Thursday, January 5, 2012

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   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. 

Sunday, January 1, 2012

You thought your day was bad--a little GAPS humor

Have you ever had a day were it seemed like everything went wrong?   It began last night when the dog started crying the moment I laid down, in an "attempt" to get some sleep.   He never does that.   Unless, of course he has an evil plan to purposefully eat something completely indigestible; in hopes to have diarrhea for the next week until he finally passes whatever toy, marker or plastic wrapping he ate just for the fun of it. 

My husband ran down and let him out.   I laid in bed and braced myself for a night that I was NOT looking forward too.    I already had a virus  and now this with the dog!   Yes, a good old fashioned virus.  A horrific attack on my immune system, affecting my nasal passages, until they became so inflamed and full of copious drainage,  refilling every time I used my Nettie pot or blew my nose or now even tried to close my eyes.    Most of you probably don't sleep well anyway, you understand then that I expect to be woken up several times in the night anyway, I'm used to that, it's just the way it is with a kiddo who has food intolerance's.  For some reason, they just don't sleep through the night.   I'm used to sleep deprivation, it's just adding to that, the dog waking me up having to go to the bathroom every 3 hours, plus  a virus and some sort of version of adult like croup in which I woke up gasping for air, is more than I can handle.   It's at this time that one starts to wonder why in the world they even went to bed in the first place.  Maybe it would be better to just sit up all night and watch reruns of I LOVE LUCY, rather than attempting to get sleep that you knew you would never get.    I pondered this as I stood at the door, half awake, the freezing cold air blowing in my face, which actually opened my airway allowing me to breath again,  Well I guess at least getting up with the dog helped me breath better.   Maybe sleep is just totally overrated, apparently my body doesn't need as much as I originally thought it did to function.  Or maybe I am walking around zombie-like and everyone around me is wondering if I realize how poorly I am actually functioning. 

The honest truth is, I don't have TIME to be sick.   I don't have time to wake up gasping for air in the middle of the night.  Doesn't my body know that  I have to make broth and wash my vegetables and do the laundry and make my yogurt in the oven; which did not actually turn out as yogurt  for that matter!  No one one really wants to eat it cause it is too sour even with the honey added too it and no one is really sure what it is anyway, watery yogurt with with chunks in it, or  runny cottage cheese?   The consistancy is slightly off.   I have to sieve my broth and wash all the contraptions I just took out to  make my grain free pancakes out of one dozen eggs.   Then, I need to put ANOTHER chicken in the crock pot before I leave the house so I will have broth and dinner ready for tonight.  What?  YES, we are having chicken AGAIN for dinner so don't even start to complain about that okay.  

On top of everything the dog is now so matted, cause I didn't have time to brush him like I want too for the past few months while I was trying to read and learn how to make yogurt and grain free bread and bone broth out of fish heads.   So now that he has had diarrhea all night long, it is sticking to his derriere;  so before I leave to go buy more yogurt, organic eggs and apples, and before I put my second broth on, I first have to give a 60lb dog a bath in my bath tub and then try to cut these mat's out of his rear end.   So, all that being said, I might be a little late to my next appointment after I get the fur swept up and the towels from the dog's bath in the drier and you know what, yes we are having sour yogurt for a snack so just stop complaining okay! 

And just as everything seems to be getting better, the Broncos lost the game, and then my son with hypoglycemia had a melt down and is screaming like a maniac on the floor and that is exactly what I want to do right now but first I need to go change my under ware because I coughed so hard that I peed my pants!  So finally tonight, after two hours of kids coming down every five minutes for a drink of water or another kiss or a snack they fell asleep and I sat down to write my blog which had nothing to do with what I am writing now.   After two hours of working on it, I hit some random button and in one instant, everything I had written disappeared into oblivion.  Mostly likely it was better then this post but now its gone and I just don't have the patience to write it again tonight.    So yeah, it was sort of a rough day.  I hope yours was better cause my dog who used to look like this

Now looks like this

It is a terrible hair cut, and it took me twenty five minutes to get this picture because I think he is embarressed of all the bald spots in his coat.    Well, thankfully hair grows back.  Yogurt, however, does not become more sweet.