A Cure for FPIES?

Doing the GAPS intro has definitely given me some insight into how Henry must have been feeling during those early days on GAPS.  I remember him being very quiet, tired and taking a lot of naps the first few days.  To be honest,  I didn't blog during Henry's introduction to GAPS because I was afraid.   I was afraid it wouldn't work, that he would loose more weight and I didn't want to blog about a failure.  I was afraid to start GAPS in the first place.  Henry's GI doctor had suggested an elimination diet and that I journal for a six weeks to try to determine what foods were causing Henry's FPIES.  We had reached a point in his elimination diet where we weren't making any more progress.  Henry seemed stable, but even though he was willing to eat some gluten free foods, he wasn't gaining weight.  His diarrhea wasn't as profuse but it wasn't completely resolved either.  His appetite was decreasing to the point that after a while it was a battle to just get him to take a few bites of any food, he even refused sweet foods like pancakes and gluten free donuts. 

I had heard about GAPS but I honestly was so skeptical.   Could I seriously take my already starving child and put him on just broth?  Of course I hadn't read the GAPS book, so taking only pieces of information I assumed the entire idea was ludicrous.  As a nurse, I even questioned the safety of such a diet on a young child.  Yet when Henry stopped eating all together, broth seemed like something more nutritious than water or pedialyte, I KNEW I had to do something, and I had to do it fast.  I read the GAPS book.

For those of you who are skeptical, I understand.  I can tell you what GAPS is not.  GAPS is not a FAD diet.  Contrast to what I originally thought, it is not the ADKINS DIET, which was sold as a high protein diet for weight loss.   The GAPS Introduction is not intended to be followed for life, it is a short term nutritional plan to help quickly heal and seal the gut lining.   After reading GAPS and following the program, I doubt that you will ever be able to go back to eating a processed diet full of sugar and boxed foods, but you will not have to follow the strict introduction diet indefinately.  It is suggested that the Full GAPS diet be adhered for six months to two years depending on what ailments you started with..   Now that we've been eating this way for ten months, the thought of eating processed foods at all makes me feel ill. 

If your child is failure to thrive or has  FOOD INTOLERANCE'S that are not true allergies, I can tell you that GAPS is the best answer.  Will it be hard for you to change what you are doing and start GAPS?  Yes.  But FPIES was harder.  Not having any safe foods to feed my child was much more difficult than putting him through the GAPS program. 

What did your doctor tell you that FPIES was?  Food Protein Induced Enterocolitis Syndrome?  What is enterocolitis?   Inflammation within the colon or because of the word "entero" the inflammation can be anywhere throughout the intestines or colon.   You see this first hand when your child vomits instantly after eating, or has diarrhea for days after, blood in the stools, or cries in pain when eating a benign food that a normal child should be able to eat.   This diagnosis of FPIES is sure to be a frustrating one.  If Food Proteins are causing this Enterocolitis in your child, what are you to do?  Every food has protein in it!   Some of you have tried the broken down protein formulas like Neocate.  Sometimes this calms the body for a time, unfortunately my son and many other FPIES kids cannot tolerate such formulas.   Why would a child react to even a hypoallergenic formula?  Because the FOOD PROTEIN is not actually the problem.  Your child's intestines, his or her gut is the problem.  Something is wrong inside.  The body tries to tell us, we put a food in, and the child instantly rejects it, either by vomiting, diarrhea or both.  The reactions to the food can be violent.

 Did you think about how  the same thing happens when you have a stomach flu?  Why is that?  There is a virus lurking in the intestines, causing inflammation and for about 24-48 hours most of what you put in comes back up, this is the bodies way of protecting itself, it rejects food and sometimes liquids.   Doctors call the stomach flu gastroenteritis.    Interesting, that word sounds a lot like enterocolotis, that "itis" part also means inflammation.  What do pediatricians suggest when you have the stomach flu?   That you rest the gut, start with small sips of fluid and eventually add probiotics into the diet to help heal the gut lining which has been attacked by whatever virus you had.   Sometimes after an acute gastroenteritis patients will develop an irritation of their stomachs that last for even a month after, it causes symptoms of reflux, heart burn and intolerance to certain foods?  Interesting how similar this seems to FPIES, only it is more temporary.

FPIES is like living in a constant state of gastroenteritis or the stomach flu.  Imagine the entire gut being inflammed all the time.  Or imagine how you feel when you have the stomach flu.  Do you feel like eating  much of anything?   Maybe you start to feel better so you try a bite of banana, instantly you have severe abdominal pain and then start vomiting.  Now you NEVER want to try a banana again, or at least for a long time.   Do you see how when you are in this state of inflammation NOTHING is easy to digest.  The food isn't the enemy, your GUT is.  You have to heal the underlying inflammation and sickness inside you.  Along with the inflammation inside of you,  your body has been also been depleted of the good bacteria that normally keeps the gut in balance.  Many things can cause this disruption in normal healthy gut flora, vomiting, diarrhea, the use of antibiotics which kill the good bacteria along with the bad, and other medications.   Even doctors suggest that you try increasing probiotics after a bad case of the stomach flu.  Why is this?  Research has shown that probiotics help aid digestion, decrease diarrhea and reflux and they are important to over-all gastrointestinal health. 

The GAPS diet is a nutritional program that is designed to first heal the gut, there is an introduction diet that is very strict, but so is an elimination diet or the limited diet you are now on because of FPIES.  The beginning stages of GAPS are intended to rest the gut, you are giving only things that are easy for the inflammed stomach and intestine to digest.  You avoid fiber, which as you can imagine is grainy and difficult to process when you have adhesion's and inflammation in your intestines. 

There is a huge focus on increasing the amount of probiotics that you are taking.  Not all probiotic supplements are the same.  A good probiotic should have at least 8 billion of bacterial cells per gram and have a mixture of several strains not just lactobacilli.  Many of our children have intolerance's to food so finding an allergy free probiotic can be a challenge.  We have found one we love called GUT PRO, the entire family uses it and I would suggest it as a place to start.  Probiotic foods can also be added into the diet to aid digestion.  The GAPS program suggests starting with a little sauerkraut juice first added to broth and slowly increase.  Bubbies brand makes both pickles and sauerkraut with live bacteria cultures.

Today I was speaking to FPIES, because it is on my heart and I know that many people are looking for hope.   My son Henry had numerous endoscopes, bronchoscopies, stool studies, allergy testing and the like.  We tried NEOCATE and could not tolerate it.  I came to the GAPS diet desperate to heal my son, not just put a bandaid on a growing wound and wish it would go away on its own.  The doctors ran out of ideas for his failure to thrive, even force feeding him through a G-tube didn't fix it, because he had so much diarrhea he wasn't absorbing any nutrients. 

There is a reason that Doctors do not understand FPIES and do not know how to treat it.  American medicine hasn't linked our diet to disease.  Some doctors understand a little bit of the connection, but not to the extent that is needed to help people with serious ailments.  Once a Russian friend of mine told me that in her country she had never gone to a doctor who didn't first ask her, what is your diet like?  I found this interesting that other cultures look at the WHOLE person, the diet, the enviroment ect.  Of course there are many enviromental issues that go into how our food is processed today, including mass production, GMO foods, hormones added to foods, and antibiotics.  Also, we are exposed to numerous chemicals and toxins in our every day enviroment that we aren't even aware of, her is a short film about the chemicals in our daily lives. 

