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There comes a time where you just want to give up.   You fight & fight for your child, spouse, parent, friend… and you just decide to either give up or take it on yourself to find the answers.

Two kids standing on the beach with text beside them.

This was our family a few years ago.   Our second son was born small (at four pounds~ they induced me at 37 weeks), after a hard pregnancy.   Within days, he started to have so many issues with his GI tract and with his muscle development.    We thought that he wasn’t going to be able to lead a normal life (when they gave us his diagnosis)   (He has surprised us, to say that least!  He surprises us every day!)

I am including a bunch of pictures
… here is the first one~ the day of his birth 🙂
Our little four pounder! 

beau born

After a few months, he started vomiting and refusing to eat.  This was just the beginning.  I found myself telling every Doctor ” My child throws up everything that he eats. ”

I know what you are thinking: reflux.  That’s what the doctors would say, until they would see him projectile vomit several times during our visit.


My child throws up everything that he eats

He literally projectile vomited (not spit up, but vomited) every single bite of food or drink.    He started refusing to eat at all.   From 6 months to over two years of age, he threw up everything that he ate.

Apple- vomited.
Breast milk- vomited
Green beans- vomited.
Banana- vomited.

You get the idea.

They hospitalized him after four days of refusal to eat/drink more than an ounce a day when he was an infant.   My husband and I would wake up every hour at home and in the hospital to try to bottle feed him just an ounce of breast milk.   (His body was relaxed enough when he slept to be able to handle not vomiting, but we couldn’t push it.  If we got more than an ounce or two in, it would come back up.).   On a good day, he would drink 6 ounces TOTAL… in a 24 hour period.
A ‘normal’ day would be 3 ounces for the day (without food).


***Because he didn’t look malnourished, no one really believed us.   If he were longer, he maybe would have looked skinnier  (he is less than the third percentile for his height, in his age group  he still is today), but because he was so little all over, they just thought that I was crazy & exaggerating. ***

This is what he did every time we tried to feed him (bottle, breast, whatever… he just didn’t want it)

steeler 3

We tried formula, too, but it was always the same (now we realize that we could have tried that special formula for kids with allergies, but we had no idea at the time).

Oh~ and if he laughed, he threw up then, too.   We would have to tell everyone “Don’t make him laugh too hard.”   His older brother would even say “Oh no!  He’s laughing!”  Sure enough- he would throw up.  We had to keep our car seats (the backs of the driver & passenger seat) covered in towels because he would make such a mess with every ride, since he was a happy/laughing child!  (He still is such a fun kid!)

So, once they realized what was going on (the doctors), after seeing him vomit multiple times, they began doing test after test after test.   He was in the hospital so much.   Chapel Hill, Winston Salem, Charlotte… 

This went on for years.

I would like to tell you how we found out the reason for it, but we still don’t know (he is 5 now).  We were told it was probably FPIES.
Here is what we do know: 

1).  He tested allergic to every food that he was tested for (Skin test & blood test).   Here is his list from when he was one year old:
Screen Shot 2013-11-21 at 12.10.49 AM
Everything else was a one. 

We left our allergist that day without a plan.   He didn’t tell us to do anything different, so we fed our child and watched him deal with this for two years.

Finally, at the age of 2 1/2, it stopped.   He had lost over a years worth of growth (the Doctors tell us that he will never catch up from that time that he lost~ height & weight), but the vomiting has finally stopped.

He is now about the size of our 3 year old and he is 5 1/2.   Most people think that they are twins.

We had him re-tested  for allergies last month and he is now completely allergy-free.

We have considered these causes: 

  • FPIES – a severe allergy to a LOT of different foods.  You outgrow this by the time that you are 3, on average.  This is why we think it might be the case, because he did outgrow his allergies.
  • Hypertonia- he has this anyways (severely tightened muscles).  If the outside of his body has tight muscles, the inside might, too.  Because of the vomiting, they ran many tests on him from barium swallows to endoscopies.   After every ‘test’ where they put a tube into his throat (about 5 or more times in those few years), he did well for several weeks afterwards.   Related to the hypertonia,  we feel like maybe they stretched him internally, but the Doctors thought that this was ridiculous, but if they would have just ‘listened’ to me instead of just humoring me or dismissing me as an overprotective Mom, I think that they would have found my research to be true (and trust me- I researched every symptom like crazy!).
  • Hiatal hernia – I still think this may have been the case because I have read that it can hide so it may have been missed on a test, but the symptoms are very similar to what he had.

