Welcome Friends!
Sophia A.
Birthdate - October 19, 2004
Main Diagnosis - ROHHAD SYNDROME(rapid on set obesity,Hypothalmic
isfunction, Hypoventilation and autonomic Disregulation
Biography
Sophia was born on October 19,2004 she was a healthy 9lb 6oz bundle
f joy. Sophia is the youngest of Six children. Sophia would be a happy child
nd enjoyed playing with her sister's and brother's. Right before Sophia's
econd birthday she was tiny only weighing 20lbs when she went for her 2 year
ell visit at her pediatrition Sophia had doubled in weight in a short amount of
ime. Sophia would also begin throughing up 4 to 8 times a day with no spacific
eason or time. Her pedatriction would send us into Childrens hospital for an
valuation with Dr. Rhodes and endrocrinologist who would try and find out what
as going on with Sophia. Well the first step would be MRI's they were thinking
hat Sophia may have a brain tumor which would be the cause of all the weight
ain and vomiting. While the MRI showed some Brain abnormalities it did not show
ny Mass. and were told that it may just be to small for them to see the tumor
t that time. So we would continue to visit
with the Dr. and Nutrition every 3 months for testing and evaluations. Sophia
ould start to have issues with constant thirst and wanting to drink all the
ime she would continue to gain weight and vomit daily. We would be addmitted
nto the hospital for evaluation to see what Sophia was actually taking in for
alories daily. There observation concluded that she was only taking in around
00 calories a day and there is no way she should be gaining so much weight on
he lack of nutrition she was keeping in. So we would continue with testing and
aving more issues. Sophia would have sever constipation, thirst, kidney refulx,
cid reflux, cronic pneumonia's and Asthma. We were becoming very frustrated
ith what was happening to Sophia and no answer's on why she was having these
ssues. We would finally recive a diagnosis 2 years after begining our journey.
will never forget that day December 15th, 2008 when Dr. Rhodes called and said
he finally has a diagnosis for her. I wo
uld listen to what she had to say and only heard ROHHAD Syndrome not knowing
nything about this disease never heard of it before she would go on to explain
hat it was and how rare it was and that it is a life threatning disease with no
reatment or cure for it. On December 26th we would be addmitted into the
ospital for a sleep study and would remain in the hospital for almost a month.
ophia had to have an emergency T.N.A do to her sever Obstructive sleep apnea
he would be monitored for low oxygen and be on a c-pap machine. We have a whole
eam of doctors for Sophia for every part of her little body. She also has a
octor just to coordinate the other doctors. Sophia continues to progress with
er diagnosis. she is currently on 11 medications a day to keep her going. Her
urrent issues are still weight gain,bladder incontinence,sever asthma,sleep
pnea,acid reflux,constipation,adrenal insufficiant,hypertention,resting
achacardia,insulin resistant,scoliosis,and seizures.
We attend weekly medical appoinments at childrens hospital and take things one
ay at a time. Our precious girl just celabrated her 6th birthday and we are
rateful for every day with her.
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