Her Story

Ellie was born in 2009. We were sent home from the hospital with the instructions that she is 'just one of those babies that refluxes' and to 'be sure and lay her on her side' so that she does not 'choke or aspirate on her own vomit'. Once home we found she slept an excessive amount, and breastfeeding was difficult. She continued to throw up and it worsened. More than half of her feedings were projectile vomited, her sleep was irregular, and her crying was inconsolable. We were told she was colicky, it was personality, and my oversupply of breast milk was causing her difficulty. We were in the doctor’s office constantly. 


At 10 weeks old I was horrified to find Ellie begin to fill her diapers with blood. It looked as if someone had dumped a melted red Popsicle into her diaper. 


The pediatrician began investigating. Meckles? Breastfeeding? Condition where the bowels kink and then straighten on their own? We were given a referral to the pediatric gastroenterologist, and at 11 weeks she received the first diagnosis of Milk/Soy Protein Intolerance (MSPI). Her symptoms progressed to include extreme lethargy. An elimination diet removing dairy, soy, eggs, and nuts was not enough, and I was then told she could not even digest the protein present in breast milk. She was weaned immediately and placed on a casein-free commercial formula, with the threat of hospitalization due to anemia.


There was initial change with weaning. She was moving, smiling, more active, and there was no visible blood in her stool. The projectile curdled vomiting and diarrhea continued. Her eyes were dark and sunken, and her body was puffy, but her crying was less. We were told what was left was personality, and so for 6 months she continued this way.


At 8 months old we were told to start solids because it would weigh things down and thicken things. We introduced all traditional first foods, beginning with rice cereal, and the pattern for each was the same. Ellie would eat the first bite, refuse the second, and then begin vomiting. Her stool began to burn her skin, and she often ran a low fever. At this point the GI conducted a long list of blood and stool tests, and gave instructions to feed her only formula. At 9 months old she was given the diagnosis of Food Protein Induced Entercolitis Syndrome (FPIES), and we were told there was no research, no answers, and no cure. We were instructed to continue the formula, and start trailing foods that had the least amount of protein such as apricots and plums. With time she was to ‘outgrow’ it, depending on how bad her particular case was.

Ellie’s symptoms continued and her list of symptoms increased. She refused a spoon, showed food aversion, and had a distended belly. Vomiting was random, her stool became extremely constipated, and her upper respiratory symptoms increased. Her breathing was often labored and wheezy. And the crying continued. Traditional allergy testing showed nothing, but X-rays showed colitis.


On the morning of her first birthday she received her first rectal scope and biopsy. There was concern for sugar intolerance and for her esophagus. We were told there was no need to try a probiotic, or examine candida. Instead she was prescribed an elemental (amino acid) based formula, and we had to try three before finding one she did not vomit profusely. She grew, but her symptoms worsened. She did not tolerate diaper creams, diapers, crayons, bath soap, or stickers on her skin. All induced vomiting, diarrhea, and shock like symptoms that were frightening. She began eating non-food items, and her eczema became full body. She was prescribed inhalers for coughing but the cause was unknown.


By 16 months old she had 5 fruits that she appeared to tolerate. We now began to see her have hives, swollen eyes, and manic behavior. The allergist conducted patch testing (APT) which made her extremely ill. The result was a scar on her back where corn had been tested. We were told to immediately wean her from the elemental formula which had a corn base, and to feed her homemade almond milk because there was no formula in existence without corn. Move quickly getting other foods into her diet, and know that she was in good enough condition to go a month without worrying that she was not getting her daily recommended nutrition. She had never been failure to thrive.


It was unrealistic to think that at 18 months she would suddenly be able to tolerate food. And none of the specialists had an answer. We stopped the formula and began giving her almond milk as instructed, and she stopped eating. Every 3rd bottle she vomited uncontrollably and she battled dehydration. She lost 22 ounces, and we were watching her starve to death. This was the turning point. I suddenly remembered a doctor and a book that was loaned to me when she was born, and I searched the internet. Multiple intolerances, leaky gut, lack of bile, Illeal Lymphoid Nodular Hyperplasia, Non-Specific Colitis and it was all falling into place. All FPIES, and also all GAPS. Ellie needed food NOW, but the fear was crippling. I had been warned to stay away from high protein foods because she would most certainly react, but the GAPs diet started with meat broth. So not knowing what else to do I sent an email to Dr. Campbell-McBride in hopes of finding help where there was none.


What I received from Dr. Campbell-McBride’s email was hope, and the confirmation to start the introduction stage with Ellie. I put her back on the elemental formula, and began rotating through as many broths as I could find for corn and soy free meat. Ellie’s healing began, and within one month she was completely formula free, completely GAPS, and completely on the path to healing. No cough, no sunk eyes, no unexplained vomiting. Instead, she wakes up laughing. She has words. In fact, the first time we took her off of the formula she said 6 new words within 24 hours. She DANCES. She holds a beat, bobs up and down, twirls in circles, and sings all day long. 