I often wish that I was Oprah- her Doctors all work together.   I wish that it were the case for us… all of our son’s Doctors, sitting in a room, discussing his case and not leaving until they find an answer.  How wonderful would that have been?  

* We wanted “House” as our Doctor! haha!

The point of this post is to say that if you ever feel defeated at the Doctors, I can relate.

I can understand when they tell you that your child “looks normal” or “Looks healthy” when you know that they aren’t.

I can relate when they say “he will be fine” when you are scared to see what the next month holds for you.  When you are scared that your child may not live to see a few more months.  

I can feel your frustration when they say “You are just worrying, just like a Mom.”

You know what- they told me all of this, too.  I finally found a Doctor that helped us.   He believed me.  It took us 19 specialists (Duke, Chapel Hill, etc…) to find him, but God brought him into our lives and he has helped us in so many ways.  HE LITERALLY SAW ALL OF THE THING THAT I HAD BEEN TELLING EVERYONE AND HE RECOGNIZED IT ALL ON THE FIRST VISIT, WITHOUT NEEDING ME TO TELL HIM.
He is a more natural doctor, so he didn’t tell us to take reflux medicine upon first glance.  He listened to our story and gave us real solutions that have worked.  He gave us a real medical diagnosis and he was SPOT On!
He pointed us in the direction of other specialists and therapists that have helped us even more.   (He is the one that also gave us this great speech & nutritional advice)

trust your instincts, Moms!
So, my advice for you today is to just keep on keeping on.  Trust your instincts!   You know when something isn’t right… whether it be with your child, your spouse, a friend or yourself.   


ps- Read the happy ending to our son’s story here

Just for fun- here are a BUNCH of pictures of him growing up! 🙂  (ps- look for the chocolate brownie batter one… my favorite!   Like I said- we tried everything! LOL!)

To our sweet boy~  I thank God every single day for you and your siblings.   We are blessed.
You are amazing.
You are wonderful.
You can break down walls that are built right in front of you.

You were made to fill a purpose, that only you could do.  There could never be a more beautiful you. steeler 4
Love this one!   Our kids have always loved baking with Mommy!   (Yes, even this came back up a few minutes later…) beausteeler 2steeler 1beau1horse

laughsour sweet kids!

Hi there!

I’m Becky, a former elementary school teacher turned certified child development therapist and blogger. I work at home with my husband and together we are raising (and partially homeschooling) our four children in the Carolinas. I love diet coke, ice cream, and spending time with my family.

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  1. Every time a read a story like this it makes me realize how lucky we were/are to have the team of doctors we’ve had working with our daughter. They have always been quick to ask me for my opinion, saying “you know your child better than we do,” and they have been trusting of me when I think something is wrong. Even when it turns out to be nothing (which has happened a couple of times). I am glad you found someone to work with who has been a comfort and given you confidence in them. It is so very important! Glad he is doing better. My daughter just made the growth charts this year (she is almost five)! She is now 3-5 % in both height and weight! 🙂

    1. Thanks- it was actually our neurologist that offered us the most help (even with his GI issues). He’s been wonderful!

      Yay for making the growth charts!! 🙂 I’m hoping that he’ll get there one of these days! 🙂

  2. I love this Becky! I needed to read this, it really tugged at my heart strings! My son has continued to stay sick from the time he was born. It has been a constant battle and the doctors always make me feel as though, “oh he is just a baby, babies get sick.” The meds never really work, he has been on Allergy meds, etc. He is almost three now and we just had him tested for allergies which all came back negative! This has left me even more frustrated because I thought maybe we would have some answers! He is sleeping so much and always looks tired under his eyes! I want a second opinion even though the Doctors are telling me he is just a toddler! There is something going on with him and his father and I want answers! Your post has only confirmed that we are doing the right thing by getting a second opinion! Thanks so much for sharing! ~Leah~

    1. I would def. get a second opinion. Our first Dr. told us that he was fine (with his muscle dev.) but then when we took him into the neurologist ANYWAYS, they said “He needs an MRI immediately” and put us in therapy, which he had for 3 years, 5 days/week. If we hadn’t done that, he would not be walking/running like he is today. Trust your instincts, Leah. You are a great mom & you know him better than they do.