Of date, there are no medications to specific to treat FPIES, although I believe they will try steroids in the future, because this is the way that medicine deals with inflammation in the body.  The only problem is that steroids have numerous side effects and actually decrease the good bacteria in the gut, encourage the growth of Candida Albacans or yeast, and decrease the bodies immune system and natural ability to fight disease.  Doctors hope you will grow out of FPIES but they don't understand why it is occurring in so many children. 

I find it interesting that most of us mothers of children with FPIES also have issues with our guts, either IBS, celiac, thyroid disease, PCOS, or various other autoimmune diseases.  Is it any wonder that we passed down unhealthy GI tract to our babies?  Also, due to many of Henry's early issues he spent his infant days on many antibiotics, steroids and breathing treatments, which though temporarily helped his symptoms, I believe damaged his gut further by upsetting the balance of good bacteria in his gut and lead to further inflammation.

Today the only evidence of Henry's past struggles with FPIES is a tiny scare on his belly, which he thinks is a second belly button.  It is the scar left from the G-tube, and it reminds me that all the efforts I made to find an answer finally paid off, that my prayers were answered and God lead me to find the GAPS program.   I can hear the skeptics calling out?   My kid is so sick, you have no idea what I'm going through.  You are right, I have not walked in your shoes.  But my son was very sick and I was once told that he may never be able to eat like a normal child.  I can hear the exhausted mothers saying.  "It's too hard, I just can't do one more thing right now."   

I know it's hard.  But you can do it, one step at a time.  If you can't do the introduction diet right now, here are a few suggestions.

Read the book on GAPS, arm yourself with some information, even if you don't do the full program you will learn about foods that can help heal and rest the gut.

Start your child on a probiotic, find a good one like I suggested above.
If you can't do the intro right now, try to just start by going gluten free and getting started on an elimination diet first if you aren't already and then try to go to the FULL GAPS diet which is less restrictive.

For FPIES, I believe if you really want to have full remission of symptoms and the ability to eat more variety of foods the GAPS Introduction and going through the stages is necessary to allow the gut to have a rest and to heal.

Is there a cure for FPIES?   For us GAPS was that cure.   I am happy to report that my son can tolerate many of the foods he could never eat before, he can tolerate milk in all it's forms now which previously caused vomiting, diarrhea/sometimes with blood, and becoming limp and lifeless.   'We've only been on GAPS for ten months.  Only a few months after starting GAPS my son was slowly gaining weight for the first time ever in his life and was not having reflux or chronic diarrhea as he had prior.    Please feel free to contact me with any questions and be sure to check out the GAP kids link.

Finding the pieces to the puzzle and loving the results

 

                                                                   Henry, Sept 2011

We started our little Henry on the GAPS introduction diet seven weeks ago.  Months before reading Dr. Natasha Campbell McBride's book, Gut and Psychology syndrome, I had been doing my own research.   Most of Henry's life I had been asking the question--"why?"  As Henry grew the symptoms changed but the questions remained.  Why did Henry have colic, why did he have reflux, why was he constantly congested,  why did he have hives, why was he wheezing, why was he aspirating, why couldn't he eat?  Why was his stomach bloated, why didn't he sleep,   why does he always have diarrhea, why is there blood in his stool, why isn't he growing?

I'm a nurse and a mom, but I have felt more like a detective over the past two and a half years.  It's as if someone gave me a hundred piece puzzle with several pieces missing.  When Henry turned eight months old and we were admitted to the hospital for three weeks, I finally put the edges of the puzzle together.  I found out what I had long suspected, he was aspirating all his feeds, that's why he sounded like he had asthma, that's why he was always congested.  I found out he had a laryngeal cleft, which later after second opinion proved to be only a groove that did not need surgical repair.  Back then I had asked myself and the doctors--"why does a child reflux to the point of aspirating?"   No one seemed to address this.   I'll try to in a future post.  The swallow studies had shown that Henry could in fact swallow liquids, he did not have a dysfunction, he did not have developmental delays, he did not need therapy.  He knew how to swallow.  Yet for some reason after his initial swallow, some of it would "leak" into his airway.  Later at Cincinnati Children's, a FEES study would show he also refluxed and then aspirated those contents.   After the ENT scoped his airway, the answer was clear, she had never seen inflammation like this before in any patient.  She suspected severe reflux, a PH probe confirmed it.  I was faced with the worst decision of my life, to alter my sons body and to protect his airway from the liquids that were coming up his esophagus in such a forceful way that they spilled into his lungs.  Every time he drank he was damaging his lungs with liquid and bacteria that did not belong there.   He sounded like he was constantly having an asthma attack, night and day I was giving him nebulizer treatments and steroids, just so he could drink, just so he could breath.   I was faced with a choice, to surgically wrap his stomach around his esophagus to prevent him from vomiting, burping or refluxing any more.  To put a tube in his stomach so I could feed him after the surgery and to allow his throat to heal before his laryngeal cleft repair--which later he never needed.   If I didn't do the surgery Henry would continue to live on steroids and breathing treatments, If I did do it I would face what I felt was the worst thing I could do to him, altering his body and having to feed him at home through a tube. 

The Doctors we had were kind, intelligent and I respect them and appreciate the care they gave to my son.  I know they told me what they thought was the best option for us at the time.  There was a piece to the puzzle that was missing at that time, however.  That piece would not be found until almost eighteen months later.   Henry had FPIES, perhaps a more chronic form, which was missed because we were focused on the laryngeal cleft, which he did not have.  This was blamed for his aspiration.  But it was severe REFLUX that was ultimately to blame, severe reflux caused by a chronic form of FPIES, with more delayed and not always dramatic reactions to foods that he could not tolerate.   
I think if someone had really looked at him, had considered his chronic diarrhea, his failure to thrive, his early diagnosis of milk protein intolerance,  they might have consider FPIES.  It saddens me to think that at eight months old, I could have started him on a road to recovery, but we suffered for ten more months before we received the FPIES pieces to the puzzle. 

 Months before I started Henry on the GAPS diet I  had been reading the blogs of other mom's with FPIES kiddos and the "intro diet" they had their kids on, in an attempt to "HEAL" their childrens' guts.    I beleve that the Lord guided me to these particular mom's, and that GAPS was an answer to many prayers for wisdom to help Henry really heal.  Those same mom's came to my aid when I was finally at a place of desperation; supporting me and guiding me on the GAPS introduction diet.  They have shown patience with me as I try to let go of my medical mindset  "fears" and embrace the reality I see:  This diet REALLY WORKS.   I cannot imagine traveling this journey without their support.  We are strangers united by the bond of love for our children and the hope to find a better way, a way to heal them, not just treat the symptoms.
                                   
This is a picture of Henry just eight weeks ago.  He had  a meckles scan at Children's Hospital to try to rule out the reason for his gastric bleeding.    I looked at Henry sleeping and wondered what I was doing wrong.  It had been about ten months since I had put him on an elimination diet.  The elimination diet had COMPLETELY fixed the aspiration.  Henry could finally drink water, and I was amazed.  But part of the puzzle was still missing, he STILL wasn't growing.   At 30 months old, he had lost two pounds in just a few short weeks, and weighed only 23.3 pounds.   At two and half years old he was still wearing size eighteen month clothes that were loose on his thin waist.  I felt a sense of urgency as I watched him refusing to eat the foods he loved, I knew he couldn't afford to loose anymore weight.