We don’t know how long it will take Ellie to find healing, or move through the stages of GAPS, but that is ok; because now she eats Real Food, and now she has hope.

update:  Ellie is now 3!  She is thriving, growing and doing fantastic.  Her foods are still limited but all her nutritional needs are met. 

13 comments:

  1. Wow Nichole!!! This is so inspiring!!

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    1. Thanks Cynthia. Ellie will grow up to have one amazing story. Through all of this I never even put together that she was also having seizures, but know now how that directed whose office we landed in, etc. God is good!

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  2. I can't imagine how scary it would be to watch your child starve not knowing how to help her! But reading her story, it is evident that God was able to guide your situation...and He has ultimately brought hope into your situation! Keep up the good work! It is wonderful to read your story!

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    1. Hi Julie! oh yes...He SO did. He orchestrated all of it, and led us right to the information we needed. Isn't He so good? Thanks for your encouragement :)

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  3. Hi Nicole! My name is Deanna. My friend sent me a link to your blog. I am dealing with similar problems with my daughter. Since my daughter was born she had breathing problems. She would start gasping for air when she slept. Even at the hospital, when she was born, they told me nothing was wrong with her. I was told by her pediatrician that she had acid reflux. She wasnt a throw up baby. But she cried, A LOT! She also slept a lot! To the point where my doctor told me to wake her up every 4 hrs to feed her cuz she wasnt gaining enough weight. Then at 3 months old she became constipated really bad. She would only poop once a week. Her pediatrician said it was normal. Her poo continued like this til she was 13 months old. Then a new pediatrician gave her merialax (however you spell it). I gave her that every morning. Oh and her throw up started when she was 12 months old. I had to give her miralax everyday til she was 16 months old. I would occasionally not give it to her to see if she would poo on her own. She still continued to vomit. It wasnt everyday. Some weeks it was. Then sometimes she would go a whole week with no vomitting. So I couldnt figure out why. I changed pediatricians again and she also said it was acid reflux. Her throw up was all curdled looking. I changed pediatricians again. This pediatrician said that she would just be sensitive to milk and to start with 1% then work up to vitamin D. I told her that she should get allergy tested and have her milk changed to lactose free milk. she agreed to the milk change but not the allergy test. I did the test anyway. All negative. She started doing really good with the milk change and I took ALL dairy out of her diet too. Then the vomit started all over again. She went almost a month with NO vomitting. After her first vomitting episode I decided to do a food journal AND wrote down every time she vommited. I noticed that she threw up in the car or within 10 of getting out of the car. Not at home.Not first thing in the morning, like it used to be. So, her pediatrician said to give her benadryl whenever we drove more than 20-30 mins. So I tried to not drive far. She was doing great! Then just this week she started throwing up in the morning like she used to before we started her on lactose free milk. This morning, she was in our bed and was sitting talking with us and giving us hugs, then she just threw up. She threw up every morning for the past 4 days now. She hasnt pooed since 2 days ago. I am SO confused!! Ive been to 5 pediatricians and 2 specialists. Nobody can tell me why she is throwing up. I feel like ive tried everything. Her weight started to drop about 6 months old. Since then her weight and height have been in the 30% or less percentile. I am VERY concerned. I mean I know all kids are different. But I just dont understand why she keeps vomitting. I worry about her teeth too. There seems to be no pattern to her vomitting except she goes about 3 weeks with no vomit (not including car sick vomitting) then starts vomiting at home all over again. Mostly its in the morning. Ive been told she has acid reflux since she was born, car sick since a month ago and lacose intollerant since 2 months ago. Ive changed her car seat since she was 12 months old to forward facing and in the middle to now by the window. i dont know what to do anymore. Can you give me advice or point me to someone who can??

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  4. Also, she has been doing ok with eating food since she was 8 months old. Then about 14 months old she became SUPER picky. I cant tell if it has to do with her problems or just a typical age thing. Right now her eating habits SUCK! She eats only a little at each meal. And she doesnt snack very much threw the day. :/

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    1. HI Deanna! Thank you so much for your note! Im so sorry to hear of your journey you have been on to find healing for your daughter. These things hurt a mama's heart so terribly! Are you familiar with GAPS? Its a medical healing diet designed to heal our babies from the inside out. It is what we are using to heal my daughter. She has gone from no safe foods to quite a list, and we are progressing rather quickly now! You can find out about it here: gaps.me. Here is a link to the blog of a mama who is also a nurse and healed her son using it: http://imexpectingtheunexpected.blogspot.com/ And I would really encourage you to find other parents dealing with the exact same struggles at GAPSandKids.com. Its a safe community to just check things out and find support. The website has a link to the community which is currently operating as a facebook group. Are you on facebook? You can also send me an email anytime at Nichole@GAPSandKids.com Hang in there mama. There IS HOPE!