      1. what was wrong with him cause my son is having the same issues pls text me back and let me know he has a gtube because he can’t eat by mouth but everytime i feed he throw up so bad sometimes i just want to give up he’s being like that since he was three months now hes fourteen months and doing the same please help me or at least advise me thank you

  3. Oh, my, we have SUCH a similar story!!! Our son had refusal to eat (yes, an actual “diagnosis” from his doctor), vomiting, lack of growth but “looked good,” and nothing “normal” could be found wrong with him! Then, the doctors started blaming us as his parents. WOW, it was awful, but GOD sustained me. Anyway, then we moved two states away, found another doctor (at Riley Children’s GI center in Indianapolis), and we finally found out a big part of what was wrong. Our son had “delayed gastric emptying”!!! Made perfect sense with everything. They still don’t know “why” he had this, though. My hypothesis is “genetic diverticulosis.” Most Diverticulosis is thought to be a result of years of constipation, but what if children can be born with it, and the “fingers” extend inside, thus slowing down the movement of food? Maybe I’ll never know, and that’s okay. Anyway, our son ALSO stopped vomiting, around age 3. And Riley Children’s was able to help us increase calories without increasing bulk, so he eventually got to 50% on the chart in both height and weight!!! Riley nutritionists recommended such things as putting oil in his milk (yuck, but he drank it!), offering high-fat dips, feeding often (but not disturbing his sleep to feed him more), etc. He was also on Propulsid for a while, but Propulsid has since been taken off the market because of risks. Well, that was a long comment; I hope you don’t mind!

    1. Wow! I wish we had been able to talk & share tips a few years ago!! I would have loved to have known those things (not to disrupt sleep, oil in milk, etc…)
      Thanks so sharing, Christa!

  4. Good for you and sticking up for your child. I agree that no one knows my child better than me. I used to take the kids into the doc when they were babies and they would be acting normal and no fever but very fussy at night. They’d ask me I was bringing a baby in cause they were fussy? And look at me like I am nuts and overprotective. come to find out their ears would both be badly infected.

    I live near Duke/chapel hill, do you live in NC?

  5. Hi’
    Your story gave me a deep insight into my son’s multiple issues and vomitting,even after full stomach,after a laugh,after a cry or dry mouth etc still husband has less insight into medical issues and his deep faith in God insists himself to believe our son will grow out of everything,but as a nurse i knew there was something wrong since he was a month old.we are awaiting tests now and I have decided to be my sons advocate…..truly inspirational…..

  6. Hello! I just found your blog today and i am limited on time this morning ( plan to read this and other posts fully later), but as i skimmed through this, i wonder if pyloric stenosis ever came up. My son, started PROJECTILE vomiting suddenly at just 3 weeks old. After fighting doctors that it was NOT reflux, and me being the “Crazy new first time mom”, and two ultrasounds, and upper GI, they finally believed me and he had surgery at 3 weeks old…( thank you hershey medical center) . I will stop there, because even though it was only about a week of our lives, the impact has stuck. I tell everyone i know to go with that maternal/parental instinct and fight for your child. It sure sounds like you had to do that , but for years. I don’t really ever comment or reach out to “bloggers”, but from the little bit i have read this morning, i just felt compelled to do so with you. I look forward to exploring your blog more! thanks so much

  7. My sister’s son is 4 years old now. She told me that from birth he vomits everything he eats or drinks. Even he vomited the breast milk she fed him once(not everytime but sometimes). Even he does not wants to eat anything. He thinks he is full and he do not want to eat anything. Everywhere on Google or any other website, I am only finding reasons like reflux, etc. This is the only page I have find something different. I am happy that your son is fine and I want to help my sister. I know you are not a doctor but can you help me somehow? Like can you suggest me some medicines?

    1. I wanted to be sure that you saw my e-mail (I sent you one with some ideas).

  8. Hi Becky, thanks for sharing your sons case.

    Good to hear that his vomiting issue is now gone.

    My daughter is 18 months old and vomits on every bite of food she intakes.
    I’ve consulted 7 pediatricians till now however none of them are able to diagnose the issue.
    I am 100% sure that my daughter is suffering from same kind of issue.

    Please help me and my child…
    Let me know what food/ medicines/ test have helped your son to get over this vomiting issue.


    1. Look into FPIES. It’s a VERY rare allergy where you are allergic to all foods, until the age of 3-4.

  9. Our baby has a similar condition. He stopped breast feeding at 6 moths . Since then he refuses to eat and vomits almost everything that goes into his stomach. However he willingly takes water and really takes a lot of it but vomits it out after taking bit

  10. Can you tell me what your son had my son is 13 and vomits all day everyday he has had multiple testing done drs cannot find anything wrong and most we have seen do not believe us he’s on several medications none have worked, please email me the answer you got thanks

    1. It was linked to two things: Hypertonicity and FPIES (allergic to almost everything).