When my daughter was a baby she had failure to thrive. It was one of the scariest, most awful things I have ever been through. She was born on the bigger side—7 pounds, 14 ounces. And for the first few weeks she was fine. She was growing normally. And then slowly she started to fall off the growth chart. 50th percentile. 30th percentile. 15th percentile. 3rd percentile. Until she fell off the bottom of the chart.
Every feeding session was a nightmare. Every pediatrician appointment filled with dread. As a mom my ONE JOB was to feed my child and keep her healthy, and I was failing miserably.
I'll always remember the pediatrician at her one-week appointment saying, “Such a healthy baby! There's no issue here!” Those words haunted me in the years that followed.
At a year my daughter only weighed 14 pounds. She was skinny as a rail. I hated moms with babies with chubby thighs and huge cheeks. Why couldn't my baby be thriving like that? WHAT. WAS. WRONG??????
We tried everything. She was tested for everything. Cystic Fibrosis. Holes in her heart. Various gastro illnesses. But nothing came back positive and nothing changed. She continued to slide off the chart. By 12 months she was so far off the growth chart her little dot would have been placed inches off the bottom of the piece of paper.
I was desperate.
And then one day when my daughter was almost 2-years-old (yes, this had been going on for YEARS!) a casual acquaintance mentioned an amazing pediatrician named Dr. Song. I called to get an appointment. Maybe this woman would be the answer to my prayers for my tiny baby. But no dice. She was booked solid. She wasn't taking new patients. But I wouldn't be deterred. Something in me told me this woman had to see my baby.
I called again. And again. And again. I called so many times begging for them to see my child that they finally caved. Yes, I can be that annoying.
We set the appointment.
On the big day I walked into her office, sat down with my tiny baby in my lap and told her the saga. Born normal. Not growing. Won't eat. Tested for everything. She calmly listened and then suggested I cut out dairy and gluten. “Huh,” I thought. “I don't know how that's going to help, but OK.”
A month after cutting out dairy and gluten my daughter had gained 2 pounds and grown 2 inches. Turns out she had some intolerance (to dairy in particular) that was constipating her and causing her stomach pain, so she refused to eat. And because she wasn't eating, she wasn't growing.
After her first successful weigh-in, I cried. Tears of relief. Tears of gratitude. I brought Dr. Song flowers and tried to communicate how grateful I was. After years of doctors and tests and worry it was all finally OK. My baby was going to be OK.
I recently had dinner with Dr. Song (yes, we've become friends because she's awesome) and she spoke about how she'd like to help more and more children, but she's only one person with a limited amount of time to see patients. So she recently started a website called Healthy Kids Happy Kids and just launched an amazing summit called the Thriving Child Summit where you can hear from her and other amazing experts on how to get your child to thrive. And for me, a thriving child is everything. So check it out. It's free. It's awesome. And you might just get information that changes your child's health.
Deva, I’m glad Dr. Song resolved your daughter’s issue. My dad, a retired pediatrician, just told me a similar story about a baby girl who would scream after every bottle. The baby’s father had been my dad’s patient many years ago and my dad remembered that the guy was allergic to milk. (Unfortunately, I don’t have my dad’s incredible memory!) They took the baby off dairy and she gained weight. I’ll definitely pass along the link to the summit.
WOW! Your dad sounds like an amazing doctor! How lucky for that family that he was there.
I thought most doctors would check for that- especially dairy early on!
How horrible it went on that long but how wonderful to finally have it figured out.
I was that baby, failure to thrive in the early 80’s. My mom had surgery a couple weeks after I was born and her milk lost any nutritional value so I turned into a stick with a big head 🙂 Until the doctor said to get me on soy formula
I know, right? Nope they told me to feed her MILKSHAKES!
I would think so too. I mean it’s the first go-to thing most doctors do. If there’s a gas or stomach pain issue, they switch formula or limit things in a breastfeeding mom’s diet. Even my sister who was born in the early 80’s had a milk allergy issue and was put on soy first and then the early version of Similac alimentum. Her son had milk allergies. My brother had milk allergies. My son had milk sensitivities, so when i supplemented, he was also on Alimentum. I think Deva’s first pediatrician was just a dud. Maybe we just got really lucky.
My newborn daughter was diagnosed with colic, turned out she had bee bipolar from birth. Hang in there Moms and don’t give up.
Yes don’t give up! The answers are out there!
wow! you went thru alot! you’re very dedicated Mom!
It was hard. But I would have done anything for her. 🙂
All of my kiddos had failure to thrive. I know exactly what you went through, going to the doctors office 2-3 a week for months then weekly for months. The lactation clinic was dreadful, some of the ladies just made you feel like you were failing as a parent. I finally got into a feeding clinic with my twins and found out they had reflux…they gained some weight after that. I remember the day when we finally made it back onto the charts, so relieved and happy. My son is now 7 and doing great and the girls are now 5 and they are doing pretty good- still on the small side, but hey we are on the charts and have a steady growth! Thank you for sharing your story and your information, maybe it will help some other mama’s figure things out quicker and have a more stress free life.
