“My ear tickles…”

The same day Nolan had his GI appointment, Lilyann had a pediatrician’s appointment for ear pain.  OYE, I say!  Lilyann started to complain of ear pain (my ear tickles) and she had woken at night two nights in a row.  When looking at her ear [with a flashlight] I saw blood and dried blood.  Her ear also kept getting red.  I didn’t want to end up in the same boat as the last ear infection…a month of ear drops and doctor’s appointments, so I decided to take her in.  Her ENT, of course, didn’t have any openings and her pediatrician didn’t either, so we saw one of Dr. H’s (pediatrician) colleagues.  

Yep, ear infection!  And yep, just her left ear (it’s always just the left ear, since the tubes were placed).  Antibiotic ear drops, 2x a day for 5 days!  Here we go again.  As you can imagine Lilyann remembers how ‘good’ it feels to have ear drops put in your ears.  This time, she only ‘fought‘ me for the first day or so.  PROGRESS!

But we made it through it, all five days without any major issues.  NICE change!!

The last day of her antibiotics was Sunday, January 16, 2011!  That day at church, the Lord touched me during worship.  It was one of the times where I just cried out to God and He ministered to me.  At the time, I thought it was because of Nolan GI appointment and Lilyann’s ears.  But looking back, I now know it was God preparing me for the week ahead. I was weeping…mascara marks on my shirt.  I could not hold in ‘my emotions’.  Some of you reading this may not understand what I am writing about, but I pray one day you will.  My Spirit was being spoken and ministered too!  Again, it reminds me of how great our God is and how personable He is to us.  He truly goes before us in all we do and say. 

Read our next post to find out what God was preparing me for. 

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How I mark progress…

On January 11, 2011, Nolan had an appointment with a new pediatric GI, whom we will call Dr. D.  We were referred by Dr. S, allergist, to discuss toilet training issues.  I also had alternative motives to discuss possible scope!  It is this nagging feeling in my gut that there is more to Nolan’s story that what is known thus far.  It seems Nolan has numberous ‘intolerances’, outside of FPIES triggers that should signal to someone that there is more to this story.  Yet, he keeps getting pushed to the side, since he DOES have a diet, since he is GROWING & GAINING.  And I understand the other side, but to a mother it doesn’t seem fair to assume there is no reason to be concerned. 

Anyhow, I have digressed.  Dr. D! 

I got asked hundreds of questions by the ‘fellow‘ who was working with Dr. D (which is a growing annoyance for me…. spending 98% time with the ‘fellow’ not the Dr.)!  We talked mainly about his stools.  I gave an article about FPIES and brought in my notes for them to copy.  When it was time for Dr. D to come give me ‘her results’; again I was shocked and not prepared for what she was about to tell me.  Dr. D offered to refer Nolan to OT for his ‘holding issues’ regarding toilet training, but we agreed it was something that could wait given his sudden decrease in interest and age. 

So what was so shocking? 

Dr. D told me that Nolan was constipated.  HUH!  She prescribed Nolan a ‘Miralax’ regimen to do indefinitely.  First, anytime a doctor jumps to a medication; I get upset.  Second; indefinitely is not an answer for something I don’t even think exists. 

I expressed my disagreement and asked for them to explain why they believed so!  They explained why they thought so, but it just didn’t agree with my motherly instinct. They showed me pictures (to take home) of what stools should look like.  Once I was home and calmed down some, I tried to understand why again she would say this.  In the end, I believe it was in the way the questions from the ‘fellow‘ where worded, and miss-communication!  I honestly tried to fathom any information that I could, in case Dr. D was right.  I absolutely agree Nolan needs more fluids daily.  So this has become one of my newest missions in life: increase Nolan’s daily fluid intake. (remember all he has to drink is water)  But, NO, I did not and have not started the ‘Miralax‘ regimin.

Dr. D also stated that she would ‘consider‘ a scope plus look at disaccharides in the event Nolan has another FPIES reaction.  I couldn’t get a direct answer from her if she believed Nolan had FPIES or not.  When I asked what food challenge she would do first, she stated soy!  Well, that was before I told her about the muffin cups story.  She wanted to see Nolan in 3-6 months. 

How did I mark this a successful doctor’s appointment:  we made progress

She is willing to consider a scope, willing to assist with food challenges, and at least somewhat interested in Nolan!  

We will have to wait and see!  I am not 100% sure I could trust this Doctor’s answers if she were to perform a scope. 

