Friday, December 17, 2010

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.

Wednesday, December 15, 2010

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.

Tuesday, December 14, 2010

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.

Tuesday, November 30, 2010

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.

Monday, November 29, 2010

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.


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?

Thursday, November 25, 2010

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.

Tuesday, November 16, 2010

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.

Friday, November 12, 2010

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 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.

Thursday, November 11, 2010

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 :)

Sunday, October 24, 2010

An FPIES Birthday Party

Planning an FPIES birthday party can be sad and frustrating. Ours turned out great, and was a ton of fun! Perhaps we can inspire other families to embrace, and not just grin and bear it! Here is what we did.

Theme: Fruit! I handmade invitations with the help of the nearby scrapbooking store. Using fruit stickers, paper with little recipe cards, and matching papers, I wrote the following:
Handpicked by heaven for our family tree,
The sweetest fruit of summer there ever could be,
With a smile so bright it could never fade,
She's the finest little produce that God ever made!

Inside I wrote: Please join us friends and family for a bumper crop of fun, as we celebrate the special day Elianna Joy turns 1!

Decorations included summer colors of balloons, streamers, table covers (red, yellow, green...) and plastic play fruit scattered about. We put up her birthday picture in a frame, next to a decorative keepsake plate we bought with a picture of a cake on it.

Food included a chocolate fountain and a spread of things to dunk. Mostly fruit of course, but a few odd things like pretzels. And fruit punch of course. It was a major hit!

We then had three games: Bobbing for apples, finding the blueberries in the whipped cream pie with your hands behind your back, and a lemon eating contest. The prizes were Santa Cruz organic lemonades for the kids to take home.

We diced up tiny super ripe peaches and put a candle on top so that we could sing happy birthday and have a photo op. That part didnt go as great. Oh well! And then we passed out ice cream cups instead of cake.

Overall it was SO much fun. And I am so glad we embraced it!

Wednesday, October 20, 2010

Moving Forward

At this point we were giving Ellie peaches, nectarines and blueberries, but we had not correctly trialled them. She no longer received a spoon and would only eat things that she could feed herself. This drastically limits options at 12 months old when there are texture issues. She would not touch anything, and she was also teething (seriously inconvenient when dealing with FPIES).

We had been feeling financial strain from co-pays, formula expense, time off of work, and medical bills. Deep down I knew I needed to put her on the more expensive Elemental formula to see if there was improvement, but her intake was increasing and we were talking an average of $45-$60 a can. Something was going to have to change. We were at the cross-roads, and I was not convinced we could do it financially. I expressed my thoughts to my new mom-friends online. I was looking for any insight to get the insurance company to cover Ellie's formula, and thoughts on moving to the prescription medical grade formula. One of the mom's offered to send me 7 cans of the Elemental formula Nutramigen AA. For the full amazing story click 'here'.

For an explanation of the different formulas click 'here'.

In the meantime I took Ellie to her next GI appointment on the morning of her first birthday. He has amazing patience and fantastic listening ear. We recapped her symptoms and discussed the new ones:
-reflux since birth, even in hospital had to be addressed by nurses
-fussy and seen for colic
-snotty clogged nose since birth
-upper respiratory issues
-can not hold her facing out with arm pressure on her belly or she will vomit
-never had a completely solid stool - always diarrhea and liquid
-always had sensory focused personality - sensitive to touch, likes soft, etc. hates dirty diapers, wont eat if diaper is wet, etc
-change from breastfeeding to formula meant more alert happy baby but no change in stools
-history of crying and pain

recent changes:
-straining at time to poo even if diarrhea. acts in pain, constipation.
-stool smells acidic and burns her butt sometimes
-vomit has changed to be partially curdy
-stool often has two separate ‘stages’, a liquid stage first, and then a goopy solid portion 15+ minutes later
-horrible breath
-lots of hands in the mouth for sucking and putting things back until she gags
-no solids - periodic peach juice or smashed blueberry - yet stool stays same diarrhea
-spends the night fussy and up often after having any food
-often still just randomly chokes up stomach acid, but less projectile vomit

Our pediatric GI agreed it was time to look further. The radiologist had concern for colitis in her upper intestines, but the GI was not overly concerned. He said there would be more visible evidence in her stool (bleeding). It was time to take an internal look. He conducted a rectal scope and biopsy (happy birthday Ellie). The rectal scope looked great. Everything seemed to be in her upper intestines. He gave orders for stool sample tests and said to work on collecting them while waiting for the results of the biopsy. He recapped FPIES versus EE, and the idea that her specific problems could be in her esophagus. He mentioned a concern for sugar intolerance which he said was a secondary issue to FPIES, and why she could still be having trouble with the fruits. When I asked about Nutramigen AA (the formula being sent by the other FPIES mom) he said it was not one that he kept in the office, and the he would prefer she be on one that was designed more for a toddler nutritionally.