Henry started the GAPS introduction diet just seven weeks ago.  If you want more details visit the website at www.gapsdiet.com.   I started making Henry broth from fish, chicken and later added in lamb and beef broth.  At first Henry seemed worse, which is the hardest part about doing the introduction diet with your child.  Even his respiratory symptoms came back, sounds in his throat that had been gone for months and increased mucous and drainage.  As the body is detoxing you will sometimes see these symptoms.  I was nervous and so afraid that Henry would loose more weight, but my GAPS mommy entourage encouraged and helped me through.  Prior to starting GAPS, Henry looked so thin, his face was drawn and his ribs prominent.  My only experience with a high/fat protein diet had been the Atkins diet, which I had tried once for weight loss years ago, of course the opposite of what I intended to accomplish for Henry.   Everything I know as a nurse made me afraid to try the diet, afraid that it was not a healthy option for my child.  Our American culture has brain washed us with the the food pyramid which is rich with carbohydrates and not just vegetables but breads and whole grains.   I have always thought myself healthy because I ate whole grains and read the labels on boxes.  Gaps presented  a whole new way of thinking, getting rid of all processed foods in ones diet, eliminating all grains and focusing on fats and proteins, foods that are easily digested.   I realized that I was not as "healthy" as I thought and that my view of nutrition was just as skewed by our "low fat" brainwashed culture as anyone.   GAPS has been a huge change for our entire family, it was hard at first.   I can see positive changes in all of my children, who although not diagnosed with FPIES, may have had some chronic forms of food intolerance as well, which I may discuss in a future post .

The most visable change is in Henry.   My little Henry, I look at him, and I am just amazed at what GAPS has done for him in such a short amount of time.    His face is full, his eyes are bright, he has gained nearly three pounds and now weights 26 lbs.   He has never weighed this much, nor ever gained weight this quickly! Even when I was forcing calories through the G-tube he would not gain!     He is now fitting into his size 2T clothes that he got for Christmas, and they also fit him length wise, as he has grown in height as well.    He had a real cold a few weeks ago, which he gave to me!  In the past if Henry ever got congested he would be sick for weeks and weeks, he would wheeze and need breathing treatments and it just seemed like it would take forever for him to recover.  He recovered so quickly, and I believe it is because he is actually using the nutrition I'm feeding him, he is the most healthy he has ever been.  He is thriving and he just looks amazing.

This is him a few days ago.  He is eating so much I can hardly keep up.  He loves meat and eggs!  He has been sleeping through the night for an entire week, which is nothing short of a miracle.  His behavior is so different  than before we started GAPS.  He is full of energy, life, and he is happy.  He is not clingy and crying, he is not in pain.  I have seen it first hand, his body is healing.  GAPS is not a fad diet and it is not an easy journey, but it is a road to healing.   I believe that everyone, no matter how seemingly well, or sick, can benefit from it.   I wish we had not been so afraid, and that we had tried it earlier.  It is hard at first, but I can tell you, it is so worth it.

                            Our journey to healing has only just begun.  However, the pieces to our puzzle seem complete, and the end result is beautiful. 

Disappointment, Doubt, Discouragement--how do we cope

(If you don't have time to view the entire post skip down to the end for the summary points)

Many of you  dreamed of your baby taking that first bite of food and smearing it all over his face, not a child who vomited every time he tried a new food or got a rash from head to toe.   Many of you imagined a happy go lucky little one, not a screaming colicky baby who is still so fussy and fragile, who seems to be in pain more often than not.  You face daily disappointments and the overwhelming feeling that it is up to you to figure this out.  You spend your sleepless nights holding that crying baby and trying not to cry yourself.  You can't help but wonder why this happened to you and why God allowed this, couldn't you just have been like everyone else who has a baby that eats and sleeps normally?

You feel so overwhelmed every day, trying to keep it all together on little sleep.   You see the piles of laundry and dishes, you see the carpet needs vacuumed and the bathrooms scrubbed.  You need to go to the grocery store for the fifth time this week, that's the one thing you absolutely have to do, because you can't go to a fast food joint to pick up something "easy," you can't just take a break or have a night off from food allergies or intolerance's.  

At the beginning you told yourself, this would be over soon, the baby would grow out of his colicky state, he would eventually be able to eat, this wouldn't last forever.  Two and half years into it, it's hard to keep saying the same things over and over, how are you going to keep your spirits up in the midst of a "chronic illness?"

I say these things with humility, as nurse, I encounter Mom's all the time, who have children who have been battling cancer, have diabetes, are disabled, or will never grow to be self sufficient without the help of their parents.  I have spoken to countless parents who keep marching on in the face of adversity, who put themselves aside every day, to take care of the child they love.   What keeps them from falling into a deep depression?  How do they wake up every morning and deal with doctors appointments, chemotherapy, and caring for children with chronic illness? 

Love. 

The love of a parent is all encompassing.  It is powerful.  It is blind, it is selfless, it is strong.  This love will fight against all odds, to do whatever it takes to protect his or her child, to help him, to give him or her the best life possible.  I have seen this, I have lived this.

We keep on because we have to, for our children.

However, it is possible to allow the chronic to steal our joy, even our very life away from us.  To consume us, to overwhelm us.  We have to fight this discouragement with the same gusto in which we are fighting for child.   Doesn't our child deserve to have a mother who is full of joy and life, in spite of all that threatens to take that from us?  I have seen the chronic destroy the spirit of the caregiver, I have seen the caregiver become so overspent, that she falls into a place of discouragement, or bitterness or depression.  How do we, the caregiver cope with the demands that fall upon us and at the present, have no for-see-able end in sight?

Let's turn to my favorite source of wisdom and help, The Bible, God's Living Word to us. 
What are the two things that often steal from our joy and threaten to weaken us and bring us down as we care for the chronically ill?  I would say for me it is fear and anxiety. 

"Cast all your anxiety upon Him (Jesus) because he cares for you."  1 Peter 5:7

The apostle Paul,was no stranger to suffering, he himself had been imprisoned, beaten, mocked, and even suffered from his own physical aliment which he refers to has a "thorn in his flesh."  He speaks from his own experience with chronic pain and suffering,  and he tells us:

"Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God which surpasses all comprehension shall guard your hearts and minds in Christ Jesus."  Phil 4:6-7

He goes on to explain how we can allow God's peace into our lives, we have to watch what our minds are dwelling on and make an effort to actually think about the following things:  "whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, let your mind dwell on these things.  The things you have learned and received and heard and seen in me, practice these things; and the God of peace shall be with you.:  Phil 4:8-9

Paul is one of my favorite hero's of the faith, he knows what it's like to endure hardship, yet he keeps his joy, he keeps his faith in spite of it all.  He has this belief which keeps him going

"And my God shall supply all your needs according to His reaches in glory in Christ Jesus."  Phil 4:19

You may be saying to yourself right now, well apparently God does not know my needs because he sure isn't supplying them right now.  I agree that there are times, when it feels like God is neither listening or near to us.  I do not wish to minimize your pain and suffering.  There were times in my journey when I felt that God was distant, when I cried out to him and felt He was silent, it was in times like these that I needed the help of others to keep me going.

