Since Miss Grace was diagnosed with EoE in March she has been on a lot of steroids. We got her reflux under control thanks to a medicine change, but she was still on a lot of steroids. She was eating better in feeding therapy and we were please with everything but the fact that she couldn't rest and calm. Steroids make me crazy jittery just for 7-10 days much less taking multiple steroids long term. Cincinnati Children's Hospital and the endocrinology department is doing a study on children with EoE who have been treated with budesonide slurry for at least six months to see what effects long-term corticosteroid use has on the adrenal glands. There are still so many unknowns about long term steroid use in children and with everything else Grace has going on I do worry about that. After her scope was good in June I pushed to wean off steroids and work on controlling disease with diet. First we eliminated one steroid at a time and then cut the dose of the budesonide slurry in half. When we did that a lot of her symptoms reemerged. I tried to ignore them because let's be honest, she is a much more pleasant child without all the steroids. But she started not to eat well again. Last week her feeding therapist commented about it and I tried to write it off as a bad session - after all we all have off days. But it has continued and more symptoms are reappearing; she is not sleeping well, complaining of joint paint, unable to swallow bites after 60-90 seconds of chewing and more. Then on Monday her OT and PT both commented that she has developed hand tremors when doing fine motor activities (writing, threading beads, stacking blocks). Was this a result of steroid weaning or because of her CP or something entirely new? Feeding is always our last therapy of the day and after reviewing our volumes intake logs and having another difficult session our ST/feeding therapist said we needed to contact the doctor. We had an appointment already scheduled for today so she went ahead and called with her concerns about Grace. I knew in my Mama heart that it wasn't going to be good news. I have felt like a short order cook jumping through hoops and fixing anything that she even asked for, but she isn't eating. She says she is hungry, you fix her food and she doesn't eat. She has recovered her weight loss from this spring but overall she has only gained 1 ounce since January - that is 7 months.
So we woke up this morning and I posted on facebook that I could use some prayers as I was really anxious myself. Our appointment was not until 12:30pm so when I got an email about a Home Depot project build at our local library we decided to head that way for some free fun!
Loving on Cowpoke - she thinks he hung the moon
All the hammering of the Home Depot projects got to be a little much for my sensory girl. She went to do a puzzle with Daddy. He ended up doing the puzzle and she snuggled Gator Dog.
Do you want to build a project?
Afterwards we headed home for an early lunch and then headed to north Dallas. Our GI came in and talked with us. He had already talked to our feeding therapist earlier in the week. He asked us a lot of questions and told us that it is suspicious and looks like she is flaring (having an allergic reaction) to something still in her diet. She is off of all dairy, soy, wheat, eggs, peanuts, tree nuts, fish, shellfish, beef and coconut. Her diet is so restricted already we don't know what else could be triggering her. She has had no new foods introduced in her diet. He said he needed to look inside of her ASAP and see what is going on. So on Monday at 7:30am she will be scoped and biopsied again to see what is going on. If her eosinophil levels are back up and her disease is progressing then we will go back on all of the steroids and we will wait 90 more days to let her body heal before going inpatient. If her eosinophil levels are low we will know that this is behavioral (she is afraid to eat as she associates eating table foods with pain) and we will go back inpatient in September for 4-6 weeks in the feeding program at Baylor Dallas so we can up her food intake volume and wean back down off of her medical formula (the only food she associates as being safe).
Waiting at the GI's office
So for now we try and ride through the weekend and wait it out for Monday. As always the biopsy results take 5-7 days to return but with severe EoE he will be able to see immediately if there is furrowing, inflammation and irritation. We are going to watch the hand tremors and keep the neurologist advised. We go back and see him in 6 weeks and by that point we should have regained control of the EoE. So pray for a calm weekend and pray for a smooth procedure on Monday. She does great with the procedure but she is a bear with anesthesia. We don't do vercid anymore, we carry her to the OR and hold her down while they gas her. That is hard on her and on my and 827. Please pray for a smooth process. No matter the results we will continue to fight and advocate for Miss Grace. I keep reminding myself God loves her more than we do and she is just on loan from him. She is an overcomer and has survived more in 4 years than many of us face in a lifetime. Thank you for praying for my girl.
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