Revolutions

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Longest yet! I’ve done it, I’ve gone the longest without updating this blog ever!! Wow what an accomplishment!

Somewhere in the last 16 months these things have happened:

  • Insomnia: The night time check-in routine was Successful. I have to say it’s been a huge tool in our lives. While this check-in routine accomplished a shorter bedtime fiasco, and a child that can fall asleep while no one else is in the room with her, it did not however change much about her wakefulness at night. We’ve got that down to only 1 or 2 incidents a night, the occasional fluke total sleep night. And a quick couple minutes of soothing and that’s usually the end of it. Ok, so semi-successful. But working with the psychologist was a thumbs up. Recommend.
  • Melatonin works: At least for us! I know some people and children who do not do well on it, but for R it’s another great thing that helps.
  • Actively tube feeding: We ended the last wean in fall of 2016 and have not tried again. We wanted to see a significant trend of weight gain before attempting it. R has achieved a jump in her growth chart, and everyone is pretty happy about her weight these days! Another wean may begin this summer. She currently get’s 1-2 supplemental boluses a day.
  • Daily intake: The eating plan we tried changed nothing. River eats how she has always eaten. No matter the type of food, or way it’s presented. She cycles through highs and lows of eating spurts, a great day followed by a shitty one, again and again. River has self-chosen to be vegetarian/pescetarian. This does not help her eating volume increase. Since the rest of us are vegetarian it’s hard to tell her she can’t participate if she wants. We feed her a lot of fish and dairy to compensate. Bone broth has become one of her new supplements as well.
  • First Endoscopy and Nexium rx: Spring of 2017 R started showing signs of gastric pain, particularly centering around her g-tube site, and would complain if things bumped into her tube. GI ordered an endoscopy because he felt the pain was significant enough to warrant this procedure, especially if anything could help increase her consumption. The endoscopy was the first procedure R has had to go through in so long, that it was emotionally difficult for us, but R got through it like a champ and the team at Mary Bridge got her through it so smoothly she didn’t notice her IV going in. It went great (don’t expect as smooth a procedure on the next one)! The results were unexpected and a bit alarming. She has some kind of persistent gastritis. The rx was for Nexium 20mg daily. This does not help her eating volume increase. Info on gastritis. 
  • Feeding therapy: We returned to feeding therapy about October 2017. River’s gag reflex had started to present an issue with mealtimes, at such a consistent rate that I felt we needed a little help. We spent about 5 weeks working with a therapist and left with a bit more tone and ability to deal with difficult chewing and eating challenges. I felt it was well worth the once a week visit as it got R through this hump and nowadays when she starts chipmunking or gagging she has some more confidence on how to get through it with out totally losing it. This had no impact on her eating volume.
  • Physical therapy: We returned to physical therapy at the same time! Now it’s for toe walking. I know weird right?, but I watch both my kids tiptoe daily and I know it’s not good for their physiology and their future poor knees. I did it, I know. We’ve been at this now for nearly 4 months with some small signs of improvement.
  • Naturopathic: We started seeing a naturopathic doctor in the fall of 2017. We need answers and additional help, especially about her gastritis. Nexium was the ONLY solution that her other doctors have to give her for it. It gives us no reason as to what’s causing the inflammation (unless it’s the g-tube itself, which they can’t even rule out as a possibility). We start testing for food intolerances/allergies (IgG/IgA test) and the ND puts her on a supplement regiment for growth. Supplements like a multivitamin, calcium, magnesium, collagen, Carniclear, bone broth. River has been dx with the MTHFR gene mutation (as well as us parents). We are trying a supplement for that as well. Info on MTHFR mutation.
  • 2nd Endoscopy: In November 2017 they need to test for the gastritis again and see if the Nexium is improving her condition. The procedure doesn’t go as smoothy. This time the Versaid seems to give R an emotional reaction and she goes into crying fits. This happens until they knock her out for the 10 minute endoscopy. We try to take blood samples for the ND while she remains unconscious, directly following the procedure. This gets accomplished, but not well. Not well at all. R fights through her anesthetic and struggles against the nurses, and me. It bruised her arm all up. But we got the blood. And I pray to never have more endoscopies. Now we wait for test results.
  • Results: The gastritis has improved! The GI said it’s not gone completely but the fact the medication is helping her inflammation means it’s at least somewhat controllable so she is not faced with chronic gastritis. But it’s still means that it’s being caused by something. Nexium is just a bandaid. This does not help her eat more. 
  • The IgG test: Yes to some food intolerances. She’s positive for wheat/gluten, cane sugar, and eggs. Our next move via the ND is to take her off these foods for 3 weeks with an elimination diet. We reintroduce to test for reactions eventually, ultimately the goal is to hope by taking her off these inflammatory foods they will naturally decrease her gastritis. The GI doesn’t want to retest either. He thinks following the ND’s guidelines, we will all cross our fingers and hope to be able to take her off the Nexium, keep her away from the food baddies, and wait and see what happens. If she complains of similar pain in the future we will know we need to get her back on a Nexium-type protein pump inhibitor. IgG info.
  • Food challenge: We are currently in the stages of reintroduction. I’m compiling my findings, and so far they point to —> eggs do not cause any symptoms. Yay. Sugar seems to have some behavioral indicators. We haven’t completed our gluten tests yet. Not hopeful though. Because even if we fail to see out right symptoms from gluten, everyone is aware that things like gluten and sugar are inflammatory foods. Her reactions will tell us how much we can let her have “cheats” sometimes. But overall I’m going to have to keep these foods out of her diet. Only time will tell if this is enough to keep her off of a PPI drug.
  • Nourish Formula: When we started down this road with the naturopath, I decided to stop making any homemade formula in case it might be part of the problem and find another solution. We found Nourish online, and then we were able to get it through the insurance too! It’s been treating her great, she tolerates it well, and it has taken a load off of mama!

 

16 months, things happened, many life changes occurred, but still so much remains the same. We will just keeping loving, living, playing, laughing, learning, and probably tube feeding for a while longer. Do you know how to help her eat? Because I’d LOVE to hear it, really.

 

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