As women, we are not good at asking for help.  We are used to doing it on our own.  In our culture we applaud those who put on a happy face and act like they have it all together.  The supermom who does it all!  In so doing, we do ourselves and others a great disservice.  In general, I feel that sometimes Christian women and mom's are even worse at being genuine.  Rather than admitting we are struggling with something, we try to act like we are the "good Christian" who would certainly never have questions or doubts.  What are we afraid of?  Afraid of being seen for who we really are, human?  We are still imperfect, that is why we need God's help, that is why we need each other.  We sometimes need another woman or older woman to come along side us and pray for us, to build us up, to share her wisdom and her journey.  We need to hear the stories of the older generation, we need to seek these women out and ask them to coffee and ask them how they did it.  We need to be real with each other so we can know that we are not alone in our struggles on this earth. 

Paul himself reminds us of the real secret to his incredible attitude, the real reason he kept going and never gave up in the face of constant adversity.  "But whatever things were gain to me, those things I have counted as loss for the sake of Christ, more than than, I count all things to be loss in view of the surpassing value of knowing Christ Jesus as my Lord, for whom I have suffered the loss of all things, and count them as rubbish in order that I may gain Christ, and may be found in Him, not having a righteousness of my own derived from the Law, but that which is through faith in Christ, the righteousness which comes from God on the basis of faith . . . I press on toward the goal for the prize of the upward call of God in Christ Jesus."  Phil 3:7-14

Paul knew, believed more than anything else, that there was more to this life than just the present day struggles.  His primary focus was on God and he says that he counts everything else as garbage that can't even be compared to the future that he has in heaven with Jesus.    He knew that the thorn in his flesh was temporary, though afflicting him in this life, it would have no power over him in the next.   He had his focus on Jesus first, He made an effort to put Jesus and the things of God first in His life, above everything else.

Well, that's all well and good you might say, but I'm not Paul, I'm just a regular person, and I don't have some super faith like that.  Well believe it or not Paul wasn't as different than you as you might imagine.   In fact he is quick to remind us that he was the "least of all saints," Eph 3:8, and that he was not even fit to be called an apostle 1 Cor 15:10 because he persecuted the church prior to his conversion.  If anything, God uses Paul to show us that He can use anyone, that He can change anyone, that if we put our hope in Him anything is possible, that His grace can reach the darkest soul and transform it.

I imagine that some of you may not know Jesus, I invite you to read the Bible, without thinking about what you've heard or imagined Him to be.  But start with the Gospel of John and just read about Jesus and see who He is and His message to you personally. 

As I think of the love that motivates me to keep fighting for my son.  The love and makes me want to be a better mother and a better person; I can't help but think of the sacrifice that God made for you and me.   Think of that love that you have for your child and imagine allowing your child to face suffering and pain, to not intervene on his behalf, to give him up to save someone who didn't even know you or even care for you.  This is the love that God has for you, I hope that you might embrace it and let it tranform you. 

"For God so loved the world, that He gave His only begotten Son, that who so ever believes in Him will not perish, but have eternal life. " John 3:16

Summary on how to overcome disappointment, doubt and discouragement

1.  Give your anxiety to God and believe that He cares for you 1Peter 5:7
2.  Pray and make your requests known to God  Phil 4:6-7
3.  Make and effort to dwell on the right things Phil 4:8-9
4.  Admit your struggles and your humanness
5.  Seek out other women who can help keep you on the right path and encourage your faith
6.  Know that this life and all the hardships that come with it are temporary Phil 3:7-14
7.  Accept Gods love for you, forgiveness and provision for you to have eternal life in Jesus John 3:16

Here we go again!

First of all welcome back to those of you who actually read this blog in spite of my failed efforts to keep it current.  I have to be honest, sometimes when dealing with chronic issues in your child, it is hard to keep ones focus in the right place.  It is easy to become discouraged, or to feel consumed by the problems you encounter on a daily basis.  While I want to be informed and enlightened, I also don't want to be consumed by fear or worry.   It is hard balance as we search and hope for a cure for our child.  Balancing the need we have to fight for our child's well being, and yet the desire we have to submit to God's will for our lives.   Working constantly to help them, and yet at the same time being willing to accept and let go of the things outside of our control.    It is a fine line.

I took sometime away from the Internet and blogging to just be quiet and calm my mind and thoughts.   For about 6 months Henry has been drinking thin liquids without aspirating.  It is nothing short of a miracle in my mind.  I remember when he had his G-tube, I remember when he couldn't eat and the doctors told me they didn't know if or when he would ever eat.  It was a dark place, it seems like a very  faint memory now.   I attribute all of the healing in his body related to eliminating many foods from his diet, shortly after the diagnosis of FPIES or Food Protein Induced Enterocolitis Syndrome.   I saw my son swallow water for the first time 6 months ago, something he had never been able to do with out choking. 

The one thing still not under control has been chronic diarrhea.  Henry seems to have a chronic form of FPIES and delayed reactions to the foods that hurt him, making it hard for me to figure what he is reacting too.  I put together some pieces of the puzzle, but it seemed to me that something was still missing.

A few months ago Henry had an emergency called intussusception.  The doctors don't know what causes the intestines to telescope onto themselves in this way, cutting of the circulation and eventually causing death to the gut.  Thank God we got him in early enough and he did not require a surgery or have any "lasting" affects.  I did notice a change in him ever since that happened.  Along with bloody stools and even after that resolved, Henry just stopped eating.  After a few weeks it was enough for him to eat one or two bites of food a day, and he was hardly drinking.  I began to become extremely concerned.  The doctors didn't know what to do.    I started to research and remember things I had looked into in the past--the other pieces to Henry's puzzle. 

I have always wondered about Henry having a "leaky" gut.  It seems he's had mucousy diarrhea since birth.  We got it under control with the elimination diet until a few months ago when it returned along with new weird rashes.  Henry has been on antibiotics and steroids most of his life.  These drugs are known to disrupt the normal flora in the gut.   This opens a door for opportunistic yeast, candida albacans to flourish and grow.  The rashes Henry has on his face and bottom look the same, I am nurse, I know they look like yeast.  Have you ever had yeast?  It burns, it hurts, it's not fun.  If Henry has this inside his whole GI tract, maybe that's why he wont eat.  I've always had him on a pro-biotic but I recently read an article about how one needs to be on a pro-biotic with several different strains and for a child his age he need about 15 billion units.  The one I've been giving him has about 5 billion.  It's also hard to find a good probiotic for an FPIES kid who is reactive to all kinds of things. 

I started reading more and more and I ordered Dr. Natasha Campbell-McBride's book called "Gut and Psychology Syndrome."  A few weeks ago Henry was pasty white, he had lost a pound and a half and was 23lbs 3 oz at 30 months old.  His little arms and legs were so thin and I could see his ribs.  I was scared, because he would not eat and as you know, I don't have a G-tube any more to force calories in.  I read the book and I'm still reading it over and over.   I started making bone broths and the child who was refusing to eat actually has been drinking these broths filled with fat and nutrients and before my eyes, I am seeing slow progress.  The diarrhea stopped and it seems the pain, that was causing him to refuse to eat, has stopped as well.   Today he ate squash, which he would NEVER touch before this and several plates of chicken.  It was amazing to see.   We are trying something I feared to try, another elimination diet, but this time with the goal of actually cleaning out his gut and rebuilding it so to speak, with good flora and new cells.  Is it possible?   I'm hoping so, come on the journey with us and lets see what happens, we've got nothing to loose.

Two years . . .