 

My front tooth

The eve of Christmas Eve, Nolan stayed the night at my sister’s house, Ti-ti’s.  Nolan soon found his interest at Ti-ti’s: Netflix + Thomas the tank engine videos + the computer.  He had headphones and could control the volume himself.  He LOVED it!  Well as my sister was making dinner, Nolan was watching a video of Thomas and slipped somehow and knocked his tooth (front left one) on the coffee table.  He cried and there was some blood, but it looked more like it hurt his lip then his tooth.  He ate fine! Justin and I were having an evening to ourselves, so my sister didn’t want to call, especially since she thought it was fine.  The next few days Nolan was a little bit fussy, but it was Christmas Eve, Christmas Day and lots of family gatherings.  Sunday evening, Justin and I decided that we would have his tooth get looked at by a pediatric dentist.  Both of us didn’t think anything was ‘wrong‘ but wanted to have it looked at anyways.

I took Nolan to the pediatric dentist down the street who took Nolan’s insurance.  I was NOT expecting to hear what I heard.  They needed to extract his tooth and it needed to be done immediately.  They said there was an  abscess and infection would follow and his pain would increase if it wasn’t dealt with.  I was floored.  It gets worse: Nolan couldn’t have the sedative they use and the dentist proceeded to tell me “he still needs to get it out..he will remember, but he will put a blanket around him to keep him from grabbing.”  No other options?  No other drugs?  So I scheduled the extraction for two days later (so that I would have enough time to research and make sure this was the only option). 

Option #1: I found a compounding pharmacy who told me they would be willing to compound the sedative drug so that it would be suitable for Nolan.  In order to do this, they needed to speak with the Dentist.  The dentist said they were not willing to work with a drug they weren’t familiar with.  I was becoming more and more infuriated.  I told them I thought it was odd and inhumane that they would be willing to extract my son’s tooth without any pain reliever or drug. This dentist was not even willing to speak with the pharmacy. 

NOT EVEN WILLING! 

Option #2: Find another dentist who would be willing to help.  This was complicated procedure I found out.  Given’s Nolan’s age, insurance, and timing (many offices were closed between Christmas and New Year’s) this was becoming an impossible task.  I even called my cousin, on vacation in Chicago, who is a non-practicing dentist who knows about Nolan’s FPIES for her advice.  At this point I was loosing my confidence in this first dentist: her practices seemed more and more shady by the hour.  I tried everything I could think of.  I called three ER departments to speak with their dentist on call.  I called dental schools’ ‘clinics’.  At this point I was still under the assumption that Nolan’s tooth had to be taken care of pronto, or else.  At 6 pm that Monday evening, I told myself there was nothing else to do and to just rest the remainder of the evening. 

SOMETIMES that is all that can be done.

The following Tuesday I called my cousin (different one) who is a practicing dentist to see if they would be willing to see Nolan to even know if he needed his tooth extracted, etc.  After the first dentist would not release his x-rays, my cousin suggested a pediatric speciality dentist office they would refer Nolan to, if he needed it extracted. 

They got me in the same day!! 

Thankfully my mom has Tuesdays off of work, so I was able to take Nolan by myself.  Nolan was his exceptionally charming self.  I brought an article about FPIES to the appointment.  Every dentist on-site read the article and were positively interested in him.  Two dentists came in to ask questions, because they were genuinely concerned about Nolan.  Pediatric Dental Specialists specialize in special needs pediatric cases.  I was so utterly impressed with their professionalism and more importantly their care in Nolan’s health.  Such a drastic difference.  The dentist who examined Nolan was appalled at what the previous dentist said.  I am sooo glad I trusted the mother’s instinct.  This dentist didn’t see an abscess or infection but noted the tooth was loose and therefore an abscess or infection could occur.  She ordered for us to come back in a week for a re-check.  She warned the tooth still may need to be extracted, but she wanted the tooth to have time to try to heal itself.  AMAZING!!!  She re-assured me they would not take out a tooth without any medications!  My stress level rocketed back down to normal level and we went on with our day. 

The first dentist meanwhile (after I called to cancel the surgery) called to ask for the information about the pharmacy.  I professionally explained that we had found a dentist who was willing to help Nolan more responsibly.  I told them it was un professional, in humane and ridiculous she would consider doing such a procedure to such a young patient without consideration of him.  I told them it was a slap in the face that she would be willing now to help after the hours upon hours I had spent finding another suitable dentist.  I told them we were done with their office and no reason to continue the conversation. 