We left the appointment with instructions to try the elemental formula, samples of Elecare, a new reflux medicine, three large bags of stool sample kits, and instructions to wait for results of these additional tests. I took a deep breath, lots of notes, and made final preparations for Ellie's first birthday party in two days.

Hello FPIES, Goodbye Life As We Knew It

And so came and went the last week of July 2010. I spent this week moving between the stages of helplessness, frustration, and anger. I was grieving. After a couple of days reflecting on the appointment with the allergist, I was determined that my new life of advocating had begun and it was time to hit the internet for resources. I spent hours upon hours, late at night researching FPIES in hopes of determining if it was indeed the appropriate diagnosis and trying to understand what it meant. How in the world could an infant not eat protein? What exactly is food protein? The questions were limitless (and still are).

A great friend suggested I try facebook and Baby Center for resources, and I hit the jackpot. Who would have guessed? Not I! What I found were other moms desperate for answers. Some were worse than Elianna, terribly worse. The information was overwhelming and came rolling in by the encyclopedia full. These moms knew way more than the doctors. The reality of the diagnosis was setting in, as well as what it meant. I looked back at the last year and realized I had never really stopped to let it soak in. We have a special needs child. And the next week was her first birthday.

In the middle of all this I was planning a birthday party, which I soon discovered to be FPIES style and very common. No cake. No ice cream. No treats. No way to blow out a candle and no cute pictures of smashing the icing. I decided, most reluctantly, to embrace our new situation, and a 'fruit theme' it became. I poured over invitations, decorations, and gift ideas in an effort to make it a special day for her in spite of her condition. And I cried. No cake. No ice cream. No candle. I cried again.

I think this is probably a major transitional time for most FPIES families. It is when the reality hits if it hasn't already. For some reason the pediatric community sees 12 months old as being some magical age where 'real' food can be introduced and breastfeeding or formula no longer becomes as critical. Children are expected to begin eating, sitting at the table, and joining in. And they know. They want it, they reach for it, and they can't have it. This was affirmed by my visit to the allergist.

I neared the end of this reflective week. I had spent hours on my knees praying, as well as on the internet researching and making connections. My conclusion: FPIES it is, and not knowing was not acceptable. I made a return appointment for the GI where I knew someone was on my side. And I pleaded for help from a small handful of women I now 'knew' from the internet. I started a written medical journal for Ellie, going back through the last year and documented what I could. I wrote a summary of symptoms and changes, and then wrote a list of recent changes and current symptoms. What became clear is that she was not well. We had seen improvement with the change to Nutramigen Lipil, but we had not seen what I now know is called 'baseline'. She refused food because it meant pain, and we could not move forward. I had to make a plan because I could not sit and wait for the allergist who had never called. Life as we knew it must change whether we liked it or not - and I guarantee, none of us liked it. Now if we could just figure out how to move forward.

Meeting the Allergist

My feeling of urgency was not reciprocated by the allergist referral process. It took several weeks to actually get an appointment and get in to see the allergist we were referred to. I was extremely nervous, and had no idea that this would begin my journey of researching and advocating. About one month later we headed to our appointment with the allergist, and it did not go as I had hoped.

It was a very difficult appointment. We waited an extensive amount of time in the waiting room, and then even longer in the patient room. When the doctor finally came in he barely stood still while talking and then exited the room in a hurry. He definitely hit one of my pet peeves - giving the impression that I had to talk fast enough to get it all in before he was gone or had decided not to listen anymore. He stood and read Ellie's file while in the room with us and asked questions about the GI's notes which(incorrectly)said that banana and rice were ok. He said this didn't make sense and he needed to talk to the G.I. and declared that we were going to do prick testing.

I at least saw this coming, because I have a history of IgE allergies and some severe food allergies. I have had my share of prick testing.

My response to the allergist was: I am familiar with prick testing as I have many of my own severe IgE allergies. 20 years ago when they drew my blood and sent it to UCD to study I was told they did not know much about food allergies and that prick testing was not helpful. I assume they know more now?

His response to me: Hmm. No. Not really. There is a lot we don't know and not much has changed in the last 20 years. The nurse will be in in a minute.

