Allie's breath - seriously smells like poop most of the time. Dr. Brown suggested we take her to a dentist and if the dentist cannot figure anything out then he will perform a "breath hydrogen test". This test is used as a clinical medical diagnosis for people with IBS and common food intolerance's. The test is simple and non-invasive (the kind we like). Dr. Brown would perform this test for Allie to test for SIBO (Small Intestinal Bacterial Overgrowth).
Link between GI issues and Autism. Dr. Brown doesn't think Allie has autism, however he recommends we get a full "neuro developmental evaluation" for her. He said there is a slight possibility that she has Asperger's Syndrome but really he wants to have her tested basically to rule it out. Allie has no problems with socialization but there are some questioning behavior with her listening skills. I am currently in the process of arranging the referral to get her fully evaluated.
Our current plan for the next 3 months is to keep Allie gluten and corn free and work on plumping her up. She hasn't gained any weight in the past 2 months and Dr. Brown said we really need to focus on getting more calories into her. If being gluten and corn free for 3 months doesn't change anything in her eating, behavior or anything else, then he recommends we run a few tests. He said we could do one or more of the following tests: swallow study (which she has never had yet), gastric emptying test and or a reflux scan. If we have to do any testing, I would suggest the swallow study. Since this has never been done, we really don't know if anything is getting caught in Allie's throat as she eats. By watching her eat, she seems fine but Dr. Brown said that sometimes you wouldn't notice anything - she would just feel uncomfortable and then stop eating.
Dr. Brown reminded us that there isn't much more testing to do. He said that we have seen a large number of doctors and have pretty much done every test available and they have all come back with normal results. He reassured me that he's not giving up on her - which makes me happy! I of course asked him, "when do we stop searching for a diagnosis?". Of course he couldn't give me an answer but he did say that if we do end up running tests the end of April and everything comes back normal, maybe we take a break for 6 months and see if any new symptoms show up. If they do, then it would give us a bit more information as to what to look for. Of course my motherly instinct is saying not to take a break - we can figure out why Allie won't eat. Yet, I hate putting Allie through all this testing, it's obviously taking a toll on her (and me).
I have decided for right now, I'm not going to focus on a diagnosis. I'm going to focus on getting Allie all of the calories that she needs and in the meantime, we will keep her gluten and corn free. The whole "diagnosis" search is consuming me and driving me bonkers because I am the type of person that needs answers!!! For me, the unknown is always the worst - I just need to know how many turns are in the road ahead so I can plan and be organized. Unfortunately, God's plan is not that way with our little Allie and I have to accept it. I'm not quite at the "acceptance" stage yet but I'm getting there!
There were a thousand more things discussed during the appointment but I won't bore you with more details. Overall, Allie is doing wonderful. She has been vomit free for almost 2 weeks (knock on wood) - I think that is the longest time we have went without vomit (since she got her tube). Yeah Allie!!!
Here is a picture of Allie when she was about a month old. I love this picture because it looks like she's praying. Maybe she's praying for answers, okay I promised not to be obsessed with getting a diagnosis - I'll stop now!
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| Allie Rae at about a month old |
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