I remember it well, my fourth child and my longest labor . . .Henry was born after 13 hours and I laughed when I saw his thick jet black hair.  Whoever said that kids with thick hair give you heart-burn was right, I had the worst heart-burn of my life when I was pregnant and Henry of course he had severe GERD and colic.  I'm not sure what the hair has to do with it, but that old wives tail may have a bit of truth to it!  The neat thing about Henry is that he was the answer to my oldest daughter Hannah's prayer to have her baby brother born on her birthday.  And so today she turns seven and he turns two.
 
I sit in awe today, and waves of nostalgia wash over me.  I've been a mother for 7 years.  How did that go by so quickly.  I remember when I brought my first daughter out in public as a newborn.  I remember a mother I met in the store; "I remember when my children were that little . . . it goes by so fast, cherish it." she said.  Her words stuck with me, the longing in her eyes warned me of a time in the future, when I would actually miss those nights of sleep deprivation, nursing and rocking a newborn.  She was right, it was gone in a blink of an eye.

I sit in wonder and awe that God choose me to be the mother of these precious and beautiful children.  Me, a flawed , impatient and imperfect person.  He gave me these beautiful, spirited, funny children, a gift beyond anything I could have ever imagined in my life.  I am indeed blessed.

The past two years has gone by faster than any previous years.   It was like a world wind of tests, doctors visits,  fears and worries.  It was a pit of darkness and nearly despair, and a wilderness of unknowns and a deep thirst for answers.   At times I was gripped with panic and despiration, the terrible helplessness in not knowing what was wrong with my son, or how to help him.  Some questions are still unanswered.  Why is Henry still aspirating?  Why is he still underweight?

I've had him on an elimination diet for over 6 months.  His stomach issues have improved, it's not quite perfect, but the diarrhea is mostly gone.  He still has to drink liquids very thick, or else he coughs and his chest gets rattly and congested with aspiration.   In case you were wondering, we chose to hold off on the swallow study, and yes the allergy testing too.   Maybe you wonder why.  Well, Henry doesn't have any symptoms of true allergy, he has "intolerance's" to many foods.  He has had blood work in the past, as well as skin testing when he was younger.  When I give him dairy he doesn't swell up or get hives.  He has diarrhea;  he burps and has a lot of reflux sounds in his gut.  So  I opted to not put him through any more testing as of yet and to try to continue on this diet.  Also, he has had at least four swallow studies in the past year.  All of which showed that he was still aspirating.  I wanted to give his body more time to heal from the inflammation that might have been caused by food intolerance or the FPIES that he was recently diagnosed with.  The doctorsfeel if he has not outgrown his pseudo-laryngeal cleft (Cincinnati children's determined that he has something LESS than a type one cleft which is the smallest size cleft) that they would attempt to sew up the grove in his larynx in hopes that this would stop his aspiration of thin liquids.  I guess, I am not quite ready to do the surgery.  I have seen some progress in little Henry, and when given small amounts of water with a cup, in which I can control the sips, he doesn't choke unless he takes it too fast.  The confusing part is Henry's aspiration is silent, so we usually don't see the signs of it right away, until a few days later when he is sounding "gunky" in his throat like he has to clear it, he also starts sneezing a lot and then coughing and much later wheezing.   In other words, I am not convinced that a surgery would fix Henry's aspiration.  If have learned anything about aspiration in the past two years, it is that there are many reasons that a child aspirates, it is not always as clear cut as having a laryngeal cleft.  Sometimes surgery helps, other times, there are more things involved, such as reflux or GERD and in Henry's case also food protein intolerance.  I am not fully convinced that a surgery will "fix" him.

All this to say, that we are sort of in a holding pattern.  I am okay with this.  Last year on Henry and Hannah's Birthday I called 911 because Henry was gagging and going limp.  It was a horrible day.   Looking back on it, I think he was possibly having a delayed reaction to the food he had eaten earlier, but it took me nearly several months to find out that he had FPIES (Food Protein Induced Enterocolitis Syndrome).  It has been a long, rocky road.  I have been  tried  and stretched and today I am a thousand times thankful for today:  the present moment.  Today my son is rosy cheeked and happy, today he is eating and drinking by mouth and not by G-tube like he was last year, today he is making funny faces and running around the house being a normal toddler.  Today he is off ALL of his medications, he is not wheezing, he is not at the hospital.  He is home.  I know that others who read this are not were I am yet, I maybe you are at the beginning of the journey to answers and hope.  Henry is not perfect, there are many foods he cannot eat, he cannot drink liquids without thickner, but I choose to look at all that he can do and all that we have today.  I hope to give you hope for a better tomorrow.  I hope that my today will be yours soon.

FPIES--how did we miss the signs?

Yesterday was Henry's allergy appointment.  I have to be honest I was reluctant to go.  I feel like
"we've been there, done that" when he was just 5 months old--all the skin prick tests came back negative.  I have to admit that when Henry's respiratory issues first surfaced, my first inclination was "could he have allergies?".  I have to admit I had an initial "gut feeling" that was quickly suppressed by doctors who told me that babies don't get allergies.  I pursued  an allergist anyway, all the skin prick testing was negative, but since she had two children of her own with MSPI (milk soy protein intolerance) she suggested that I stop eating milk and soy, since I was breast feeding and since Henry was having lots of mucousy diarrhea.   I did this and many of Henry's symptoms improved initially, until I started adding solids to his diet.  This should have been my first clue into Henry having a significant issue tolerating food proteins.  I guess I  never thought about solid foods playing a roll.   Henry was diagnosed with a type one laryngeal cleft around the same time, in  March of 2010.  After the cleft diagnosis, everything was focused on "airway."  I was so concerned about his aspiration issues that I didn't revisit the idea of food allergies or intolerance's.  Today I went back and read my blog posts on the laryngeal cleft kids website.  I read from day one until now.  I couldn't help but feel a deep sadness, as I everything I read, pointed to the diagnosis of FPIES--it's just I had never heard of it.  No doctor had ever mentioned it.    I guess my doctors weren't familiar enough with it, or we all were so fixated on the Henry's airway issues that we dismissed the possibilities of food intolerance.  All the while, Henry was failing to gain weight, he was anemic--all these things happened after the introduction of solid foods.  Failure to thrive, the increased coughing after eating, the difficulty swallowing, the diarrhea, random hives and rashes--then these weird spells where he would look like he was "passing out" and would become lethargic and unresponsive.  All of it was blamed on the laryngeal cleft and aspiration.  The thing that never added up for me, was that most children with a laryngeal cleft usually improve after the introduction of solids--Henry worsened.  I can't tell you how many times I questioned the doctors about this symptom,  over the past year and a half, but no one had an answer for me--no one.  The solution finally: "JUST DON'T FEED HIM any more."  It makes me sad that I knew in my heart that something more was wrong with Henry, but I pushed the feeling aside after months of Doctor's telling me that  "Henry is just different."  The doctors couldn't figure it what exactly was different,  but they didn't look into it further either.  I can't help blame myself for not questioning his  symptoms or pursuing a solution.  For months I thought Henry was going to need a tracheostomy so that he could breath--I was so afraid and obsessed with his upcoming airway surgery--which never took place; I couldn't see beyond the immediate obstacles.  I was so obsessed with him being able to eat by mouth and getting rid of his G-tube, that I didn't look beyond it and into the real reason behind his persistent reflux, chronic diarrhea and constant inflammation.