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  5. Thank you for this blog. We are going through a similar situation with my 11 month old and I am wAnting to get him off Elecare formula ASAP because of the corn sensitivity and I have learned about some of the things to do but haven't known exactly how to go about integrating in GAPS with an infant - so I am very excited to be able to read your blog and see what you have done. Thank you so much for sharing!!!!

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    1. The GAPS book is a great place to start. My blog is filled with lots of mess ups! :) Also if you are on facebook, we have an awesome support group for exactly this. It is linked through GAPSandkids.com. Blessings!

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  6. خدمات متميزة تجعلنا نتفوق علي غيرنا من المتخصصين في هذا المجال فتعاملك مع شركة كشف تسربات المياه بالرياضستحل لك كل مشاكل التسريب التي عانيتوا نها في السابق باساليب مجهزة وحديث تجبركم علي التعامل مع شركتنا المتخصصة لديك الحيرة اياض في كيفة التخلص من مشاكل الصلارف الصحي ولكن مع شركة تسليك مجاري بالرياضستقدم لكم خدمة متميزة تجعلكم تتخلصوا من الروائح الكريهة واليكم الخدمة الاشهر التي تقدمها شركة ركن البيت وهي شركة كشف تسربات المياه بالدمامللتخلص المياه التي تتطرا علي الجدران باسهل الطرق

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  7. للحصول علي خدمة نظافة جيدة تاكد انك تتعامل مع شركة تنظيف بالرياض لديها باع طويل في مجال النظافة العامة فتعاملك مع شركة متميزة فانك ستحصل علي اد اء متميزة فشركات النظافة عديدة فمثلا عندما تبحث عن شركة تنظيف فلل بالرياض ستلاقيي شركة ركن البيت التي تمتلك امكانيات جيدة في اداء الخدمات المنزلية الجيدة بادوات حديثة ومواد مستوردة تقوم باستعمالها فمعك ايضا شركة تنظيف خزانات بالرياض اتي تقوم باداء جيدة لتسليمك خزان تمتلك به مياه نظيفة خالية من الرواسب والبكتريا كما سنمدك باعمال شركة تنظيف مسابح بالرياض التي تعطيك كل الامكانيات في امتلاك مسبح نظيف يحافظ علي اسرتك واطفالك بدون وجود اي اوساخ به ونقدم لكم الخدمة الخاصة بالمنازل والبيوت الصغيرة من خلال البحث عن شركة تنظيف منازل بالرياض التي تستطيع ان تحل لك كل مشاكل التنظيف المنزلي المتعبة التي تعاني منها واليكم خدمة القضاء علي الحشرات بواسطة مبيدات عالية الجودة تقوم بالقضاء علي جميع الحشرات الصغيرة والكبيرة بواسطة شركة رش مبيدات بالرياض التي تقضي علي جميع الحشرات

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  8. لا داعى للقلق وانت تتعامل مع شركة اركان المملكه للتنظيف والمكافحه والتسليك
    وغير ذالك من كافه انواع التنظيف فى المملكه السعوديه باكملها اذا
    كل ما عليكم هو زياره صفحتنا للتطلع على اقل الاسعار المتاحه
    والتى تفى احتياجاتكم الخاصه
    شركة كشف تسربات المياه بالدمام
    تسليك مجارى بالدمام
    شركة تنظيف بالدمام
    شركة تنظيف شقق بالدمام
    شركة مكافحة حشرات بالدمام

    شركة كشف تسربات المياه بابها
    شركة تسليك مجارى بابها
    شركة مكافحة حشرات بابها
    شركة تنظيف بابها
    شركة تنظيف فلل بابها
    شركة تنظيف منازل بابها

    اتصلوا بنا دائما تجدونا فى كل وقت وكل مكان
    لاننا نتعامل بمنتهى الدقه والفعاله والاهميه الكبيره مع شركة
    اركان المملكه لاداعى للقلق نحن معك دائما

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  9. شركة صيانة سامسونج تقدم خصم 60% على صيانة جميع اجهزة سامسونج المنزلية اللى هي ثلاجة بوتاجاز غسالة ميكرويف مكنسة كما تقدم الشركة قطع غيار اصليى كوريا المنشاة ويتم عمل الصيانة بمنزل العميل اتصل على 19058 يصلك مندوبنا فى اسرع وقت ممكن مستنى ايه يلا اتصل بينا عشان نروح مارينا


    صيانة سامسونج
    صيانة غسالات سامسونج
    توكيل سامسونج
    رقم صيانة سامسونج
    صيانة سامسونج
    صيانة ثلاجات سامسونج
    توكيل سامسونج

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