We saw our GI doc again in April. He upped Eli's Nexium and also recommended we start another drug, called Reglan, to help with gastric emptying, as he felt that Eli's tummy wasn't moving things through fast enough. Reglan has some scary side effects, and I decided not to give it to him. However, he also diagnosed him Milk/Soy Protein Intolerance. We had probably missed this all along because I hadn't been eating dairy- I had gone off of dairy (mostly) when Eli was born because I knew my husband had problems with it as a baby. I will do another post about that, but we had sort of ignored his MSPI issues because his reflux was so bad- I didn't know the two were interrelated. The GI doc had no real advice except to switch him to formula. Anyway, I decided to get serious about the MSPI so we thought we'd go ahead with that- the expensive kind of formula - that didn't have any Milk or Soy. However, Eli had other plans, and he refused the bottle. So I started researching how to breastfeed with a baby who had MSPI. I finally got some help from this blog, and my friend Hailey, whose baby Knox had it too.
I had no idea how much soy I was ingesting, and also feeding to Eli directly, through Gerber Rice Cereal. The night we stopped the Gerber cereal, Eli slept so much better. He also began to nap better in the day. I was shocked. I went on a strict no dairy/no soy diet. This has been an additional personal struggle for me because I LOVE DAIRY and I love food in general. But seeing the change in Eli made it worth it.
I was now able to go to work one morning a week, thanks to my wonderful friend Ann Marie who watched Eli for the morning. Her baby Hailey had colic, so she was familiar with the challenges and told me she'd hold him all morning if that's what he needed. Thankfully, she didn't have to do that every time because he was getting better, but I was so incredibly grateful to her because I knew I could count on her to love my baby and care for him, even if he was fussy and sick all the time.
We also were able to start putting him in his crib for naps. It was a miracle- one day after he'd been at Ann Marie's all morning, we came home and it was naptime. He was clearly wanting to play, so I put him in his crib and sat down in the rocker. He played and played and then got silent...I looked over and he was ASLEEP! I couldn't believe it. We were able to keep moving forward with him napping in his crib and it was a huge relief to all of us.
Remember how I said that reflux is back and forth? We often say it's two steps forward, one step back. He was doing better, but then new, strange symptoms started showing up in May/June. For one, he started actually throwing up. Tons. He vomited all over me all the time. And it was hours after he'd eaten. Often times, he'd nurse, be up for 3 hours, take a 45 minute nap, then wake and vomit. So we increased his Nexium again. But as time went on, he got worse and worse again. He couldn't be in a sitting position without vomiting. My mom was watching him during this time and noticed he was regressing. It became more than two steps forward, one step back. It became 2 steps forward, 12 steps back. He was a wreck again, most of the time. At night, he'd sleep maybe 3 hours, then be up all night- crying, fussing, etc- I'd hold him and walk around the room, and he'd pull his knees up and squirm and scream. It seemed like he was in pain again, but maybe a different kind of pain.
I had finally had it with our GI doc. He was helpful in some ways, but because Eli was growing great, I felt like he had brushed us off. I wanted to hear from someone else. I knew there had to be another piece of this puzzle. I called and talked to the nurse, and she actually recommended switching to another doc at Children's Mercy. Her name is Dr. Jennifer McCullough, and she is about my age- she actually has a daughter who is one month younger than Eli. We met with her in August. She recommended a scope for Eli, where they would look at his esophagus, stomach and part of his bowels. She also said he was taking way too much Nexium for her comfort (we later found out that Nexium can actually INHIBIT gastric emptying, which would explain his vomiting and the fact that he was getting worse instead of better), and we had to trust her as she switched him back to Prilosec. We were terrified, and the first weekend we switched was a disaster. But then it got better. Eli had his scope (a test the first doctor should've done a long time ago). The night before his scope, we had to give him an enema. He cried through the whole thing, but then slept better than he ever had before that night. So we knew there were probably some lower GI issues going on as well. The scope revealed that he had some colon inflammation. Dr. McCullough decided this was possibly due to constipation issues. We started him on some Miralax, and things began to "flow", so to speak. Constipation doesn't mean he doesn't go very much- in fact, he went pretty regularly- but it means the colon doesn't empty completely, and gets irritated and swollen. This seemed right in line with his symptoms. His overnight cramping stopped, and he seemed to finally be comfortable! So...
I appreciate if you've read this far. Basically, I wanted to chronicle what we've gone through and post it so if you're having any similar issues with your baby, you might know where to find help. Eli has some fairly minor Upper and Lower GI issues, but they completely wrecked our life for awhile.We thought reflux was the only culprit, but had to press on to discover the MSPI and the way his constipation was affecting his colon.
For me, part of this journey has been about remembering that I am Eli's advocate. He can't tell us what's wrong, and he certainly can't call the doctor about it. There were times I felt like the nagging mom who had to call the doctor for the hundredth time. But I knew he was feeling terrible and I wasn't going to just be ok with that. So I pushed. And pushed. And finally got some answers and help. Don't get me wrong- all the doctors we've seen tried to help and agreed there was something wrong that needed fixing. But it took lots of follow-ups and phone calls to figure it out, and I had to be proactive in learning about the issues myself.
So where are we today? Well, Eli's taking Prilosec and Miralax regularly. He's starting to eat solid foods (we met with a dietitian this week to discuss how we'll move forward when I'm done breastfeeding since he can't have whole milk). He is taking 2 naps a day in his crib- usually one short one and one long one. He is sleeping better at night. He isn't in constant pain. You can see on his face that he's finally a happy kid! He's super active and running me ragged! So now it's about managing his medication, being careful about foods, and the every day ups and downs of being a mom to a pre-toddler (oh the teething!). But at least it's not about constant pain and agony for all of us!
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