Later that week, Nolan was visibly in pain and not eating well and I knew his tooth was starting to bother him, as were warned it may.  I called the dentists who were on call from the New Year’s holiday.  I was given a plan of action of going to the hospital they had privileges at if he started to get worse or the pain was intolerable.  We “eeked” it through the weekend and to our follow-up appointment. 

The result: Nolan’s front left tooth had to be extracted.  It was a huge bummer for me, but Nolan took it like a champion that he is.  They were able to give him a numbing drug as well as a nitrous oxide.  After he calmed down from the surgery, who would have never ever known anything had happened.  I got a compounded pain reliever in case Nolan needed it.  I gave him one dose of pain reliever, more cause I needed it.  He never once complained about pain.  He ate crackers the same day and was very happy to play with his sister.  It was confirmation to me, that his tooth had been causing him pain and this was the correct decision.

It has taken me some time to still be ok with the idea of my son not having one of his teeth.  He is absolutely fine with the idea and was extremely happy to have the tooth angel come and give him a Thomas the Train puzzle! 

Again, Nolan is my little brave noble champion!  I am so proud of him! 

I grieved the loss of my son’s tooth, because I felt like Nolan wasn’t given the proper chance to keep his tooth because of this horrible no good annoying illness, FPIES.  Without the FPIES, Nolan could have been given more of a chance to save his tooth (medication and time)!  I felt as though FPIES took my son’s tooth and it made me mad that Nolan again was given the ‘short end’ of the stick.  I just wish something would come easy to him!  Not for everything to become an up hill battle.

“It’s paper ma’am”

Periodically I make muffins or bread or cookies that are Nolan friendly.  I decided I wanted to make Nolan banana muffins, or as he calls them ‘upakes‘ [cupcakes].  I try very hard to treat Lily and Nolan equal and fair, even if neither of them know the difference. 

 I guess it helps with my guilty conscience.  I think many moms deal with this: I feel almost responsible for the fact Nolan doesn’t enjoy the foods every other toddler does or adult does.  Nolan doesn’t know because he hasn’t had most of the great indulgences of American life, but I know.  I feel guilty that I have to watch him like a hawk and be sooo ‘careful’ about where we go, what we do and that we plan most things around FPIES.  

But back to the muffin cup story.

As the majority of mothers, I use paper muffin cups for his muffins, especially since we no longer have a safe oil for Nolan.  I just bought the generic store brand colored paper cups.  Well, since this was the first time I made banana muffins without any oil for Nolan, 1/3 of the muffin was on the paper cup…so I allowed him to pick off the muffin as much as possible.  As you can imagine, Nolan enjoyed his muffins.  A couple of days of this and no problems.

One day, as I making lunch for myself I glanced over to see Nolan just eating the paper cup.  I know his thinking was “this is too much work, I’ll just eat it.”  By the time I saw it, he had eaten 1/2 of the paper cup.  And of course I yelled “NO” and startled him.  I had him drink water and sat with him at the table for a minute.  He immediately starting having wet and dry burps and there were a few moments that I thought for sure he was going to hurl.  I think he swallowed it to be honest.  [EEWWW, I know.] This lasted for an hour.  Then the rashy cheeks, irritability, explosive  diapers for 4 days, disturbed sleep, decreased urination, decreased appetite, pale skin, laying on the couch, cough.  Two days after he ate the paper cups, we was moaning and tossing and crying in his sleep.  He slept with us that night and I just rubbed his tummy or  back. 

ALL FROM a paper cup. 

ALL FROM a paper cup! 

So I tried to find a number to call to ask what was in the paper cup, even though I knew that is was either soy and/or corn and coloring/dye.  I once again had faith to think it would be an easy conversation.  You sell a product, you manufacture a product, you know how its made.  Seems logical to me! 

 Right?                         W-R-O-N-G ! 

 I called a ‘800 number’ on the website, after no number was found on any of this store brand products I had in my pantry.  I was transferred to the store I bought it from.  OK?  They transferred me to a stock person.  Wait…too late. 

The minimum wage stock person just kept telling me there were no ingredients listed on the package:

  “CORRECT, I have the same package and I am calling to ask you, the manufacturer what this product was made from.” 

“It’s paper, ma’am.” 

“Correct, but obviously is has dye or coloring cause they don’t make blue and yellow trees…I need to know how its made. ” 

“The other brands don’t have the ingredients listed.”

