At times, parenting can be a complete guessing game, right? We like to think we know what we are doing, but are quietly questionning our every move and decision. Are we feeding them the healthiest diet available, are they excelling as they should in school, are they doing enough extra activities, are they doing too much, should we be doing more….I could go on and on. If you don’t agree with this, please share you secrets and knowledge, because I question myself constantly. Especially with Logan.
As you know, Logan cannot communicate exactly what her wants and needs are, and she cannot tell me exactly what is bothering her and where. We are always working on this, trying to model it with her Tobii (communication device), pointing to areas of her body and asking her “yes” or “no”, but it is so, so difficult to get an answer, especially when she is in pain. I do know that 90% of the time her pain is gut related. And staying on top of that can feel like I’m sinking in quicksand while trying to pull myself up on a vine that will snap at any moment.
Back in the beginning of the pandemic we went through the roughest times of our lives with Logan. Long story short, she was in extreme pain, we thought it could be SIBO, our then GI doc said no that it’s just gas (!), we found a holistic doctor to treat the SIBO along with a new GI doc and a new plan, she got better, we’ve been maintaing ever since with a special low FODMAP diet, but we aren’t in the clear. It has always been our plan to watch and see, and eventually do another GI scope – endoscopy and colonoscopy – down the road. Well, instincts kicked in sooner than anticipated.
Having Logan on this special diet has helped, but I honestly am just guessing. I’m hoping that I’m choosing the right foods and making the right substitutions, and I know Logan is bored of eating the same old thing. I’m scared to try anything out of our box, worried that the temporary flavor excitement will cause her pain the next day. Here is yet another thing she is missing out on – carefree endulging! Well, we were on a good roll, then we all caught covid in January. We had been working with a functional medicine doctor since the summer, all focusing on a plan for when we would eventually catch it. It centered around lots of supplements and maintaining a healthy lifestyle. So, when we all caught it we upped the supplements. Even for Logan. I knew it had the potential to really set us back with her GI stuff, but I felt that was the lesser of two evils. She did great with covid, but developed some inflammation that we treated with steroids. She was back to normal. For a bit.
She started becoming easily aggitated and aggressive again. When this happens, when she feels pain she bites herself, and when it’s really bad she attacks whoever is there, but usually me. It’s something you can’t get mad at her for – she has no other way of communicating her pain! But it’s also something that is very hard to take as a parent, more emotionally than physically (but man is she strong!).
We tweaked her diet, upped her tummy meds, but it wasn’t really helping. She wasn’t doing well at school, and was all out of sorts. She clearly wasn’t feeling well. I was worried SIBO was flaring up, but her symptoms were much milder than the first go around. Was it SIBO or Covid aftermath? Again, I was guessing here, but went with what I thought my gut was telling me. I asked if we could do another scope. Our doc did not hesitate one bit, which was so refreshing.
Of course our scope was scheduled on the last day of our spring break, which we spent in Topsail Beach with a two of our favorite families. Logan and I stayed for one full day, then drove back so she could do the prep. Let me tell you something about Logan. She is a fiesty, stubborn little stinker when it comes to any kind of medicine. She’s smart, and knows when it’s coming. It usually involves me wrestling her to squirt it down her throat, and I rarely am successful on the first try. I had been anxious about this prep for weeks, knowing it would be hard, and that it would be me and only me to do it. I was prepared mentally. And guess what…it was a breeze! No fighting, so wrestling, no tears. She knew she had to do it…or so I am guessing.
We were at UNC bright and early the next morning (5:30am!), and things could not have gone smoother. We took her “Gypsy Wagon”, which was a life saver! All you special needs parents…if you don’t have one…get one! She was so flopsy afterwards and this allowed us to leave safely in style and comfort.
Now for the results. I was right. She clearly has SIBO. She had villous blunting in the duodenum (the first part of your small intestine which absorbs nutrients for the body), which means an injured duodenum, which means SIBO for her. Our doc described it as so…hold out your hand. Your fingers are healthy, uninjured villi, and on the tips of these villi is where everything is absorbed. Now, bend the top of your fingers down, almost into a fist. This is what Logan’s villi looks like, so no absorbing tips. Thankfully it can be repaired with a series of antibiotics.
Since we’ve been down this road before, we knew what to use and what to stay away from. There was one med that sounded new to me, so I asked our PTHS Facebook group. I’m so glad I did, because I apparently asked about this same one years ago, just under a different name. For our kids, the side effects were awful! We quickly found an alternative, but it honestly wasn’t much better. She toughed through it though. We just finished the last round earlier this week, and I am so thankful. Logan sometimes has a hard time with antibiotics, and we definitely saw it these past couple of months. She is easliy irritated, doesn’t want to eat much, her teeth temporarily turn gray (!), and is just overall not her sweet little self. I’m happy to be done with them for now, but I’m worried it didn’t work 100%. She is still getting very bloated, but I’m hoping that’s from her breath holding episodes. We have a follow up scope the end of June, so I’m praying for a healed gut.
Oh, they also found that she has eosinophilic esophagitis (EoE). It’s basically an allergic condition that happens in the esophagus, either food related or environmental. At this point we are not sure which, but I’m hoping it’s environmental. I’m not sure I can handle more diet tweaking. She’s on reflux meds for this, then if it is still there when we scope we will treat with a round of steroids. It turns out that quite a few PTHS kids also have this. Once again, the parents have been an extreme help in navigating EoE.
So, this is where we are at. It’s been a rollercoaster for all of us, and I honestly cannot imagine how it’s been for Logan. She is the toughest person I know. A beautiful, stubborn, fiesty, strong, sweet little firecracker is what she is. Which makes me so proud.
*This main image of Logan and David has nothing to do with this post, but it is just so sweet. This was from a recent ER visit, that ended up being constipation. Of course.*
3 thoughts on “Oh, It’s You Again”
You are so descriptive….I was right there with you in every experience you cited. I’m amazed and thrilled to call you a darling mother giving everything to make things work.
I pray for you, agonize for you, and rejoice with you and your sweet family……BUT I would love to do something more.
We try to donate to Pitt Hopkins and will continue to do that but I would like to do something more personal. If you have a need or even just a “want” let me know.
With more love than you know,
Oh Sharon, you have always been such a huge supporter of ours in every way! I’m thankful I’m surrounded by moms who show me how to go above and beyond for their children. You are one of those women for sure. Lots of love to you!
So sorry that Logan ( and you) are struggling right now. Covid created a new set of problems for nearly everyone, but I’m sure that for Logan, those problems were magnified. I hope that you will be able to enjoy your next trip to North Topsail to the fullest. It always acts as a restorative for us. You are amazing! Prayers for all of you.
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