And out he went. Nurse came in. Prick testing completed and Ellie reacted to NOTHING. Not a single one. (tested for: milk, almond, cod, soy, rye, oats, barley, white potato, chicken, apple and the control)

Back in came the allergist. He wants to do patch testing next to see if we can find any leads. He needs to talk to the G.I. He will communicate with me over email or phone. He recommends we wait until she is a year old before proceeding with anything. He looked at the list from the G.I. and pediatric nutritionist. Do not trial apples. Pit fruits only. Start with peaches, apricots, nectarines. He gave me a handout on allergies (IgE) and allergic rhinitis, a handout on dietary restrictions for control of gastroesophogeal reflux that had no helpful information, and a handout with instructions for APT (patch testing).

I was extremely overwhelmed and over saturated. The appointment seemed scattered, rushed, and did not provide any helpful information or answers. The word 'FPIES' was never said, nor a diagnosis of any kind. Continue Nutramigen Lipil formula, wait until she is a year, try pit fruits first, and wait to hear from him.

As he ran out of the patient room we were sitting in I stopped him and asked about the insurance company paying for the formula if she has a diagnosis. He laughed a most irritating scoff, and said 'Have you been watching the news? Insurance wont pay for anything right now.' And walked off.

Monday, October 18, 2010

That Fateful Appointment

Nearing the end of June we headed back to the GI doctor for Ellie's blood test results and hopefully some answers. What we discussed:
Only on Nutramigen Lipil. She licks foods but most of the time will not eat them and is becoming more and more disinterested. Trigger foods result in vomiting and non-bloody diarrhea and then resolves. Foods tried included sweet potato, rice, banana, wheat products, barley, butternut squash.

I was unable to tell him if she cried more or less at any point because she had cried since birth with no visible pattern. She also slept at odd intervals and was completely unable to get on a schedule, so I could not address that as well. On occasion she did have low grade fevers that appeared at the same time as food exposure.

Blood test results showed mostly normal but some things on the low side. She showed negative to celiacs, and all IgE tests (RAST) came back negative except for a slight peanut. (I found out later that these tests were not very accurate anyway since she has to have eaten the foods for her blood to respond).

He disappeared to discuss with the pediatric nutritionist and then returned. "There is this very rare condition..." he began... "we have only seen a few"...."less than 3% of children"...."FPIES"...."I want her to see an allergist for a second opinion"...."no way to diagnose except by symptoms and process of eliminating anything else it could be"...."we dont really know"...."not a lot of info"...."there is another option for formula we should try"...."stop giving her foods for now"...."establish a plan with the nutritionist"..."here is a copy of the most recent study done"...

WHAT? WHAT was he talking about? Less than how many kids? They don't KNOW anything? This was not what I had wanted to hear. June. 2010. My Ellie is 10 months old and nearing her first birthday. No WAY. Something called FPIES? Food protein? She cant have protein? Rice has protein? So do green vegetables? All food? I just did a lot of nodding and repeating. The plan? Start with the least allergic foods with the lowest levels of protein, preferably all organic. Start with apples, apricots, plums. Nothing else. Keep with the Nutramigen Lipil. Soon she will be a year and we can try other options. And here is a referral to the allergist.

Friday, October 15, 2010

Something Still Not Quite Right

Ellie's continual discomfort and vomiting made me uneasy. I should take the time to mention that we are not talking spit up, or normal baby vomit. We are talking projectile, curdled, and large quantities. Doctors said it should get better when she started solids because it would weigh things down...such as stomach acid. Hmm. I began to research the introduction of solid foods and discovered that other countries don't share the perspective we have here about delaying foods, and in fact, the American Association of Pediatrics is considering revising their standpoint. This discovered, coupled with wanting to stop her vomiting and pain, and with the need for sleep, I dove into the introduction of solids for Elianna.

I did not take good notes during this phase because I had no idea there was a need. I grabbed all the traditional first foods and went for it, not expecting to hit a curve ball. We tried, rice cereal, oat cereal, sweet potatoes, avocado. She received the spoon well at the beginning, but after one or two tries of any food she would clamp her mouth shut and refuse. And the vomiting! It got worse and worse. For about 4 - 6 weeks I attempted to get some food into Elianna. Her stool became horribly green and disgusting with a bizarre acidic smell. Her butt burned within minutes if I didnt change her diaper right away, and she began throwing up within minutes of eating. About 6 weeks into trying food I attempted banana. Like most of the other foods, the first one or two times seemed ok. But by about the third try she was vomiting. Banana?! Really?? At this point I knew I must be nuts. How could any baby be vomiting, crying, and screaming after eating sweet potatoes, rice cereal, or banana?? Something was wrong.

