Do you have a child with poor Gut Health?
Is your child on a special diet, have Gastritis, Failure to Thrive, or G-tube fed?
This our story.
When Eli was born he had a few different issues, mainly being allergies which doctors first assumed was a bad case of eczema. They also came to the conclusion that he was probably lactose intolerant and was put on a special formula. As he got older, we found out that he was severely allergic to eggs. As Eli started eating more solid foods, he became even more of a picky eater and by the age of 3.5 years old, wasn’t even eating at all.
After multiple hospital visits to our local children’s hospital, feeding therapy that didn’t work and would end up in meltdowns (because my son couldn’t verbalize what was going on or how he was feeling), the doctors diagnosed Eli with failure to thrive. They first tried putting a tube down his nose… You can only imagine how that went. It didn’t. So, they then opted for putting a Mic-Key button in. He went under surgery and it was placed.
Eli had many issues still and had to be put on special formula so he wouldn’t throw up the tube feedings. At that time, I even tried fresh and whole foods that were blended and put through his tube for extra nutrition (under doctor guidance) and hopefully kickstart his system to want to eat.
None of it seemed to really work and I always felt like something was still just not quite right.
But what?
Eli was scheduled to be fed his formula at night so he could get most of his nutrition in since he had to be fed in small amounts so he could keep it down. One night, his Mic-Key button balloon that holds the button in place malfunctioned while he was sleeping and his G-Tube came out.
I tried replacing it, but it wouldn’t budge. So, off to the hospital, we went again.
While at the hospital, the ER doctor tried using a metal looking rod called a “spacer” to open up the site and place the G-tube back in. Eli was screaming… I asked him to stop, I started raising my voice at him, and as I did he kept stating he was almost there and with force pushed the spacer in. After, he inserted the Mic-Key button back in place and sent Eli off to imaging to make sure that it was placed right. I remember just being so furious with this ER doctor that I could hardly breathe.
While I was waiting, the GI doctor came out and said that Eli needed to go into surgery as he led me to see my son that had just been through so much.
While sitting on the bed next to my son the doctor seemed a little panicked as he told me they needed to leave right away and that he would update me.
He said that my son was internally bleeding and that they needed to go in and stop it. He said when the ER doctor pushed the spacer through it somehow went past the initial surgical opening which created almost a new wound that resulted in internal bleeding.
While they whisked him away, a nurse came and got me and Carter who was very young at the time and took us to the Ronald McDonald House where we waited.
I felt my entire world just crashing around me. Like I couldn’t breathe. I just sat there in shock and nonstop tears just flowed down my face.
It felt like a lifetime for the doctor to come back. I remember being so panicked that he might come out with bad news. I felt like I was suffocating.
When the doctor finally came back from surgery, he said they were able to stop the bleeding and fix the wound, and that Eli was going to be okay.
Eli was given time to heal and then a new Mic-Key button was placed.
Of course, no more night feedings were given and we switched to days, having to feed Eli every two hours. I received nursing care to help with it…. My son’s quality of life was poor. We tried an automatic pump for school but Eli just couldn’t handle using it. It made noise, and the constant slow flow I think felt weird to him. We tried having the school nurse give feedings but for my autistic son, it was all too much so I decided to homeschool him for a while.
When Eli was about 7 years old, I came across an Autism Center that had opened up about 2.5 hours away from where I lived. I made an appointment for Eli and took him to see if they could help me find some answers or services to help my son. Because a lot of children on the spectrum seem to have gut issues, one of the things they hooked us up with was a GI doctor.
When Eli’s appointment finally neared, We took the trip back out and met with the doctor. He wanted to perform an outpatient Endoscopy procedure. So, we went home and patiently waited for his appointment.
On appointment day, we once again took the drive out and had the procedure done. The doctor came out with some absolutely unbelievable news and photos. Eli had Severe Gastritis. So severe, it looked like it had been like that for a very very long time. His stomach and throat were so inflamed, and he had scar tissue.
The Dr. said the chances were likely that my son never had Failure to Thrive in the first place, but since the hospital never checked for Gastritis and just opted for a G-tube, he now does have Failure to Thrive and severe gastritis.
The absolute agony my heart felt from hearing this. This meant that my son was in pain and suffering for such a long time. I was so angry, I was nauseous. The doctor put him on Prevacid to treat it.
Really? After all this time? An anti-acid capsule is what he needs?
When we had to switch back to the local hospital, I remember sitting around a table with the doctors discussing Eli’s care and I asked the doctor why Eli hadn’t been given an outpatient procedure like that? She explained to me that “They just don’t give outpatient procedures like that to children that young”. I expressed to her that this one decision to just assume what it was, cost my child years of discomfort. I later called the hospital and asked for a new doctor. I told them the situation and they obliged. Eli’s next doctor was a really great GI doctor that helped get Eli where he is today. A year or so later he went through another outpatient endoscopy due to having issues again and they upped his dose of Prevacid which seemed to help take care of the situation.
A few years later, after Eli had been constantly treated for Gastritis and after a lot of feeding therapy, we were able to take the Mic-Key button out for good, just a few days after he turned 9. That day is a day I will never forget! The excitement of all of this being behind us, for my son to get rid of what he probably never should have had in the first place.
Eli has a scar from the G-Tube that looks like an extra belly button, it bothered him at first… but he now seems used to it being there.
Eli still to this day has stomach issues but we manage them and he is on Prevacid twice daily for gastritis. I was told he would probably need to be on it for the rest of his life. Medication twice a day and an outpatient procedure sounds like a simpler plan than what he went through.
I am sure that the doctors who initially diagnosed my son were doing what they thought was right … the right diagnosis, the right protocol. Maybe they weren’t well versed in Autism (We have come so far even from then!), or that a 3 year old, someone that young could have gut issues. At about the same time Eli did go into the hospital with an anaphylactic episode where they tested him for a full panel of allergies. The results came back quite extensive, so you might think they would have seen there was something else going on besides Failure to Thrive.
Because Eli has sensory issues and was non-verbal, he was never able to tell us or portray it in a way that we would know his tummy hurt. He seems to feel pain differently and his sensitivities are just different. He does seem to have gotten better over the years with things as he has gotten older, but I always find myself trying to guess, take his temperature, ask if he feels okay, ask him to say “yes” or “no”.
We are our children’s biggest advocates. We aren’t perfect, and professionals aren’t always right either. It is good to get a second opinion, even if it sounds right.
It doesn’t matter if it is a #1 rated hospital, doctor’s office, etc.
There are so, so many times I have cried to God about this very situation and tried to make sense of it all. Why did it take so long to find the right doctor to know what to look for? Why did my son have to suffer? If anything, I truly hope my son’s story helps someone else.
Advocate. Advocate. Advocate. If you feel something isn’t quite right, keep searching. Even if it takes a few years to find the answer. It helped save my son from many many long years of pain and misdiagnosis.
I really hope that Eli’s story can help raise awareness. Things aren’t always what they seem… and sometimes protocol does need to be changed.
Autism Lion 