Thursday, January 27, 2011

You Know You Are An FPIES Mom When....

In light of today's recent incidents, ok, well vomit is not really ALL that out of the ordinary....
While reflecting on this morning's events, I began to think I would deter from my catching up posts to this. There are a ton of these that circulate the internet for various topics, so why can't I have my own?

You know you are an FPIES mom when....

1. you are covered in vomit from head to toe, you are mentally noting how it smells for documentation purposes, and it is all in a days work.
2. you tell people that your child has an 'extremely rare immune systems DISEASE' and dont tell them it isn't contagious because you are tired of explaining what it really is, and their reaction can be somewhat fun.
3. you find yourself wishing someone gave out honorary medical degrees.
4. you have to trial a band-aid.
5. you hope it is 'just' a virus, or a cold, or an ear infection, or.......
6. you have a dated portfolio of poop pictures.
7. you understand acronyms such as MSPI, FPIES, PIC and EE.
8. you need a t-shirt that says "Please don't feed the child".
9. you have a spreadsheet on your fridge to record food eaten, time eaten, amount eaten, and if any vomiting or poop episodes followed.
10. you view words such as anal, or obsessive compulsive, or overprotective, or helicopter parenting all completely blase', and replace them with expressions like 'do you mind if I vacuum your floor'? or 'she will have ice chips with that'.

Teehee! :)

Ain't Nothin Urgent About Urgent Care

I have heard many horror stories from other FPIES and PI moms about doctors and hospital visits. We have been blessed with a fantastic pediatrician who sent us right away to a fantastic GI, and so we have had very minimal bad experiences. Just to make sure I can relate to those other moms, we were allowed to have a couple of those experiences this month.

The third weekend in January we were approaching the end of the fourth week of Elianna's respiratory problems. She had been on the nebulizer at night for almost three weeks, and by the 21st I was beginning to be afraid for her oxygen levels, especially at night when it was particularly bad. After an extremely hard Saturday night I decided it was time to haul her in to the urgent care provided by our pediatrician's office just to have her checked. What if at this point she had pneumonia?

I knew there was going to be a problem when I called to make the appointment. Every veteran mom knows there are key phrases and words that tell the scheduler to consult an advice nurse immediately, or to at least not make light of the situation. I called Urgent Care as soon as they were open, and told the woman on the line that 'my 18 month old daughter is a patient of Dr. O, and she has been having trouble breathing. I need her to have her oxygen levels checked and have her chest listened to.' 'oh.....o.k.', she answered causally. 'well, my next available appointment is at 11:45. Will you be able to make it here by then?' Duh. Did you hear me say she wasn't BREATHING?

We arrived at urgent care and the nurse welcomed us warmly into the room. 'So you are here for a cough?' she asked. ' not exactly,' I answered. 'She has been sick for several weeks and was having great trouble breathing last night. I would like to know if it is a bacterial infection or a virus, or just a side effect from her reflux.'

'oh OK,' she was partially listening. 'So..haha...her chart says she is allergic to FOOD and that is a little GENERAL so I am going to need you to be more specific and update things. We also have listed peanuts. Is there anything else you would like to add?' Tick. Tick. In my head I have to make a choice. Explain, or just say no. 'Well, she has a rare condition called FPIES where she actually IS allergic to food.' Silence.

her: 'Oh. OK. Is she on any current medications?'

me: 'She is on albuteral in a nebulizer.'

her: 'Oh. Why is that? There is no diagnosis of asthma in her file.'

me: 'Well, she has a severe corn allergy and that is the only medication she can have without it.'

her: 'Oh so she DOES have a severe allergy, and to corn? I will add that in.'

me: 'Is her diagnosis even IN her file?'

her: *tense laugh* 'Oh I am sure it is, but I am not on that part of the screen. I am in the allergy section.'


OK not really. That was only going on in my head.

her: 'Well let's measure her oxygen.' *fast forward* 'It's fine. Looks good. Its 98.'

me: 'what should it be?'

her: 'oh, 100.'

me: 'Wow I really should just avoid the co-pays and buy one of those oxygen meters for my home.'

OK. Again. Not really. Just what I was making a mental note of. Ask Dr. O about that and if that is a possibility.

her: 'The doctor will be right in.'

And he was. In he came! He asked me the same questions, and I tried to explain again. And he listened to her chest.

Dr.: 'Sounds clear.'

Elianna: *cough. hack. gag*

Me: 'OK. So it is not a bacteria or a virus?'

Dr.: ' normally we see other symptoms with virus or bacteria.'

me: 'so this is a side effect of her reflux?'