“I need to speak with someone from your company to find out what ingredients were used to make these paper cups.”

Seriously 20 minutes of this ridiculous conversation…the stock person walked me up to the customer service center.   After having a similar conversation with the service desk and then the clerk tell me “I have never heard of someone reacting to paper cups.” 

Me: “I am not asking you to diagnose my son, I am asking you to give the name/number of the person who knows what is in your paper cups.”  

I was given the corporate number to call.  WOW!

And FYI: I have yet to receive a call!

Allergy, questions, and support

I prepare for each visit for anything Nolan-related by summarizing the past few months (time from last appointment) with dates, symptoms, how the trail was performed and my conclusions.  I also prepare a list of questions in short form.  I type these out, save it to my computer and print out a copy for Nolan’s chart.  I do this, because I don’t want ‘interpretation of what I said’ to end up as facts in Nolan’s chart. This also allows for the Dr. S to answer my questions and I don’t forget what I wanted to ask after having a 2.5  year old in a small room for 2+ hours.  [I used to do their food diary sheets, but I felt it didn’t give me room to explain symptoms and wasn’t effective in communicating that.]A

nd with FPIES, I count small victories in appointments as success!   This was a successful appointment.  FromNolan’s prior allergy appointment to this one, he had not had a pass of any kind, in fact he has had fail after fail (x4), and four more food items were taken out of his diet (for suspisicion/known trigger for FPIES) and he was regressing in his toilet training adventures.  The four foods that were removed were green beans, brocolli, avocado and olive oil.  Also he had the CBC count and saw the dietician! 

All in all, a rough few months for my little guy!

So what was the success?  My questions were listened too more (I felt), I got a referral to see a new pediatric GI and I felt they are ‘getting’ it more about FPIES and how it affects Nolan. I brought an article with me to this visit about scoping after a fail and time to heal in between fails.  Here it is: http://www.facebook.com/#!/notes/pic-protein-intolerant-children-foundation/clinical-testing-for-fpies-by-fallon-schultz-medical-advisory-board-member/179734382039379 ! 

The end result: no more food trials (after calcium, vitamin d, and an oil) for 3-6 months!  Nolan would see GI about toilet training issues and possible scope.  Nolan would be able to concentrate on being a big brother, toilet training, and letting his body heal from a brutal few month from FPIES.

Calcium…Part A

I learned from the dietician that Nolan needed 800 mg of calcium per day for his age and that on a great day Nolan was consuming 100-150 mg of calcium per day.  You can do the math as well as I can, there is a big gap there.  Vitamin D is needed for your body to absorb the calcium, and we learned that through his CBC at the pediatrician’s that Nolan is vitamin d insufficient.  (We are not even touching the iron needs, yet. ) The dietician recommended a hypoallergenic product, called Kirkman’s.  Here is the link: http://kirkmanlabs.com/Default.aspx !  I did not feel safe about this product, although I am sure they are able to help many other families, because of this:  http://kirkmanlabs.com/ViewProductDetails@Product_ID@116.aspx#b !  It didn’t say it is free from corn.  Corn, is a new suspect in Nolan’s diet, so I am trying to avoid it! 

So what does all FPIES mommies do: turn to the internet and health food stores. 

I also requested a free sample of the potato milk through this company, as the dietician suggested : http://www.vancesfoods.com/articles.asp?ID=129&Click=400 !  After receiving the free sample,  learning about the ingredients ( http://www.vancesfoods.com/darifreeorgnutrition.html ) and calling the company to clarify the source of some of the ingredients; I decided potato milk was not the option for Nolan. For me, it had too many ingredients Nolan had never had and questionable ingredients (the company was unable to disclose for ‘proprietary reasons’.)

Next step, visiting Whole Foods and talking with personnel in their health market.  We found a suitable calcium supplement based on the labeling, not the same for vitamin d and thinking about an iron supplement was too overwhelming to me to accomplish.   Remember FPIES is all about baby steps.  The very helpful personnel wrote down the information for me to research, browse their website, and call them directly.  This the product we ended up purchasing and using for his calcium supplement trial: http://www.nowfoods.com/Products/ProductsbyCategory/Category/074573.htm?cat=Minerals !  The reason I felt most safe with this product is there was no other ingredients and the allergen statement stated it was free of corn, even though it was a citrate.  I called the company and they stated it was “free of corn”.  I was very excited and thought this was a huge accomplishment. WOW, go NOW! 

