Here's Raya's list of diagnoses:
*Failure to thrive (FTT) -she's outgrown this diagnosis thanks to the feeding tube
*Poor weight gain -she's outgrown this one too
*Torticollis (Congenital Left Torticollis)
*Plagiocephaly (Also congenital, not positional; corrected by DOC Band)
*Deep laryngeal penetration during swallow (i.e. failed swallow study)
There may be others that her doctors haven't shared with us and we're still looking for that "golden diagnosis" that will explain some of her other issues, like the chronic vomiting, which is currently our biggest challenge.
Raya's neurologist has now added to the list:
*Cerebral palsy (spastic diplegia, affects primarily the lower extremities)
*Sensory processing/integration dysfunction/disorder
Raya was evaluated by a world-renowned motility specialist at Nationwide Children's Hospital in Ohio, and it is his opinion that Raya's unexplained GI symptoms are probably being caused by her sensory processing disorder. It seems that her GI tract is extremely sensitive to "visceral sensations" and when she experiences things like nausea, excess gas, feeling full, etc., her body overreacts to those sensations. For a full explanation of our visit to Ohio, click here.
*suspected rice allergy and possible dairy allergy
*possible chromosomal defect, hopefully we'll find out more at our appointment with the geneticist at the end of the month.
*Duplication on 18th chromosome at 18p11.31 of unknown significance
*definite dairy intolerance and/or allergy (confirmed by trial of liquid milk, not by allergy test, but girlfriend DEFINITELY can't tolerate dairy products)
*Positive allergy tests confirmed allergies to: wheat, rice, dairy/milk, oats, peanuts, tree nuts, chicken, and shellfish.
*Anxiety, possible OCD, possible ADHD; anxiety & stress from moving in September & starting preschool in November wreaked havoc on her motility
INTELLECTUAL PROPERTY NOTICE
*ALL information on this website is the intellectual property of the blog/website owner! Unauthorized use is prohibited. If you see something you'd like to repost or share, please email me and ask first. This includes but is not limited to all text, information, and photos on the blog. Thank you!*