Dr.: 'I don't know. You should follow up with your primary care.'

And he exited.

Clearly I chose the wrong profession, because he got PAID for that!

Week by Week, Day by Day

The first week of January Elianna had symptoms of a reaction from a bath soap with wheat protein. By January 4th she was having a typical upper respiratory response to the reaction which looks a lot like a bacterial or viral infection. Off to the pediatrician we went for a nebulizer refill (nebulizer medications do not have corn, while all of the inhalers and asthma medications I have researched do). We ended the almond milk and went back to all formula in an effort to help her get better and eliminate any possible complications. And so ended the first week of January.

Here comes week two. I noticed that Elianna's eczema was the worst it has ever been, and that we truly needed to focus on getting her a safe lotion. That led me to the Eucerin, which she ate during week two. For details on this incident see my previous post here. I finally decided that anyone who ate lotion would not feel very good. I decided to put my energy into finding an oil that might work, and thus we trialled almond oil and it was a pass!! It has not completely fixed the problem, but so far we have seen some good improvement.

With the arrival of week three and no more 'prunus' foods to go with, I was feeling a little bit brave and purchased grape juice from the store. All of her safe foods are now out of season, and the choices are limited. I understood grapes to be one of the few fresh fruits you can buy in the store without the traditional corn, soy or dairy derived coating. Soooooo..... daring the issue of cross-contamination, I handed her a cup of grape juice on Monday morning. After two big gulps and about 10 minutes she began to have a glazed look and just sat in her highchair and stared. This prompted me to get her down, and enlist Jason is the observing. Then the reflux coughing, urping and vomiting started. Nothing projectile but she cried in pain. At about 25 minutes she began pointless running in circles around the kitchen island, which was very bizarre to watch. Around and around and around and around. This lasted for about 5 minutes at which case she stopped and we noticed that her face and around her eyes were getting puffy. We stood and watched her eyes swell within a matter of minutes. Another 20 minutes later it seemed to decrease and she was feeling better. Except her eczema was bright red and raised all over her body, almost like hives. Truly bizarre and unlike the reactions we have had prior.

Hooray for January. And, oh, yeah.....that was just the start.

Oh What a Night!

We have certainly had a lot of them since my last update on Ellie, and we certainly have had very little sleep since then as well. At the end of December I had great hope that this year would be relatively uneventful compared to 2010, and so far January of 2011 has brought in the New Year with a definite bang. Elianna did so great with her previous food trials, but the looming factor has been this nasty corn. Corn is in everything, if you did not already know that. And Elianna's huge love for paper products as a dessert has not been helpful. Fails in the past that we can now attribute to corn include the following: disposable diapers, cardboard boxes, adhesives, board books, infant Tylenol, bath soaps and shampoos, just to list a few. Oh yes, skin is the largest organ and it absorbs like nobodies business. If you ever doubted that and the effect of things put on your skin, all you need to do is watch an FPIES child do atopic patch testing and scream for two days, or give them a bath from the head down with organic baby shampoo complete with wheat protein (been there, done that).

In addition to the corn, Ellie has enjoyed a diet of hair and fuzzies. This has led us to investigate a disorder called Pica, but since she is not ingesting amounts that are harmful I can not put too much energy into another diagnosis for a child who is 18 months old and has only a handful of pit fruits that she can eat. Having food issues does seem logical, regardless of the additional problems. The doc mentioned sending her to Occupational and Speech Therapy for Food Therapy but since we really don't have anything to feed her that seems like a pointless expense right now. She is doing fine spooning herself ice chips and puree that we give her, so the texture issues will have to be resolved with time.

At the end of 2010 we were very excited to exhaust the Plum (Prunus) botanical food family by calling safe apricot, peach, nectarine, plums of all kinds, cherry, and homemade almond milk. These results became a little muddied the first week in January when she began to have symptoms of a fail, until we traced it back to a baby wash we had used on her a handful of times that contained wheat protein. This seems to have begun a January list of fails that are becoming exhausting. And I don't find it coincidental that ever since we stopped diluting her corn based formula with almond milk and returned to just formula, she has not appeared to be completely 100%. One of the many things I have (re)learned with the help of FPIES: no such thing as a coincidence.

Wednesday, January 12, 2011

Diaper Cream and Possible Lotion

I think I may have found a diaper cream to use for Ellie. Going to give it a shot and see how it goes. Purchasing through my new favorite cloth diaper vendor: Sew Crafty Baby!

Q: What are the ingredients in CJ’s BUTTer?

