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.
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!
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.
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.
Breast milk- vomited
Green beans- 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)
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:
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 and DON’T GIVE UP! Its worth it!
AS MY MOM TELLS ME… YOU ARE YOUR CHILD’S VOICE! YOU NEED TO DO WHAT IS BEST FOR THEM BECAUSE THEY CANNOT DO IT FOR THEMSELVES. SPEAK UP FOR THEM. BE THEIR VOICE.
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.
Love this one! Our kids have always loved baking with Mommy! (Yes, even this came back up a few minutes later…)