I’m sorry you went through it too. It’s so hard. Glad everyone is doing well now! Including mama 🙂
I love our current pediatrician but really it’s because we haven’t had any big issues since I figured out my first babies issues ON MY OWN. It was awful. Not as awful as yours since my little girl was growing but she would Not sleep. At all. Ever. You had to constantly hold her and she would fall asleep for maybe 15 minutes and wake up screaming and arching her back in pain then collapse back into sleep only to do it OVER and OVER again all night long. I could have been an extra on the walking dead without needing makeup or choreographing I was so tired and exhausted I just looked like a zombie shambling around. After 2-3 months of seeing our first pediatrician over and over and him just saying “Oh she’s colicky” “She’ll grow out of it” “Did you read that book I told you?” “Are you swaddling her?” I wanted to punch the guy. We had tried everything he recommended and nothing helped and you could just tell she was in pain. Finally I came across a section in a book about nursing (Lily did have nursing issues) that said if the baby is having issues nursing (she had gotten to where she would pull away screaming even though she was hungry) and are crying a lot to try an elimination diet. At that point I would try anything so I went off almost everything including gluten, milk and spices and after a week she was suddenly a new baby. I slowly added things back and gluten she could tolerate but milk was an absolute no no. I had to check labels on everything I ate. The tiniest amount of dairy product would have her back to screaming for a week. The pediatrician didn’t believe me “Oh well you can do that if it makes you feel better but really she’s just colicky”. I stopped going to him then and there and started seeing someone else. She also didn’t believe that Lily was milk intolerant because there wasn’t blood in her stool (sorry TMI) but the third pediatrician we went to and the one we currently have had the same thing happen to her daughter so totally understood although she was also confused as to why there was no blood. Well around 10 months lily accidentilly had dairy and at THAT point she did have blood….apparently before it all just went through her too fast or something and she just had wicked cramps and gas instead of constipation. I wish more pediatricians were like the one you found and would immediately look to food problems and other possibilities instead of blaming it on “Colic” or whatever. It doesn’t help the baby or the poor parents who feel like it must be all their fault.
I know how you felt. My daughter was the same. Not sure what was the issue. She at 3 1/2 still doesn’t eat very much but at least she eats now. She seems to just be picky now. I still give her formula and baby squeeze packs so she will just get her nutrition. No one has ever or still doesn’t think it is a issue since she is now on the charts and gaining weight normally. I tried to get a feeding therapy set up at 2 1/2 with her speech people but they gave up after 5 sessions cause she just totally rebeled against the food. She is a smart, healthy active kid just won’t eat. I am gonna check out this site.
Dear Deva, I follow you from Chile! I relate sooooooo much with this post!!!! My fourth daughter started failing to thrive at her second month. Luckily my pediatrician is spectacular and listen to me about how I hear the baby reflux when she was laying in bed…. so that plus not growing enough put her on alarm and told me that maybe I was going to take her to a gastroenterologist. With my other girls I never had this problem so I was really worried and tried to feed her all day long. But when she turned 3 months old I had to put her the rotavirus vaccine… after 3 days she started having diarrhea. Well I took her to the specialist and she talked to me about APLV (Spanish acronym) of Cow’s milk protein allergy.
So I started a free diary, soy, nuts and fish diet and she started gettin better. Now she is 1 year and 4 months old , she is still little but she is in the chart!! And now she is eating almost everything.
In my country now a lot of pediatrician are acknowledging that milk is very hard to process and that babies sometimes the don’t just have colics…. Also there are doctors that says that this is just a trend, luckily they are the least.
Is very difficult to have a child with this and also to keep that diet (some people call it the love diet ).
I hope every mother that is living this has a lot of support!!!
(Sorry if my english is not quiet good!)
I love your blog, videos, etc!!! Thank you so much for make me laugh about parenting especially when I’m becoming crazy with my 4 little girls!!!
((((hugs))) I am so relieved a dr finally listened and it was figured out why you daughter wasn’t gaining weight.
My daughter is tiny and she has consistently been tiny. Tiny but healthy. When she was 3 or 4 I took her to a (different, but in the same practice) pediatrician thinking she had a UTI. I wanted to get her started on medicine before the holidays. The dr walked in and says to me she’s too small and I am sending you for tests. I then watched her type into my daughters chart… FTT!! I left the appointment terrified that there was something seriously wrong with my daughter. I took her right away for the bloodwork and X-rays, and then had to wait until after the holiday to get the results. All the results were negative for any diseases because there was absolutely nothing wrong with her!! Her regular pediatrician called me to reassure me that since my daughter has always been tiny that he was not concerned about her growth. She is now 7 and in 2nd grade and weighs a little over 40 pounds.
Elaine Gottschall:
Being a mother is seldom easy, We mothers, have time and again been compelled to act with heroism and self-sacrifice for the sake of our children. In our determination to rise to a challenge and overcome it, we sometimes reach beyond all expectations; revealing hidden talents that bring blessings to others in ways we never would have imagined. Though we set out to save a child, in the process find ourselves changing the world.
