I spoke back and forth with our GI Specialists nurse several times yesterday. Annabelle's issues with waking during the night are not settling well with me and I want resolution to that. We concluded that while she does cough sparatically during the day, it's the worst / most severe at night when it happens. Dr. Konikoff believes that it may be a delay in her stomach emptying that is causing her reflux, and the formula in her full belly to move around and choke her while she is laying down. When he mentioned this possibility, it rang a bell in my mind that these were some of the issues Annabelle was having both in the NICU and during her first several months. When she was in the hospital, I would feed her a full feeding but when I checked the residual from her tummy thru her NG Tube, the contents was all still there.. her food wasn't moving or digesting. We battled this for quite a while during her NICU stay and modified her feedings accordingly after she was home.
Dr. Konikoff is recommending another medication that will be given 4x a day, once before each feeding and a final dose before bed. We will rearrange her feeding schedule a bit to ensure she isn't going to sleep with a recently filled tummy. This new medication will empty her stomach faster so the potential to choke on whatever isn't digested yet, isn't an issue. I don't know how I feel about this. Annabelle never slept well during the night until we began EoE treatment, she always woke around 2a crying, I believe because her tummy was empty and it hurt. If this new medication empties her stomach even faster, and she's also on a medication that boosts her appetite - won't she be starving 99% of the time? It just doesn't sound right.
Dr. Konikoff is trying to avoid me having to make another visit all the way in Norfolk, and while I appreciate his concern, I would rather get to the bottom of what's going on instead of just adding another darn drug to my childs already overloaded plate. I hate giving her so many medications, hate hate HATE it!
Our doctor is smart though, he's the best at what he does and I do trust him. I will give the new medication a shot and the nurse should call us at the end of the week for an update. If it isn't working, we don't have to continue.. but I will try.
Annabelle is having a really great last couple days, beside this one issue. She is full of herself and I am really starting to hear her try to talk a lot more. I even had a dream last night that she said "I like that", I woke up so proud but then remembered it was just a dream. She doesn't even put two words together at a time, let alone a statement or three! But I do believe she is making huge strides forward in her speech and I am very proud :) She is communicating much better. For example, the other night she was hungry and she marched her chunky legs to our bedroom to retrieve AK, held his hand and steered him all the way to the kitchen and pointed to her cups. It's things like this, although she didn't mumble the first word, she still communicated to us what she needed, and for that I am utterly grateful. It makes like 10x easier! She is starting to sound things out and address toys/people by there name. When AK and Mady get home, she screams at the door, "Sishhyy!" Occassionally she will walk up to me and say "mama" and she always calls for Lambie, "Namie!" by name when she is looking for him. She knows the words, "Shoes. Socks. Bye bye. Please. Go." and she's trying hard to say "Thank you. Doggie. Love you." We're taking it all in baby steps, but I really feel as though were on the edge of a breakthru :) At least, here's to me wishfully thinking / hoping.
Another side note - update. Annabelle did wake up this morning a bit fussy and clingy. When I picked her up to leave the house, she felt really warm to me. The poor kiddo is cutting so many teeth, I know she is miserable. I gave her some ibuprofen and hopefully that gives her some relief. I did tell the sitter that if she spikes, or really starts to run a fever, that I need to know about it. You see, the thing about this disease is that it isn't the EGID itself that is fatal - it's the auto-immune part that is so dangerous to these children. Their bodies are spending so much time fighting irrational things like chicken, that when pneumonia hits their system, their immune system doesn't respond or fight the way it should. If/when Annabelle gets sick, it needs to be taken seriously and handled appropriately and as fast as possible. Thus the reason we will not food trial over the winter seasons. It's too dangerous to risk a failed food trial when she is walking into flu season, we can't jeopardize her immune system over apples when she needs to be rested and healthy enough to fight anything she comes into contact with during the winter.
All that said, I am confident this mild fever this morning is nothing more than cutting new teeth and molars, I hope Annabelle gets plenty rest today after her 9am Speech Therapy session, she will probably need it after her cranky attitude at 630am.
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