mouth. At the beginning of November she would hit the spoon, spit, sputter, and fight when we could get her to even sit in her highchair. We have consistently offered her apricot puree (her favorite safe food) over the last week or so, and she has come to want it and even ask to sit in her chair for dinner. Great progress!

Today while Nana was visiting, Elianna watched us snacking on dried persimmon slices and proceeded to do the 'uh-uh-uh-I want that' noise. Oh why not. We haven't had a reaction in quite some time. I gave her some and she licked it! Then licked it again! And into her mouth it went. She actually CHEWED on a piece for quite some time, which was a major first. How exciting! I was not planning on trialling persimmon, but oh well! At this point I will take what I can get. Persimmon is a highly nutritious fruit, and has only one other family member - the date plum. So I thought our chances would be good! But no luck. She failed.

Two hours after she woke up from her nap crying. She spent the next couple of hours occasionally crunched over in tummy pain, with red rimmed eyes, and her lethargic 'I don't feel good' personality. She woke with the noticeable bad reaction breath. Some time around 3 hours she transitioned into gurgling loud stomach and the occasional hiccups. She began chewing, and often gnawing, on everything. Esophagus pain. And then about five hours later she ended with a bloody poo. Darn. No persimmons. She will be at least 34 months old (almost 3) before she will be able to try them again.

On the positive side, the reaction was a minor one. There was no violent expelling of food, or signs of shock. The blood was minimal, as was the mucous, and the cramping seemed to stop after a few hours. That means she will heal quicker than a severe reaction. It means that I most likely wont be up all night rocking her because laying down rolls stomach acid into her throat which burns. And it also means I am more hopeful that she will not take it as license to stop eating again, going back to associating food with pain. Guess we will see tomorrow when we offer her the apricot puree.

Life Continues: A Jump to the Present

From September until now, life has continued to push forward. Elianna has successfully passed and can eat these foods now: apricots, peaches, plums, cherries, and nectarines. She has had small 'licks' of blueberries and grapes, but not enough to call them a pass. I spent the last few months canning, freezing, drying, pureeing, fruit leathering, and whatever kind of preserving I could think of while the pit fruits were still in season. All I kept thinking about was what were we going to do when they were out of season and I had nothing to feed her? Thankfully I grew up in Northern California and had access to fruit straight from the orchard. Family friends have blessed us tremendously with cases of fruit 'to feed that baby'. Not all organic, but not processed or coated with anything in any way. Best of all, the fruit helped solve the problem with constipation.

In the meantime she ate a crayon and had a reaction. Safe, non-toxic crayons have soy.

She began eating large amounts of hair, fuzzies and string. We are now watching and wondering if it is PICA.

We finally head back to the allergist for atopy patch testing. (More on that in another post)

Her eczema has become full body. Some days she just has reflux and stomach pain and we cant figure out why. And she has had lots of diaper rash problems that are getting worse.

We realized that over the counter tylenol and motrin make her vomit and we need compounded medications for her. And I have begun the search for a safe probiotic for her.

She sucked on the adhesive on a cardboard box and had a mild reaction.

I have had to cut back at work in order to provide a predictable schedule for her, and have her home where we can practice eating. It's hard to give a toddler a tray full of puree to explore when not at home. It's hard to take her to someone's house and say 'do you mind if I vacuum your floor?' And it's hard to work full time while learning to be a suburban pioneer woman because your child can have nothing from the store.

Meanwhile the medical bills are rolling in and copayments continue. Now the GI wants us to send her to speech and occupational therapy for food therapy.

And I am thankful. Thankful that she has never been below the 90th percentile. Thankful that we now have 5 safe foods. Thankful that she is growing, less puffy, and turning into quite the little toddler full of personality. She never stops talking (we think she is fluent in Chinese). And her laughter is contagious.

We are making the necessary adjustments in our family, and working hard to accept the changes. They are not easy, and some days are definitely harder than others. But we have hope.

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.