We started the calcium supplement the week after Thanksgiving/first week of December.  I wanted to give Nolan a break (approx 2 weeks after last fail) and enjoy Thanksgiving.  We started very slowly: 1/8 teaspoon once a day.  I just put the powder in with his hot cooked eggs, or on his hummus with his sandwich at lunch.  We gradually increased the amount and number of times of day he received the supplement, although we never got past 3/4 teaspoon, which was about 1/2 of what he needed to completely fill in his calcium gap. 

This lasted for a month (until first week in January), until he injured his tooth (right before Christmas)  and starting showing signs of ‘something not being right’. 

Read Calcium…Part B to read the rest of the story.

WIC, CBC, & Pediatrician

The kids and I are part of a program called Women Infant Children (or WIC), which aims to educate families about proper nutrition and health for their children.  It also help financial with the costs of some foods.  You receive a ‘shopping list’ each month of the items you can buy at your local participating grocery store.  It’s income based, and has helped our family out immensely.  When Nolan was on Peptamen Junior RTF (ready to fed) formula, WIC covered the cost (which was approx. $665 a month).  If you are wondering what the income requirements are, search it under your state’s department of community health tap on your state’s website.  The income requirement is higher than any other assistance program that I am aware of.  

Anyhow, as part of this program, all those who participate have to have an appointment every 3-6 months, depending on the ‘risk level’ you are.  As you could imagine, Nolan is ‘high risk’ because of FPIES and his multiple food intolerances.  Once a year in this program you have your finger pricked to check your hemoglobin levels.  Nolan had his check in the middle of December.  The staff who does this are not nurses or medical professionals, most of them are social workers or other department of community health personnel.  I was told verbally that Nolan’s hemoglobin was 10.2, which is low.  You also meet with a nutritionist as part of the program.  They are intrigued at Nolan’s condition and I do not mind getting the awareness out there.  The nutritionist never said anything about getting his hemoglobin re-checked, but I know from past experience that I should.

We followed up with Nolan’s pediatrician, Dr. H, the week following and he had a full CBC done.  This visit gave me the opportunity to talk with Dr. H about my aggravation with Nolan’s diagnosis, lack of needed support and advice on what to do.  It was a great visit, only for that reason.  For the first time I felt like I was getting somewhere with one of Nolan’s doctors, in terms of them getting how difficult this is and to not dismiss my concerns. Dr. H and I discussed CHOP, second opinions, possible GI consult, and Nolan’s behavior. I spoke with Dr. H about Nolan having a formula or ‘milk’, need for calcium, vitamin d and whatever else the CBC may show.  We spend a good 45 minutes talking.  And although I felt horrible knowing that the next patient was waiting, I knew that in order for Nolan’s care to progress I had to do this. Dr. H got it, I felt and I pray it stays this way. She even told me that she thinks of Nolan when with her own kids, because of a particular situation.

Dr. H called me the following day with the CBC results.  In the end Nolan has an elevated White Blood Cell (WBC) count, which has always been high when checked.  We both chalked that up as being from his chronic illness.  The CBC doesn’t differentiate which WBC are high, but given what is known about FPIES, I would naturally assume it is his lymphocytes.  I also learned he is insufficient in vitamin d, needs calcium and his iron was on the low-end of the normal range.  So the good news is that I didn’t find out anything more than I already suspected.  The hard news to take as a mother: he isn’t getting the nutrients he needs! 

After getting advice from Dr. H, I decided I would start the calcium supplement first, then add the vitamin d supplement.

So, due to the Thanksgiving holiday, we waited to start calcium until the first week of December.  Stayed tuned for updates on the calcium supplement.

More than a Mommy

One week into the Coconut milk trial we saw a pediatric nutritionist, since we were referred by the allergist. I brought the menu that Nolan was eating at this time for the previous three days.  During this entire appointment Nolan was writing letters, drawing pictures, and being his charming self.  Smiling, asking questions, and pointing out objects.  He busted out his ABC song with pride and his alphabet sound song with equal pride.  He was just being the Nolan that everyone falls in love with.  

 I explained that Nolan had stopped taking the Alimentum formula and was only drinking water, but since the coconut milk trial had been going well (at this point) the plan was for him to have coconut milk as his ‘milk’!  She weighed him (29 lbs) and looked at the growth curve and decided we didn’t need to count calories.  OK! 