I decided that maybe she had celiacs. I gave her oat cereal instead. Nothing worked! I headed back to the GI yet again and this time I expressed my frustration and concern. I want her tested for Celiacs, I declared. The GI agreed, saying that he had doubt and that we needed to start aggressively eliminating what could be wrong. Keep her on the Nutramigen Lipil, and do some tests.

(Note: She continued to gain weight and grow, staying above the 90th percentile at all times. This alone baffled the doctors and I believe continues to be a struggle for us. Oddly, her outer appearance does not match that of her inner, so 'proving' she is sick has become an issue at times. I felt there were small signs such as sunken, dark eyes and puffy body features but nothing that got attention. But more on that later)

After our appointment with the GI we headed down to the lab where vial after vial of blood was drawn from Elianna. I couldn't believe the amount they had to take!

Our fantastic GI spent much time communicating with me over email and phone. And back in to his office to discuss the results.

And the Journey Continues

November 2009 through March/April of 2010 we continued with the pattern we had established, no questions asked. No more visible blood in Ellie's stool, and she continued to grow and measure in the 90 percentile. Vomiting continued, as did stool problems, but overall we didn't question it. The crying was less, the extreme pain seemed to be gone, and we just assumed what we had left was 'personality'. This view was encouraged by doctors, and I just resigned myself to having no clothing without stains.

We were instructed to delay the introduction of solids, starting at 6 months with rice cereal, and adding vegetables and fruits. Sounded pretty standard. At 8 or 9 months we could introduce cooked noodles, lean meats, and beans. The restrictions were: no milk or soy until after 1 year, no egg or tree nuts until after 2 years, and no peanuts, fish, or shellfish until after 3 years. "By postponing diet the introduction of food allergens, the development of food hypersensitivity is delayed in high-risk infants but this does not prevent the disorder". That final statement made me think that there was no hurry to get onto solids, so I figured we would wait until a year to introduce most. By April and 8 months of age, Elianna was still not sleeping through the night. She woke frequently, cried lots, ate a LOT of formula, and was a chubby, roley-poly baby. I decided that I had better introduce some food to help her sleep at night and make her feel more full.

I had no idea that this would quickly start our new adventure and change our lives forever.

Sunday, October 10, 2010

What is Nutramigen Lipil?

It occurred to me that many might not know about Nutramigen Lipil. The GI explained at our first visit that there were two additional 'levels' of baby formula, in addition to the regular over the counter formulas that you see. The first level can be purchased over the counter, and consisted of partially hydrolyzed dairy protein. The (cow) dairy protein was cut into shorter chains for this formula which makes it easier to digest and 'hypoallergenic'. It runs between $20 and $30 a can. One of these formulas is Nutramigen Lipil.

The second level of formula is prescription, medical grade, and amino acid based. In this formula the (cow) dairy protein is completely broken down to individual amino acids so that there is no digestion needed. These formulas can only be obtained from the manufacturer, through a pharmaceutical supply company, or perhaps on amazon. They range from about $40-$50 a can. These are Elecare, Neocate, Nutra, or Nutramigen AA.

The First Diagnosis

The next couple weeks we were back and forth between the pediatrician and the GI several times. I was pleased at the amount of communication that went on between the two. I went on a drastic elimination diet in an attempt to see improvement in her vomiting and diarrhea. I had already eliminated dairy and soy, and over the next couple weeks I had eliminated all of the top allergens as well, and was down to eating mostly vegetables. There was no improvement in Elianna. Diapers were less bright red, but she was still extremely lethargic, crying and vomiting a lot, and not meeting milestones. We had received the diagnosis of milk/soy protein intolerance. (*note: they now know that the soy protein is extremely similar in structure to the diary protein, thus dairy protein issues should include the elimination of soy as well) The GI had sent us home with a can of over the counter Nutramigen Lipil, and encouraged me to give it a shot. I took one look at the back of the can and cried. How could these ingredients be better for her than breast milk? It made no sense. And the price tag on this formula was going to be a hardship.

I felt affirmed when the pediatrician thought it bizarre to tell me to stop EBF, and was on the phone again with the GI. The result was the pediatrician telling me that I had to eat, and that she was only getting worse. Sometime around 12 weeks Elianna filled her diaper yet again with blood, and I was on the phone with the GI to tell them there was no improvement with my elimination diet. The nurse called back and very firmly informed me that if I did not start the formula THAT night, Elianna would be too anemic and must be hospitalized. I became angry as she said to me, "I know this sounds counter-intuitive, and makes no sense, but you need to trust us on this one. You have to start her tonight." I hung up the phone and cried. I made a bottle, handed it to Jason, and went for a walk.