A: The only ingredients in original BUTTer are shea butter, olive oil, coconut oil, lanolin, beeswax, cocoa butter(deodorized, not raw) and Vitamin E. I also keep some without lanolin on hand for a couple customers who have sensitivities to lanolin, and you’re welcome to that as well. The Stick o’ BUTTer has the same ingredients, except there is no lanolin. Fragrance or essential oils are only added if you choose to have it scented. For our yeast fighting formula, we exclude lanolin and add sesame and neem oils.

Wish us luck!

Tuesday, January 11, 2011

She Ate the Lotion

Things never stop around here. In fact, today Ellie ate the Eucerin. I think it was out of affection, because her skin itches and she loves it when I rub it on her legs. She points and says "this! this!" Tonight she has bloody diapers. Soooooo for the sake of everything FPIES, I take a deep look at the ingredients of Eucerin. Remember, ignorance is bliss. Please accept my warning and read no further if you prefer not to know.

Here is what I found:

Ingredient 1 = Water. WHEW. This one is easy. I can live with this.

Ingredient 2 = Petrolatum. Hmm. is another word for petroleum jelly, or Vaseline. This is not really something that should be ingested, and has been known to cause lots of bad things, beginning of course, with skin cancer. (side note: It is no longer recommended that you rub Vaseline under a dry nose in the winter because they now know it causes a specific type of petroleum induced pneumonia.)

Ingredient 3 = mineral oil. What in the world is mineral oil anyways? Mineral oil is also marketed as baby oil. Sounds good. And it is made from minerals right? That has to be good for FPIES! No food in minerals...only rocks! My search reveals that mineral oil is...drum roll please...liquid petroleum.

OK now we are 1 for 3. Water, petroleum, and petroleum. I think I could make this at home.

Ingredient 4 = Ceresin. AKA a white wax extracted from ozokerite. Great! Wax! What is ozokerite? Ozokerite is a naturally occurring mineral oil, derived from petroleum.

uhhhh...I am sensing a theme.

Ingredient 5 = Lanolin Alcohol. WHEW! At last! Isn't lanolin from wool? It is! And the 'alcohol' version is just that, a version. SHEEP LANOLIN. Right on!

Ingredient 6 = Methylchloroisothiazolinone. hmm. That is a long word, and I can already guess that she probably should not have ingested it. But hey, FPIES is all about artificial and fake, so this may be a good one! What is it? My first link brought me this: The isothiazolinones are, perhaps the most potent allergens on the consumer market. They are very effective preservatives. It has antibacterial properties, anti fungal properties and is an excellent preservative. It appears to be in many baby wipes. And it is one of the most toxic and allergenic items on the US market. In smaller, diluted forms, it is allergy and reaction free (insert rolling eyes here). So, methylchloroisothiazolinone is a isothiazolinone, which is a group of antimicrobials, which are used as preservatives, biocides and disinfectants. That's the sum of what I found, and I am sticking to it. If you want to become a fan you can visit it's facebook page: here.

Ingredient 7 = Methylisothiazolinone. This one is shorter! But looks vaguely similar. Otherwise known as MIT, this biocide is used to keep fungus or bacteria from growing in cosmetics. Guess it gets the ones that the previous methyl-sister doesn't tackle.

SO, in summary, if you have survived this far in my most intriguing blog post, Eucerin is a combination of:
water, petroleum, petroleum, petroleum, lanolin, chemical preservative to kill bacteria, and chemical preservative to kill bacteria.

Nice. I started using this instead of my straight Lanolin because it was easier to spread and rub in. Now THAT is ironic.

Proctor and Gamble follow up

So I heard back from good 'ole P&G today regarding my questions about Ivory soap. Here is their very polite and unhelpful response, which I am sure is their attempt to keep their formula a secret:

Thanks for contacting Ivory, Nichole.

I understand how frustrating it is to have allergies! It may help to know that here in our Consumer Relations office, we're provided with the same ingredient listing you see on the product package. If this doesn’t provide the information you need, we ask that you have your physician get in touch with us listing the ingredients you’re allergic to and the product you use that might contain them. Be sure to clearly indicate the full product name, fragrance, and color/shade as written on the package. Also, please include your complete name and this reference number: XXXXXXXXX

Your doctor may fax a written request on office letterhead to: (513) 983-2881. If faxing isn't an option, please have him/her mail the request to:

P&G Consumer Relations
2 P&G Plaza
Ingredient Inquiry
Cincinnati, OH 45202

Consumer Relations
P.O. Box 355, Station A,
Toronto, ON M5W 1C5

Once we receive your doctor's request, we'll research your inquiry and hope to provide a response in approximately four weeks.