Young Elaine Gottschall harbored no lofty ambitions of changing the world. Back in the 1950s living with her husband Herb and two small daughters in suburban New jersey, she considered herself and average American housewife – “your typical ‘Leave it to Beaver’ mom,” as she reminisces today. She thrived in her role as wife and mother, content to lead a quiet, “normal” family life in blissful obscurity.
Then calamity struck. Elaine and Herb’s four-year-old daughter Judy became dreadfully ill. Diagnosed with severe ulcerative colitis, she suffered acute, chronic intestinal distress and bleeding that was unresponsive to standard medical therapy. Despite Elaine’s frantic attempts to find something, anything, that Judy’s system could tolerate, no food would nourish her – instead it would rapidly pass right through, almost completely unabsorbed. Yet the doctor insisted that food had nothing whatsoever to do with her illness. As the sickness and malnutrition took their toll, the little girl stopped growing, and her sleep was disturbed by frightening episodes of delirium. Frustrated by the failure of one medication after another to stem the relentless course of the disease, Judy’s doctor gave Elaine and Herb an ultimatum; either consent to surgery to remove their daughter’s colon and attach an external bag for the collection of waste, or watch her slip into further debilitation, even death.
Overcome with helplessness and despair, Elaine broke down sobbing. Incredibly, instead of attempting to comfort the anguished mother, the doctor pointed an accusing finger at her and exclaimed, “What are you crying about? You have done this to her!” That humiliating incident left lasting scars, but it was to become Elaine Gottschall’s defining moment.
Refusing to accept one doctor’s opinion, Elaine and Herb desperately inquired of specialist after specialist, hoping to find one who would offer a glimmer of hope and a different approach. Yet, no matter where they turned, they were handed the same ultimatum: if the standard arsenal of drugs cannot keep the symptoms under control, surgery is the only alternative. (It was also reiterated that – despite the fact that this disease primarily involved the very organs that digested and absorbed Judy’s food – the type of food she ate was irrelevant.) Just when they had become almost resigned to their fate, a chance encounter between two friends led to Elaine being given the name of then -92- year old Sidney V. Haas, MD, in New York City. Dr. Haas had developed his nutritional approach to intestinal healing over a long, illustrious career, and wrote a textbook, which could be found in nearly every medical library in the world. His colleagues, however – unschooled in nutrition and dismissive of its importance in maintaining health – had abandoned his work in pursuit of new versions of the same standard drugs and of increasingly complex surgical procedures. Though Herb couldn’t bear to see Judy undergo even one more painful diagnostic procedure – and their doctor ridiculed Dr. Haas and his methods as outdated relics of another era – Elaine was determined to hear what the kindly old doctor had to say.
After carefully examining Judy, Dr. Haas asked Elaine simply: “What has this child been eating?” No doctor had ever asked her that question before. He then instructed Elaine in how to implement his simple nutritional approach. Within ten days of starting the regimen, the child’s neurological problems diminished. Within a few months, her intestinal symptoms began to improve and she started growing again, making up for lost time. Within two years, she was symptom-free By this time, Dr. Haas had passed away. Elaine feared that, unless someone acted to carry on his legacy, his simple but effective remedy for digestive maladies would die with him, depriving other patients of the chance to stop suffering needlessly and achieve true intestinal health. She visited a medical library and poured over journals, soon discovering that Dr. Haas’s approach was well supported by sound scientific evidence. At Herb’s urging that she “find out what is going on,” she entered the halls of academia and the research laboratory at the age of 47, and earned degrees in biology, nutritional biochemistry, and cellular biology.
As her years of research wore one, Elaine began to experience a gnawing sense of disillusionment – fueled in part by her fellow researchers, failure to share her interest in integrating all of the evidence for the effects of food on intestinal health and translating it into clinical practice. She despaired of all her hard work ever being channeled into helping real people who were suffering – people whose doctors might never recommend Dr. Haas’s approach. Elaine came perilously close to giving up but Herb refused to let her quit. He convinced her that the only way to get Dr. Haas’s message out to those who needed it most would be to begin private consulting and eventually to self-publish a book and make it accessible to the lay reader.
…And that is how Breaking the Vicious Cycle; Intestinal Health through Diet was born.
Now in its eleventh printing in 2004, Breaking the Vicious Cycle has been translated into several languages, and enjoys a worldwide following. Elaine is available to help people who have been unable to find an answer to their questions in her book, this web site or on the various listserves. She assists many people suffering from (or caring for a loved one who suffers from) Crohn’s disease, ulcerative colitis, IBS, celiac, diverticulitis, autism and cystic fibrosis and other ailments rooted in the digestive tract. She unselfishly devotes much of her time, free of charge, to helping people- answering many questions, or pondering new ones. Counseling, encouraging, sharing laughter with, and yes, “mothering” her vast “extended family” of intestinal-health devotees. And what a diverse family it is: including people from all walks of life, of nearly every nationality and religious faith.
It’s been quite a journey for Elaine Gottschall. Never in her wildest dreams could she have anticipated the many lives that would be enriched by her knowledge and selfless dedication to helping others. She truly is changing the world, and it all began with a child.
http://www.breakingtheviciouscycle.info/