Areli Rose's Disease: Doctors and Crying and Pokes, Oh My!

The next weeks turned into a blur of crying, doctors appointments and blood work. Areli would soon start to CRY, a lot. The doctors said she may feel abdominal discomfort, so we think that's why she would cry.

Feel free to stop this at any time.

She would SCREAM out for hours everyday and just stare into my eyes as if she was begging me for help, just heart breaking, not to mention exhausting.

Areli also started to throw up (no not spit up), but projectile throw up randomly. Not everyday, not even every other day or sometimes multiple times a day. It would come out of the blue, would be just normal looking milk, then she would go about like nothing happened.

Since the hospital we have been at the doctor twice a week. One to Dr. K for clinical evaluations/results and then to the hospital for blood work. (This baby has been poked so many times she barely flinches anymore).

To summarize her blood tests and results, she tested negative for every disease or symptom shocker, but her bilirubin had gone down to almost normal small victory! but her liver enzymes were still very abnormal and getting worse (which are the ones that will cause cirrhosis) bummer. We were allowed to go back to breastfeeding hooray!, she continued to test negative for any diagnosis again, shocker, and her liver enzymes stayed consistently high and abnormal double bummer. Her bilirubin went back up shit, she tested again negative for anything ok this is getting old, and her liver enzymes stayed consistently elevated ____ insert bad word here. We concluded that this was not a problem because of an outside factor. Nothing that happened during pregnancy, nothing she could have contracted, so we went to the Metabolic and Genetic Specialists at Children's Hospital. We were ~~fairly~~ very certain this was a genetic condition and they would have an answer. One doctor appointment and $5,000 worth of blood work later all they could tell us was she had liver disease, but none they know of...

Her skin color when bilirubin is high

We continued "supportive care"- blood work to watch her liver function and bilirubin and visit Dr. K every other week for clinical evaluations.

At this point everyone knows she is not any normal case of liver disease, so I started to take things into my own hands and I would spend hours online researching rare disorders or hours going over her levels (because her bilirubin would fluctuate so there must be a factor influencing that). The only outside factor to her bilirubin was diet. She was on no medicines or supplements so MY diet had to be the culprit (or at least the culprit's sidekick). So I have been dairy free, gluten free, and vegetarian, except for fish. I am VERY happy to say since, her bilirubin has remained on the lower side- not quite normal AND the crying has decreased, a lot. Her liver enzymes are still very abnormal and she is no where near being cured of this disease, but if this diet helps her discomfort I consider that a VICTORY!