Please understand we have your best interest at heart by following a strict process for ingredient information requests.

We appreciate your patience.

(deleted name)
P&G Team

Yeah....they want a list of her allergies. That should help move the process along, and if I don't give her a bath for four weeks while waiting for their response I should be 'good to go'.

Should I bother to respond? or just move on in search of a new option? *sigh*

Saturday, January 8, 2011

What does 99 44/100% pure mean?

Ivory Soap:

The famous Ivory slogan originated in the 1800's when samples of Ivory were sent to college chemistry professors and independent laboratories for analysis. Comparison tests were made with castile soaps - the standard of excellence at that time. One chemist's analysis was in table form with the ingredients listed by percentage. Harley Procter totaled the ingredients which did not fall into the category of pure soap - they equaled 56/100%. He subtracted from 100, and wrote the slogan "99-44/100% Pure®: It Floats." This became a pledge of quality to Ivory consumers. This phrase is so identified with Ivory, it's registered as a trademark with the United States Trademark office. "It Floats" was added to Ivory's slogan in 1891.

Last night Ellie was up vomiting mucous and in need of a bath. In times like these baking soda doesn't do the job. I had recently purchased ivory soap because someone recommended it as the soap ingredient for homemade laundry detergent because it is 99.44% pure. I used it growing up all the time, and have no idea why I stopped buying it. We had no other options that did not knowingly contain corn or soy so we gave her a shower using Ivory. Today? No increased eczema, no reflux, no inflammation.....hmmm. That led me to look at the Ivory website and what P&G says are the ingredients. This is what I found:

Ingredients for the Original Ivory Bar Soap are listed on the Simply Ivory package. We upgraded our packaging Fall of 2007, but there was no formula change.

The Original Ivory Bar is made of both vegetable oils and animal fats. Two different kinds of vegetable oils are used in Ivory - coconut oil and palm kernel oil. We add a preservative (magnesium sulfate and sodium silicate) to keep the bar as white as its name.

Ivory contains no heavy perfumes, creams, or dyes. A light fragrance is added to provide that Ivory clean smell.

Other research said that the animal fat is beef tallow, but the website did not confirm that. I have emailed the manufacturer to confirm, as well as get any other ingredients they are willing to provide. I specifically asked about the masking fragrance. Fingers crossed!

On another note, the original Ivory soap was compared to Castile soap in the 1800's, which is completely pure and why Ivory did not get the 100% rating. I can not find a castile soap today that does not have citric acid (corn) in the ingredients, so we have not been able to use it.

By the way, Ivory soap was originally sold as a great bath AND laundry soap!

Wednesday, January 5, 2011

January 2011 changes in insurance requirements

1. No more copays or deductibles for preventive care (ie. well baby, etc)
2. Insurance companies are required to cover children with preexisting conditions, as long as you have had one year of insurance prior. This will apply to adults as well in 2014.
3. No more lifetime policy caps.
4. A new appeals process.....not sure about this one and looking for more info.

Also looking for more info on how this might help me. So far, no luck.

Almonds, Soap, and Diapers, oh my!

With the holidays and some new developments, things have been BUSY around here! Here is an update:
We took the leap to cloth diapers to help with Elianna's eternal diaper rash that resembles a burn and looks strangely like her reactions to her patch testing.

We trialled homemade almond milk. Its super easy to make (recipe here).

We began using soap on her in the bath - organic shampoo/body wash in one. We used it maybe three times at the end of her bath with a quick wash and rinse with the hand held shower wand.

After a week of documenting and watching, we called almond milk a pass (hooray!) but there were some other signs of reaction. The diaper rash returned and her eczema became worse than ever. The questions began. Was it the almonds after all with a delay onset reaction? Was it the bath soap? Was it the new diapers? Was it how I washed the diapers? Or the diaper fabric? This method of questioning is common and some days makes me insane!

In desperation I read the back of the shampoo bottle once more and found what I had missed - wheat protein. CRAP! How did I do that? A call to a girlfriend who battles Celiacs confirmed what I already knew; your skin is your largest organ and absorbs what it touches. Back to 1/4 cup baking soda only, and a lot of prayers that this was the cause of some reflux, pain, and what looked like the start of a full blown reaction. Please please don't be the almonds!

After three days it resolved itself. WHEW. Dumb mommy! But now we have the additional delayed response - sinus congestion, drainage, and raspy asthmatic type cough. It's working it's way out of her system, and I am SO happy it was not almonds. Who needs bath soap anyways?

On to trialling the actual almond nut now!