There is no sense going backward.  There is no sense obsessing about what I should have done.  I don't blame anyone, I just feel sad that Henry was suffering from inflammation and reflux caused by his intolerance of solid foods.  A friend and I discussed today, that ANY TIME a child presents with GI reflux that does not respond to medication, combined with diarrhea or vomiting, as well as failure to thrive--FOOD INTOLERANCE should be evaluated.   I think with Henry, as soon as the laryngeal cleft was diagnosed, nothing else was pursued, everyone was focused on getting him well enough to have a surgical repair of his airway--yet interestingly enough, his airway was so inflamed, that repair was not possible in May.  It was not until we took all solid foods out of his diet that he finally healed enough for them to reevaluate his airway in Cincinnati, at which time he was found to have an interarytenoid grove and not a true laryngeal cleft.


I share this info, because I have heard countless stories about other kiddos who can get well enough to have the repair of the cleft--what is typically to blame--persistent reflux.  What I kept asking myself--is WHY in the world does a child have reflux that persists beyond 6 months?  The doctors tell us that a certain amount of reflux is normal in infancy due to the natural forces of laying prone most of the time and that it's easier in the laying down position for milk to reflux up the esophagus.  Also the esophageal sphincter is looser and tightens as the child grows.  If most children supposedly outgrow reflux after 6 months, wouldn't persistent reflux warrant further allergy testing--especially if it is coupled with respiratory symptoms as Henry had?  Obviously, we know that with FPIESEosinephilic disorders?  Is it possible that infants born premature are at more risk for developing more gut issues due  both the early introduction of cows milk protein (formula supplementing in early life)  as well as the fact that their GI tracts are more sensitive and underdeveloped to begin with?    These are just questions, I don't know the answers, I think we are about 5-10 years out from doctors understanding the connections between such things.  Originally our ENT who was looking primarily at Henry's airway said that the majority of the children she saw with airway malformations also had reflux and that the two were connected--although that connection was not well understood.  I venture to question if food intolerance in many cases are the cause of severe reflux as my son experienced.

It regret to think that many children diagnosed with severe reflux and asthma could possibly have food allergies that would not show up on the typical skin prick test.  I think that as parents, we can only be proactive in asking doctors and as I did, trialing my own elimination diet and thus proving the connection between Henry's intractable reflux and respiratory issues.  I cannot emphasize enough, that if you have a gut feeling that something is wrong with your child, keep a journal of symptoms and seek a second and third and even forth opinion if necessary.

I am pleased to know that Henry is seeing an allergist at The Children's Hospital in Denver who is very knowledgeable about FPIES and is working with some of the top researchers to stay abreast of current research.  The program is connected with National Jewish as they also specialize in asthma and allergies.  I appreciated the insight our new allergist gave concerning how to proceed with FPIES new food trial.  He said that right now Henry is reacting to everything due to the inflammation in his gut.  This goes along with the leaky gut theory that the idea that the gut is damaged and thus more reactive to any and all foods trialed.   In an article in The Journal of Pediatrics, Dr. Putnam who saw Henry in  Cincinnati Children's states, "Continuing food challenges in the face of repeated failure is emotionally taxing and, if not carefully done, commits the child to perpetual illness during the failed search for something to eat.  It is essential to recognize these cases and suspend food challenges until such time as optimal health is restored" (pg 8, The Journal of Pediatrics, July 2008).

This ideology is exactly what our allergist presented to us.  He suggested that for the next 6 weeks we keep Henry on his safe food list and suspend any further trials until his gut has a chance to heal.  He also suggested that we come in for more skin prick testing prior to starting the solid food trials.  At first I questioned this, but he further explained that it would be prudent to test Henry for any IgE mediated allergies, that is, the allergies that create a histamine response.  IgE mediated allergies produce the typical symptoms we recognize when a child has a reaction to peanuts such as facial swelling, hives, wheezing etc.    Once, we know Henry's underlying IgE allergies, if any,  we would know NOT to trial those foods.  This of course makes sense to me, so we have that appointment scheduled in one month.  Andrew, his older brother, will also be tested as he has similar symptoms to foods and has had notable improvement since I've removed some of the trigger foods I've identified. 


All in all, we are making progress, and finally have a plan.  To be honest, I am glad to stop trialing food, as every day it seemed someone had a rash or diarrhea and with trying to figure out both boys triggers I have my hands full.

Take a vacation from your problems . . .

Do you remember the comedy with Bill Murray and Richard Dreyfus--"What about Bob?"  Remember the advice the psychologist gives:  "take a vacation from your problems."   That's sounds good to me.  I think we all could use a vacation from our problems.  As mom's we spend so much time nurturing others that we forget to nurture ourselves.  Sometimes we even loose sight of who we are because we are so wrapped up in trying to help our children and others that we forget the things that we love, the things that make us who we are.  We start defining ourselves by WHAT we DO rather than WHO we ARE.  When we go down a road of defining ourselves by what we do--it quickly becomes depressing.  Cooking, cleaning, sorting the laundry, loading the washer, loading the drier, folding, changing a diaper, changing another diaper that exploded onto Jr's newly washing clothing and ran down the leg onto the carpet, re-loading the washer with the diarrhea soaked clothes and the vomit covered sheets, washing the stain out of the carpet,  REPEAT.   No wonder we quickly find ourselves depressed and despairing.   Even more tempting is despair in the mother of a child with chronic illness.  She consumes herself with doing all that she can to help this child, researching, praying, comforting, researching, writing letters, calling insurance companies, explaining the symptoms over and over to doctors and well meaning friends, scheduling appointments, going to appointments, fighting back the tears as her child is poked again--she is always surviving for her child, always fighting for his/her rights, all the while pushing back the guilt she feels  that she is somehow not  doing enough for him or her or the other children who have to wait while she helps the sick child who demands all her time.  What would she give to take a vacation from her problems?  What would she do to make it all disappear.   

Oh, sisters, I wish I could be there at that bedside in the hospital with you even now.  I wish I could hold your hand through that procedure that your child is facing, I wish I could wrap my arms around you and in the silence whisper, "I've been there, it's okay."  I wish I could take away your fears and worries and give you the answers that you seek.  I wish I could spare you the pain that you are feeling for your child. 

I wish I could tell you that during those times of darkness, I never wavered in my faith, I never questioned God's love, I never doubted His care for me.  But if that were true, I would have been more than human.  No, rather, it was in the darkest times that I realized I was in fact human, that I was in fact merely a woman, a woman who never felt weaker than I felt then.  It was then that I was so low, that all I could do was look up, and cry out as your little ones cry out to you--"hold me, hold me".  I wish I could say that in a shining moment God parted the sky and said "HE IS HEALED."  And everything was better for Henry.  Instead, through the unexpected, God continues to teach me to wait and trust.   

I still do not have all the answers concerning my Henry.  I don't know why he still has trouble swallowing, or why he has to drink his formula as thick as pudding to prevent it from leaking into his lungs when he swallows.  After 20 months of doing all that I can, I don't know why he is still so severely underweight.  I don't know why he can't tolerate certain foods and why the things that most people can eat wreak havoc in his gut.  I don't know why he is prone towards inflammation or if he will still need his airway surgery.  I don't have the answers and neither do the doctors--yet.

God has chosen to leave some things unanswered.  I was angry at first.  Why would he allow this to happen to me.  Hadn't I been faithful--What did I do to deserve this?  What did Henry do?  The answer dear friends--is NOTHING.  I had to ask these hard questions, and so may you.  Do not fault yourself for being human.  Do not try to be something you are not.  As women we try to be so strong, we try to keep it all together.   Every other woman is wishing you would be real, so that she can know that she is NOT ALONE, that you are human too and so is she.  She is riddled with questions and anguish and pain.  That she is trying to be the best mom possible, but sometimes she makes mistakes--sometimes she forgets to plan dinner or do the laundry or dare I say--feed the dog!  She is human and so are you.

