GFCF Diet Update

I started my daughter on the Gluten Free Casein Free diet in September. 1 week later my daughter got a mystery fever which she has plenty of times. As a precaution, we took her to the urgent care (it was a Sunday and her PCP was closed) since she has a long history of ear infections. The doctor ruled out an ear infection but wrote a standing prescription for amoxicillin just in case the fever does not go away. After 3 days, the fever was still there but things got worse. My daughter woke up with discharge all over her eyes. We decided that we will fill the prescription but after another 2 days, her already existing diarrhea became worse. How bad was it? She was in the toilet almost every 10 minutes and was complaining of stomach pains. After this, I took her to her PCP and told her what had transpired in the past week. She looked in her ears and sure enough confirmed a nasty double ear infection. She said that amoxicillin should have worked so she switched my daughter to cefdinir (perhaps the bacteria was resistant to amoxicillin?) The fevers went away but the stomach pains and diarrhea went from bad to worse on each passing day.

Alarmed, I went to the doctor’s yet again and told them that I think that she has some kind of GI distress and maybe her flora is messed up. The doctor tested her urine and ruled out any infections. So she recommended florastor, an OTC (Over the counter) probiotic. When she began to take it, she became more hyper and the stomach pains increased. I read online and some mothers on message boards stated that it would get worse before it gets better as the good bacteria overpowers the bad bacteria. I felt like removing her from the GFCF diet because right after we started it, we were having one issue after another and I was unsure if it really was benefiting her. My husband and I pushed on with the diet and probiotic.

3 days after the probiotic use paired with the diet, her stools became firm and normal looking. She was now pooping twice a day. My daughter and I went for her school trip to a local farm. I was nervous because the previous year my husband went and he had mentioned that my daughter would not sit still and had numerous meltdowns.

When we got to the farm, my daughter was very calm, followed orders and was engaged. Her eye contact was somewhat better and I was in shock. I came back home and spoke to my husband about what a peculiar day we had…I mean, she behaved!

Later that night, I expected her to grunt and fuss to let me know she wants me to snuggle with her in bed. However, she came close to me and said, “Come in to bed mommy”. Wait, it wasn’t echolalia but a spontaneous sentence. I almost fell off the floor in disbelief. I thought about that sentence all day….at first trying to talk myself out of believing that we could witness a change this soon. Perhaps I am crazy or reading too much into it? I decided to speak to my husband because he was present at the time my daughter uttered those words. He is very rational. He then confessed that he was thinking and playing that in his head all day as he tried to figure out what just happened. Alas! I was not crazy!

After this “come to Jesus” moment, we haven’t experienced a major breakthrough since then. Perhaps it is because we completed the dosage of florastor? I don’t know. I just believe that maybe at that point the stars aligned and her body was in some good balance biochemically. She behaved like an average 4 year old! My husband was always a naysayer when it came to biomedical treatment but now he is actually spearheading this whole treatment. He is reading and providing lots of suggestions. He said, “Whatever happened that day gives me hope that she will be ok”

So that is where I am at right now. I pray that I see more of this as we continue! We are just in the beginning, we have more to do i.e. visit a D.A.N doctor etc.

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