She explained the amount of protein he needed and that we was getting that. CHECK! 

Congratulated me that he was eating veggies and fruits. CHECK! 

He had fair about of carbs and fiber. CHECK!  Enough fat due to olive oil. CHECK! (Note: no longer consumes any oil)

She explained that the coconut milk was high in saturated fat and asked family medical history questions.  She thought coconut milk would be ‘ok’, but in a few years, we would need to have something better in the saturated fat content, considering family histories.  OK!  She also explained how to check calcium and told me how much he needed daily.  He needs 800 mg of calcium a day, and we calculated on a GREAT day he was about 100 mg of calcium. She pointed out the low calcium quality of coconut milk and offered the suggestion of trying potato milk.  Now, I have never once heard of potato milk, so I told her I would take the information and look into it.  She also told me he would need a calcium with vitamin d supplement to make up the difference asap.  She gave me information about a hypoallergenic company who makes said such supplement.  OK!  

I asked about oils, since there is much confusion (or differing of opinions among medical world) about if oils contain proteins and if they would be safe for Nolan.  Sometimes I ask questions that I have researched to see I can trust what they say about FPIES and Nolan.  Maybe that’s wrong, but its a gage I use to determine if I can trust what they said pertaining specifically to FPIES.  I dislike that it has come to this, but in the matter of protecting my children, it seems fair. I don’t agree with the opinion of this nutritionist and she plainly told me “it’s virtually impossible for a kid to react to oil, because the proteins are taken out or very trace.”   Again my response, “FPIES is highly unlikely syndrome and I have a highly unlikely kid.”  I then proceeded to ask how much experience she had with FPIES and after the nutritionist beat around the bush, she told me that Nolan was the third one in three years. When I starting speaking with her about information about FPIES, offered her an article to keep and telling her about the CHOP foundation, she began to lead me out the door.

So I ask these questions: 

Why o why is it so hard for people in the medical world to accept that FPIES exist and to challenge the way in which they have been taught?   

In a world of political correctness and ‘open-mindedness’ why is the medical world not open to new possibilities?

Is it that the person trying to educate or inform them doesn’t have the same degree as them, or hasn’t gone to medical school?

Is it the social class that still exists today in America working itself out?

Or is it people get prideful or some sort of intense emotion when you challenge them and they know that in some way, the one challenging them may know something?

I hear this frustration of many mothers over and over again with the specialist they WANT to rely on to help them with their children with FPIES.  I WANT a doctor to tell me what, when, where with Nolan and FPIES.  I am tired of researching and trying to figure out what is going on with Nolan.  We have doctors who care for Nolan, but I can not trust them to tell to do the right thing for Nolan.  Why is this ok?  Why is it when I have a question about Nolan, I run to the computer, internet, Facebook long before I would call his allergist and speak with a nurse?  In order for Nolan to succeed, in order for other FPIES champions to succeed we need to have this trust restored.   

I would much rather be ‘just Nolan’s mom’, but I am forced to be so much more.

But until the gap is filled in, I am more that Nolan’s mommy!   

Coconuts Milk

Like with the Hemp Milk trail, I was so excited at the possibilities, the nutritional component of Coconut milk I wanted this trail to work almost as much as I wanted chicken to agree with Nolan. I also regained my anticipation and day-dreamed about owning my own Vita Mix.  Afterall I already have a handful of recipes for coconuts.  I could make coconut yogurt, coconut pudding.  The water in the coconut is great for electrolytes and to boost iron.

We started Coconut milk on October 25, 2010, one day after we eliminated Alimentum formula out of his diet (see previous post).  Much like the Hemp milk trail, we cooked with it first prior to giving it to him uncooked. In case you are not aware, any food is broken down more when you cook it.  Therefore, the proteins are broken down more in cooked food versus raw food.  For instance, some who have an egg allergy are able to tolerate it when cooked in something and other are not. 

We cooked with it for two weeks (14 days).  We gave it to him everyday in some form at breakfast (in pancakes, eggs, muffins).  We noticed a few nights of slight rashes and some irritability, but we ‘pushed’ through.  After two days of Nolan drinking 2 oz. of Coconut milk uncooked: full-blown typical reaction for Nolan.   A typical full-blown reaction for Nolan includes this screaming fits and ‘demon drop’ of emotions that I have named “pain fits”; rashes on his face and butt; decreased urination; pale skin; cold; sometimes a drippy nose; a deep cough; greatly decreased energy level (laying on the couch); and his biggest trademark: liquid bowel movements.  This particular reactions caused an array of colors in his Pull-ups and it lasted for seven days.   Also trademark for Nolan (and FPIES): once the last liquid bowel movement is out; his symptoms improve drastically and usually resolve within hours.  However the cough sometimes lasts another day or two.

