A late start and a flat tire in the middle of nowhere at midnight didnt keep us from arriving to St. Jude! I did miss her 210 minute long psych appointment yesterday. I believe her clinic thinks I planned that (I make it well known that I think those appointments are ridiculous, and pointless!). As for today: To start, no child should know who Rick Ross is. Still, it was nice of him to make an appearance and to give some of the parents a break from routine. Some of the parents were a little too excited! Dahlia has been to dental, eye, and neurology clinic appointments today. No cavities were noted. Her eye situation seems to be the same (they estimate 20/50 & 20/80... atrophy of both optic nerves, astigmatism and far-sighted in both eyes). I advised the neurologist I would be weaning her off Keppra against his recommendation. He stated that it really isnt a science and theres no way to know if she actually needs it. So while theyre opinion is that keeping her on it is erring on the side of caution, mine is the opposite. He ordered another EEG for tomorrow (I doubt she will sit still for long enough to actually complete it, though). In the early morning she has blood work, clinic, sedation, and her MRI. The next major issue is going to be with her endocrinologist, who made us wait while she researched cannabis at our last appointment, and seemed determined that THC be closely examined as the cause of Dahlias possible early onset of puberty or a hormone imbalance. I wrote the clinic the following email to try to offset any further confusion: Im glad she was proud of having discovered this among the research, as I too have seen studies on this; however, this is not the root cause of this issue. If she doesnt come off of it, we will be left without a proper cause being addressed. I explained that it should be charted while inpatient this was a concern for which she showed symptoms prior to starting even just hemp oil (with only trace amounts of THC, could not possibly cause these symptoms). This was an issue prior to any supplements being given; but this doctor seemed pretty excited that her research showed this could be a result of THC. If Dahlias primary doctor, or anyone else for that matter, could explain to this woman who I am one hundred percent positive already knows this: symptoms of precocious pseudopuberty are commonly caused by hypothalamic tumors, brain tumors in general, hydrocephalus, and can also be caused by Keppra (while supposedly occurring in only 1% of patients (100% female), it is STILL a more likely cause than THC- especially since she had these symptoms before starting any supplements!). Maybe if shes reminded of the common causes, diagnoses, and medications that commonly cause this, all of which Dahlia has been subjected to, I think it might help ensure that I dont lose my mind, again, at her upcoming endocrinology appointment. In these pictures, Dahlia is adamant that the only toys she wants are the ones in the locked cabinets... so shes gone to the check-in desk to demand the key! Happy Thursday!
Posted on: Thu, 14 Aug 2014 20:29:03 +0000
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