Becoming an Advocate for Your Kids

Reflux, it’s common for babies. Two of my 3 kids have it. My youngest two had/have it where just about any time they eat they throw up. Outfit changes for us have become something we do throughout the day. Burp clothes fill every room of the house to ensure one is never far out of reach. No matter what I tried for them it didn’t help. Elevate the crib, keep them upright 20 minutes after eating, burp often.. it didn’t matter I would still find each laying in the crib covered in their own spit up. The doctor suggested medication for our daughter and the difference was almost night and day. Her reflux didn’t completely stop but it was considerably more manageable.

Then things changed. It all started out of the blue one day. I went to change my daughter’s (at the time 5 weeks old) diaper for at least the 10th time that day and there it was, blood. It wasn’t a lot but it was something I hadn’t experienced with my older child (at the time 2). I decided I’d keep an eye on it and if it happened again I’d call the doctor. Not long after it happened again and then yet again. I called the doctor and they wanted to see her right away. A milk allergy seemed to be the culprit but they wanted to do some further testing to rule anything else out. Do you know how hard it is to get a stool sample from a 5 week old?! Let’s just say it is not fun nor easy! But, everything came back normal.

I started eating dairy free and although it takes 1-2 weeks for the milk protein to leave breastmilk things were not improving. In fact things were getting a lot worse. She constantly was screaming in pain. It was ear piercing and gut wrenching to say the very least. Her pediatrician decided it was time to seek further help and sent her to Blank Children’s hospital to see a GI specialist. Funny enough the specialist we saw actually treated me when I was younger for celiac disease so I knew we were in good hands. Of course, like all children when they go to the doctor their symptoms and sick demeanor magically disappear making it seem like your child is fine. But, I kept advocating for her. I kept insisting this was not “normal” behavior. She was in pain and needed help.

They decided she would need to do a colonoscopy. Yes, a colonoscopy on a now 6 week old. They don’t give them anesthesia because of being so small. The nurses said she was the smallest they have ever done one on. I remember handing over my baby to the nurse and then anxiously waiting. This was a relatively small procedure and yet so painful to hand her over. I can’t imagine the feeling parents have where the procedure is much bigger. When they came to get me there she was just sleeping in the nurse’s arms and she did great.

The result; she had a rare condition which caused tumors in her GI tract. It’s common for babies to be born with very small masses in their GI tract which go unnoticed, cause no harm at all and go away on their own. However, in the words of Genevieve’s specialist “her GI tract looks like cobblestone because she has so many.” What was happening is she had so many that when she need to have a bowel movement it’s was restricting the flow, making the tumors rub together causing ulcers which caused the blood and resulted in a lot of her pain. There were a couple silver linings though; first the biopsied tumors were benign, second there was no sign of a milk allergy, third the inflammation in her stomach was causing most of her reflux issues and lastly it would all eventually go away on it’s own. On top of the tumors she also had some how gotten rotavirus. However, later we discovered the rotavirus would actually help her because she had a lot of “old” blood trapped in her GI tract and it was flushing it out.

The specialist told me she should out grow it by a year. It’s been a long journey since they figured it out. Her stomach is very sensitive so we have to be careful what she has or else it’s a mess for everyone. She turns 3 in one week and we just celebrated 8 months without a single episode! It’s taken a lot longer than that year they project but that’s okay.

In April we welcomed baby Elijah to our family. When he was a newborn he showed signs of reflux. I thought it was even worse than our daughter so again we tried all the natural ways but to no avail. We put him on reflux medicine and he couldn’t even keep it down. I started splitting up his dose to half in the morning and half in the afternoon and most of the time he could keep it down but there wasn’t improvement. My husband was able to get a full dose down twice but both times he threw up throughout the night. Then all of a sudden we noticed a rash all on his face and neck. I thought it had to be from all the spit and vomit that was constantly touching his skin no matter how fast we’d wipe it off. So I tried different creams and ointments, trying to keep it dry as best as possible and nothing was working. It hit me one day, when Elijah was able to keep his full dose down he threw up all night and he didn’t start getting a rash until after he started this medicine. My thought was he has to be allergic to it. We stopped it right away and within days everything cleared up. Of course the reflux was still there but the profuse vomiting all night and the rash were gone. I brought it up to the pediatrician at his next appointment and because we have built a relationship he trusted me and thought I was right and it best not to continue his medicine. I would just live in a world of lots of laundry, burp clothes, spit up stains on my clothes and smelling of baby puke, but they are worth it right :).

Fast forward to two months ago, Elijah (3 months at the time) got sick and guess what his biggest symptom was, you guessed it blood. I tried not to panic and jump to conclusions. Again, he presented as healthy but he too had started screaming in pain a lot. We loving nicknamed him our pterodactyl because that is what he sounded like.

So again I advocated. I remember telling our pediatrician both times “I feel like I’m crazy but I know something isn’t right. This isn’t how our baby acts nor how any baby should act.”

The doctors quickly got to work and discovered he had rotavirus. Guys, it’s like I was in a nightmare or groundhogs day. Fear slowly started to creep in. What if Elijah has tumors too? What if it’s 3 long years again of watching him be in pain and trying to figure out how to help him? What are the odds that 2 of our babies had the same rare condition? What about a future baby, would they have it too? I felt so much guilt and shame that somehow 2 of our kids got rotavirus and even though it’s common I hadn’t heard of any other kids i knew having it. I felt like a bad mom. I even asked the doctor and a good friend that’s a nurse what I did wrong that they got sick. But friends, none of that is true. Fear can be so crippling when we let it but surround yourself with supportive people. People who tell you you aren’t crazy for knowing something is wrong. Who tell you it isn’t your fault for your babies getting sick. Doctors and nurses who assure you you’re not doing anything wrong.

The doctors came up with a plan to monitor Elijah and if thing hadn’t gotten better in two weeks we would take him to Blank and see a GI specialist. My heart was sinking. I went off dairy and again things got worse. This time we decided we’d also listen to our guts. We decided I’d go back on dairy and see what would happen. He was okay. He stayed symptom free for a week and then the blood came back. We have now seen a specialist and done extra testing with still no sure answers. Our pediatrician believes his rotavirus was so bad it messed up his GI tract so much that it is just taking longer to heal. The good thing is we don’t believe he has tumors like our daughter. It’s been over 3 months since he had the virus and he is just now starting to bounce back and we are so thankful.

I write this to say, advocate. Advocate, advocate, advocate. Your child can’t always tell you what’s wrong or maybe explain it best. However, YOU know your child. We love our pediatricians but we also know they can’t see the whole scope of our kids because they aren’t with them all the time like we are. Speak up and don’t be afraid. I use to be afraid to call the nurses one too many times or to ask one too many questions but now I know that’s what I need to do to help our children. Find a pediatrician that you trust and will listen to you. You don’t need to settle and you shouldn’t. Your sweet babes deserve it and so do you!