If we define ourselves by what we DO, we will end up despairing when we, by own standards, fail to be what we think we ought to be--SUPERMOM.  Who set this standard?  And what does it even mean?  Are you seriously a better mom because your child went to school with a picture perfect outfit and braided hair?  My child went to school today with a rats nest hairdo and purple flower boots--and he is a boy! 

Truth be told:  when our lives are filled with the stresses of REAL life, such as caring for a sick child, or caring for any child for that matter--we will despair when we focus solely on the problems,  the "diagnosis,"  or lack there of. 

Jesus said "MAN SHALL NOT LIVE ON BREAD ALONE"  Those with food allergies will give a hearty amen!  But what did He mean?   Well, look at the context in Matthew 4, Jesus was being tempted by Satan.  And when did Satan come to Jesus?  When he was at His strongest?  No!  He came to tempt him after Jesus had fasted for forty days and nights; when his body and mind were weak with hunger, when he was at the point of total exhaustion.  When He would have been most prone to depression and despair.   Jesus answered, "MAN SHALL NOT LIVE ON BREAD ALONE, BUT BY EVERY WORD THAT PROCEEDS OUT OF THE MOUTH OF GOD." 

Bread is of this earth, and it gives temporary life, but in the end we are all perishing with out God.  Imagine as with FPIES, when you taste it, it is wonderful and quenches your hunger, but hours later--it causes you to wreath in pain, and then putrefies in your gut causes you nausea and then to vomit.  It never satisfies, it never nourishes, it never fills--instead it ultimately destroys.   That is what I think happens when we feed ourselves with the wisdom of this world rather than the WORDS of God.  Why settle for the bread of the earth, why do we dwell on the  temporary--when  GODS word is available to us?  WORDS OF TRUTH. WORDS OF LIFE.  So many times, instead of turning to God's word, I worry, I research, I freak out--I eat the bread and later feel so sick.  I need His WORD to survive.

This life is in our face every day, and more so all the problems of it.  It is easy to be consumed by them, so often I am.  When I constantly dwell on the negative, it sours like putrid bread in my stomach, and if left unattended long enough it will grow into bitterness.  

One verse in my Bible study spoke to me, should I say screamed out at me this week--Sisters, eat it as the GOOD bread, let it fill you, let it nourish you, let it heal your soul:

"Therefore, we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day.  For momentary, light affliction is producing for us an ETERNAL weight of glory far beyond all comparison, while we look not at the things which are seen, but the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal."  2 Corinthians 4:16-17

Don't lose heart.  Do NOT lose heart.  If I dwell only on what is happening here on earth, I will certainly lose heart, I will certainly despair.  There is more than this life, for you and your child.  This life is not the end.  There is a day coming when He, Jesus,will wipe away all the tears from our eyes.   When there will be no more pain or suffering.  This is temporary, I know it doesn't feel that way now, but what is coming is beyond all that we can imagine.  Also,  Paul says this "momentary" affliction will produce for us an ETERNAL glory, far beyond comparison.   These words come from the apostle Paul, who knew about suffering in more ways than one.  He knew what it was like to be isolated, to be misunderstood, he had faced prison and physical beatings, he knew what it was like to "despair even of life" (2 Cor 1:8) 

In God's time frame, what we are experiencing in this life is only momentary.  It is hard for us to understand, but I think it will be as though we've woken from a dream, when we wake up in heaven and realize how momentary it really was; although while we are here, this life feels like eternity.   We might not have an answer as to the WHY of our child's illness, we may never understand.  But God does tell us that the affliction or suffering we face is producing an eternal glory. What is that glory?  Is it  that others around you see what God is doing and see how He is working and they follow Him due to your response to the affliction?   Is it that as you experience these sufferings that you are changing into a more kind, compassionate person--that you now show empathy to others who have similar problems?    Had you never experienced these challenges, would you be the person you are today, or the person you are becoming?  As our children and husband watch us, will they see in fact that we are human, we do make mistakes, we do struggle, but in the end we set our eyes toward heaven and ask for God's help. 

I know it is easy to despair when your child is sick, especially if it is chronic.  Especially if there are no answers or good solutions.  If that is where you are right now, I have been there too, and it's OK to be in that place.  I want to reach into that place of isolation and emptiness and tell you, you wont have to be there forever.   God can still reach you, even in that pit of darkness. 

I can't take you on a vacation from your problems, I can only point you to the place where I turn from my problems and find hope.   That place is at the Cross, where Jesus was willing to lay His life down and suffer the worst of sufferings for me and for you.   He knows the deepest pains and hurts of our hearts.  And our Father God knows what it is to watch his only son suffer, to watch his son die a painful death.  He allowed Him to bear all our sin, He took our place, so that you and I could have the hope of eternal life, a life that is free from suffering and pain and loss--a life that we must hope for, that we must fix our eyes upon--it's coming . . .

Some practical things you can do to mentally take a vacation from your problems:
(I am not saying it is easy to do these things when you have a child/children who are ill they are just goals to work toward)
1.   Read the Bible--put encouraging verses around your house, on mirrors and random places to help you focus on the positive.
2.  Pray.  On your knees.  In the car.  while you cook, while you clean.  Just talk to God like He's your best friend--soon He will be. 
3.  Try to get out with some friends (I did this last night and it's something I haven't done for months--I laughed so hard, belly laughed--thanks girls--I needed that!)
4.  Go out with your husband--if you can't afford it  or spare a lot of time, be creative--think outside the box.  Have a friend watch your kids and just spend time at home, eating and talking and relaxing without the kids (more on how to focus on your marriage to a post to come)
5.  Do something for someone else who is in need--send a card,  call and ask how they are doing and listen to the answer,  make a meal--when you focus on someone else it gets your eyes off of your own issues for a while. 
6.  Purposefully give hugs to your children and husband--hugs make everyone feel good
7.  The next time one of your kids says "play with me," try not to say "in a minute" just surprise them by doing it--now.
8. Turn off the TV and Internet and get down on the floor and play with your kids.  Pretend to be a lion or something silly, loose yourself in their world of pretend and be someone else for a few minutes.
9.  Exercise--if you can't get out then turn on the music and see how long you can dance with your kids, they will love it and you will start laughing--laughing burns calories too!
10.   Go to bed.  Let yourself rest so you can do this again tomorrow.





  

Is Corn the culprit?