When I returned, the house was quiet, and Elianna was on the floor in the living room. She had drank the entire bottle. I walked over and took a cautious look. She was moving, smiling, and extremely active. So active that I immediately thought she was having an adverse reaction to the formula and was having some type of seizure. In my panic, Jason put his arm around me and said "honey, look at her. She is happy after eating, she is smiling, and she is active like we have never seen her before". He was right! I did not even recognize her because she was not vomiting, screaming in pain, or laying like a lump. Amazing!

Within 48 hours her diapers no longer included visible blood, and her behavior improved (less fussiness and signs of pain). Her diapers resembled that of an EBF baby, so to me things were looking fantastic. The GI had been correct, and she could not even digest the protein structure in my breast milk. We had found an answer (for now). Hallelujah!

(The insurance company refused to pay for her formula because she had not been hospitalized, and so we began footing the expense which ranged between $500 - $800 a month to feed her.)

Thursday, October 7, 2010

Once Upon A Time...

Ellie was born in August of 2009. We were sent home from the hospital with the instructions that she is 'just one of those babies that refluxes' and to 'be sure and lay her on her side' so that she does not 'choke or aspirate on her own vomit'. She was quiet and slept a lot. I found it interesting that I seemed to have had a second mellow baby. Breastfeeding was not going as well as it had the first time because she was having trouble latching and seemed to choke a lot, but the specialists reassured me that this would get better as she learned and my milk leveled out.

Home we went. Ellie continued to throw up, and it worsened. Half of her feedings ended up on the floor, my clothes, or whatever was around her. And the crying started. Her sleep was irregular, and there were times where there was no consoling her. Advice from friends and doctors told me that she was colicky, and that it was sensory. My mission was to figure out what was triggering her, what time of the day/night it was at it's worst, and in the meantime I hardly ever put her down. The pediatrician told me that there were now studies that showed infants who proved colicky had specific personality traits when they got older, and to brace myself for a less-compliant child than my first. She was just a more vocal and particular child.

Her sensory preferences were obvious. She wanted to sleep a specific way, with no light at all, and a specific blanket draped a particular way over her face. In fact, we have video of her at only a few hours old being wheeled into my hospital room while rubbing her cheek against the hospital blanket in the same way. I began the task of figuring out this little person's likes and dislikes in the hope of establishing a sleeping and eating pattern. A couple of months into charting the day I gave that up. Clearly she would not be a scheduled baby, and clearly this was personality. Right?

I wondered. I could not help but think that babies that cried all of the time truly had something going on inside of them, and that excusing it as personality was not acceptable to me. Next came the standard comments from other moms about attachment parenting versus whatever the other is called. My first born had wanted her space, but enjoyed snuggling. Ellie never seemed happy, but wanted to eat all the time and stopped crying most of the time when she was held. She sounded broken hearted if you denied her, and she was loud! Within the first couple of weeks my four year old asked if we could exchange her for a baby that didn't cry as much.

In the meantime we were in the doctor's office a lot, already. She was a squirmy baby who never stayed swaddled, and about 2 weeks old her umbilical cord prematurely tore off when it stuck to a swaddle blanket. It bled quite a bit and sent me into a panic. After a week it was goopy and still bleeding. It wasn't sealing off. The pediatrician said that it could herniate if left untreated, so we treated it with liquid nitrogen which turned it gray and icky.

At this point things get a little fuzzy, but I know that around 10 weeks old things changed. I started to notice her diapers were looking a little pink (blood) and that was unsettling. There was continued talk about my oversupply of milk and that it can cause digestive problems and the green funky poo that we had been seeing. And then one weekend we were at the mall. I went out of the store to change Ellie's diapers and when I opened it up I was horrified. It looked as if someone had dumped a melted red Popsicle into her diaper. I ripped off the outer diaper liner to see the absorbing material underneath. Yes! red! In a panic I called the doctors office and proceeded to go through half an hour of crazy conversations with advice nurses and determining if I needed to take her to the emergency room. No, she was not unconscious or passing large amounts. So it was decided I could wait until Monday.

Monday we headed in to the doctor, and the journey began. Meckles? Breastfeeding? Condition where the bowels kink and then straighten on their own? Our fantastic pediatrician wanted to be sure, and calmly tried to reassure me. Off to the pediatric gastroenterologist we went. And she wasnt even three months old.