As with every fail or pass, I analyze why it was a fail or why it was a pass.  I try to give some sensibility to a unsensibile chronic illness.  In another way I am trying to gain control over an illness that is so unpredictable it often leaves you feeling powerless. 

After coconut milk I made two resolutions:

1) No more trails, because I don’t think another possible fail is worth it at this point.

2) Maybe he won’t be able to drink uncooked milk.  So whatever the next ‘milk’ we trail I think I may stick to it being cooked only. 

“Let’s just see…”

One Sunday morning, as I was getting the kids ready to leave for church, I decided to act upon my “let’s just see…” feeling I have been having for Lilyann and Nolan during the prior weeks, maybe even months (off and on). 

Why you ask? 

 Well, the last stop for most young kids prior to leaving the house is the bathroom.  Both Lilyann and Nolan were in the bathroom.  When I went it to check, it was mass grossness, from both of my kids.  So after changing clothes, cleaning them up and getting loaded in the car I decided that I had nothing to lose to try my ‘let’s just see…”. 

October 24, 2010 marked the first day Nolan did not drink any Alimentum formula and Lilyann did not drink any milk.  My ‘experiment’ initially was only going to last a few days to see if their ‘symptoms’ improved.  Well, as I write this (January 3, 2011) they still have not had one ounce of their respected drinks. And yes, their symptoms improved. 

Lilyann has not had another incident.  She now drinks lactose free 2% milk.  Lily still eats yogurt, will have macaroni and cheese occasionally and will have cheese if I cook with it.  However I do watch how much diary she consumes daily.  She really enjoys having her own milk.  She still calls it her ‘new milk.”  Lily has really adapted well to his change.  In fact, she went shopping with my mother prior to Christmas and she told my mom (as well as the rest of dairy section) “I don’t drink milk, I drink lactose free milk Gigi.”

I can also attribute Nolan’s solid stools to the fact we did another ‘experiment’ with olive oil.  And yes, once olive oil had been removed from his diet (beginning of December) we have seen even more improvement with his stools. Now we can count on Nolan to have solid stools, which really is a small miracle in itself!!  When we first took him off Alimentum, he went for a record of thirteen straight days without a loose stool.  It was broken after he failed a trail (see next post).

So why did my ‘experiments’ work?  And more importantly why could Lily tolerate milk prior to this and why could Nolan tolerate Alimentum prior to this?  My answer for Lilyann is concrete since lactose intolerance has been studied and diagnosed more extensively.  Lactose intolerance doesn’t typically start to show up until a child reaches school age, so Lilyann is actually earlier.  I am lactose intolerant and Lilyann had trouble (colic) with milk based formula, so I was already somewhat prepared for this possibility.  When a person is lactose intolerant is means they lack the digestive enzyme or don’t have enough of it to process  lactase, which is the sugar found in milk, or milk products.   For more information about lactose intolerance, check out this website:

http://www.childrenshospital.org/views/april07/lactose_intolerance_in_children.html

The answer for Nolan isn’t so straight forward, except to say if its unlikely I find its likely with Nolan.  Alimentum is labeled as a hypoallergenic formula for food allergies and colic due to protein sensitivity. My answer is outlined in the first six ingredients in the ingredient label on the can: corn maltodextrin, casein [milk protein] hydrolysate, sugar and high oleic safflower oil, then the sixth ingredient is soy oil.  I have never specifically trailed corn, but he ate it once in a baby food and it showed a horrid pain fest and reaction for Nolan.  We have also noticed the same (lesser degree) with vitamin c found in juices and in products that contain high fructose corn syrup, both which can be derived from corn.  Thus I have been suspicious of corn, but more as a corn intolerance.  Then Nolan has FPIES to milk (casein) and to soy (no oil can be guaranteed to not proteins in it) and has reacted to sunflower and sesame seeds.  Then last but not least, prior to FPIES diagnosis, GI thought that Nolan may have a sugar intolerance or issue.  So these are all possibilities, but since I am avoiding any reaction to occur I will be avoiding corn, as if he had FPIES to it.

 

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