Welcome to the world of mystery--attempting to discover what foods your child might have an intolerance to.  Welcome to expecting the unexpected--take two.  Back in August we discovered that little Henry did not have an actual cleft.   This was good news to us, since it seemed for the time being that he would not need a surgery to repair his airway.  Most recently, through my own research and daily documentation of what Henry eats and every little reaction from red lips to red bottom, I have made some interesting discoveries.  I do believe that Henry has an intolerance to foods.  I am not completely sure as to what extent.  For instance last night I gave him some, may I add delicious, gluten free sugar cookies.  As a side note, let me add that this brand, which I newly discovered is called 1-2-3 Gluten Free, and it was wonderful!  Not only is it gluten free but also soy, dairy, corn and nut free--a wonderful find for mommies of kiddo's with multiple allergies and food intolerance.   The cookies in and of themselves tasted awesome, and they were soft and chewy.   The problem--I made my own frosting with powdered sugar and a milk free and butter free alternative.  Earth balance makes a great soy and milk free spread (make sure you look for the SOY free) and it's a great way to add some calories for your kiddos who need to grow!  However, there is some corn in it for flavoring.  Then of course powdered sugar is pretty much all corn starch.  I whipped it up and wallah--it was a perfectly delicious reaction to corn which I believe occurred about 2-3 hours after consuming loads of frosting goodness.  I was so excited that Henry liked the cookies and ate about 3 of them (which is a lot of food for my little guy) that I didn't expect for him to have a reaction.  I was pretty darn proud of myself for making a gluten free, milk free, soy free cookie.  I didn't think about the lurking possibility of corn.  I must admit that this is why the elimination diet is so hard.  I am still in the process of discovery and I am not really sure how much or how little of a food will set him off.  Even more confusing, is if I can see something on the outside--such as a rash and hives, what could be going on inside that I cannot see?

Within two-and-a-half hours Henry had a rash on his lips and cheeks.  He also was really fussy and wanted to be held and kept drawing up his legs to his tummy and saying "ouch, ouch."  So sad.  Then he had a yucky poop and a red bottom and a little blood when I wiped him.  Really sad. 

The question is, if Henry has an issue with corn--is there a threshold?  I mean, can he tolerate a little but not a lot at a time?  Can he tolerate a small amount in a food, but not 3 cookies loaded with corn starch frosting?  I know from what I have read about FPIES so far would say "NO" I need to eliminate the food completely.  For those of you who read labels, corn is in everything so I have a challenging time a head of me, and I think many long hours of cooking and creating things my sweet boy can eat.  I am learning as I go about the challenges of having food intolerances, and I am just beginning to delve into these waters. 

I will be compiling a list of resources that I hope will be useful for those of you starting this journey or who know someone who has allergies or intolerances to foods.  Looking into the future we'll be keeping our cookies frosting free until I figure out a way to make it without corn starch. 

FPIES diagnosis--what in the world is that?

Well, after a long hiatus, I am back to blogging, and a bit overwhelmed about where to begin.  Basically, after we returned from our Cincinnati trip, Henry seemed to being doing great.  I kept him on my homemade formula and we were not longer using the G-tube.  We also started introducing him to all sorts of foods.  I started out slowly since all Henry had ever really had was thickened liquids.  He loved being able to eat by mouth and welcomed new foods.  This was a real blessing because many children fed by a G-tube and with reflux issues can develop aversions to certain foods and eating can become really stressful.  For a over a month it seemed that all of Henry's problems were gone, that he had been miraculously healed.  Not to down play that, because I do feel that God has done quite a bit of healing in Henry's little life.  All of his inflammation was gone when he was scoped in Cincinnati.  His lungs were clear and he sounded great.  I know that God allowed this, and gave me hope that Henry could in fact be healthy. 


I have to admit that I was so focused on getting Henry to fatten up, that I didn't really withhold any foods from him.  In fact, the nutritionists encouraged me to put butter on everything, to even put cream or half in half in his drinks.  And I did.  I snuck in fats every where I could.  And I gave him milk products with abandon--I mean that's where all the fat is right?  Half n' half, sour cream, butter, cream cheese, cheese sticks, ice cream.  And Henry seemed to love it all.  I didn't really pay much attention to the loose stools and diarrhea, I didn't really think much of it when he vomited and kept retching a few minutes after putting half in half in his drink.  I guess I thought, maybe it was the fat content making his tummy a little off.    Plus he'd had diarrhea and weird yeasty smelling and sometime mucousy stools most of his life.   But then he started waking up more and more at night and I could hear him coughing again and since he has the Nissan, he can't throw up as easily as other kids, but I think he would have if he could.  It seemed like maybe he was having reflux again?  But I wasn't sure why and I just kept desperately trying to fatten him up.   I feel stupid now that it took me so long to put two and two together.   


I think sometimes when you have so many issues with your child you get a little tunnel vision.  Once we were back from Cincinnati and I knew Henry's lungs were okay I think I just went full force ahead to try to help him gain weight.  Slowly he started to go down the same path that we had experienced when he was first diagnosed as an infant with reflux and aspiration.  The coughing at night, then tons of mucous in his nose and throat, and then the noisy breathing, and then the coughing and choking when eating, and then the rattly chest and then the wheezing and needing Neb's. 


How did this happen?  What in the world is going on?  I had questioned how quickly Henry seemed to recover after we stopped feeding him by mouth and I had him just on the G-tube feeds.  These feeds were with a hypoallergenic formula, I guess I didn't take into account that maybe that was part of what helped him get well.  I thought all his issues were related to the laryngeal cleft and aspiration and reflux, I forgot that when he was just 5 months old the allergist had suggested he might be sensitive to milk proteins and soy.  I guess I assumed he would just outgrow it.  But the longer time went on, the worse Henry was sounding and I knew in my heart that there was something more going on with him.


I saw the pediatrician who listened to him and thought his throat did sound inflamed as it had been before and his chest was rattly in the office as well.   "There's something else,"  I said, something they missed.  "The only thing that has changed in the past few months, is now Henry is eating every food, wheat, dairy, soy--there must be something he can't tolerate."  She set up an appointment with the aerodigestive clinic at Children's Hospital and then suggested that maybe I try eliminating foods in the mean time.  I decided to try to eliminate the big 6.  Wheat/gluten, dairy, soy, eggs, nuts, fish and see what happened. 


In the mean time I considered some family history that seems interesting to me and I'm not sure if it's related or not.  My older son seems to vomit randomly and then goes on with his day as if nothing ever happened.  This happens maybe a few times a month, maybe less.  He will look very pale and almost as if he is going to pass out, his legs will be weak and he is very shaking.  Most recently he also starting having a rash on his face that comes and goes and seems to worsen after he eats, but I cannot figure out the trigger. 


I remembered also that Henry had several episodes in the past in which a few hours after eating he would retch and then go limp, it was so scary, I thought that he was going to die because he would literally collapse in my arms lifeless and then he would be very sleepy and hard to wake up.  The last time he did this was in May when I had to call 911 on his birthday.   The ER sent us home and with no answers and told us to just come back if it happened again. 


We had our aerodigestive appointment yesterday and several things happened that I didn't expect.  The GI doctor told me about FPIES.  He said it is an intolerance to certain proteins in food:  turkey, chicken, rice, oats, squash, beans, peas--to name a few.  Henry's weight is not good and the doctors said that the only way to figure out Henry's triggers would be to do an elimination diet.  Try as I could, I realized that with Henry's diet being so limited it would be best to put him on Neocate in order to boost his calories while trying to figure out what foods he might be sensitive too.    The GI doctor mentioned that Henry's bottom was red, I told him that this was normal and that many times after Henry eats and has a stool his bottom is instantly bright red and painful.  He said this is also proof that he has intolerance to foods.


On the ENT front, the surgeon told me that he wants a repeat swallow study in March to see if Henry is still aspirating in spite of the dietary measures we are taking.  He said that while Henry does not have a cleft, he has a deep notch, and that if he does not out grow the aspiration, it would be worth repairing in the future.


So right now I am just absorbing all this new information.  I am searching the web for new recipes and ideas on how to feed a boy who might not be able to tolerate many foods.  I am also holding on the the hope, that God knows all the answers, even if I do not.   To be continued . . .