Posted By Posting
Oct 24, 2008
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
headed to the GI
Sorry guys for not being around. Life has been so crazy! We are headed to our first appt w/ the gi this morning. I am very excited and a little nervous. I hope they take us serious and can offer some advice. i probably won't update on her until sat or sun when we get home, but i will try to update my blog and facebook. Thoughts and prayers appreciated.
Oct 24, 2008
DS #1 (7/05) - Just ReDX'd Refluxer! Prevacid Solutab starting 4/8/09. Lots of food and environmental allergies. Autism, Sensory Processing Disorder, Speech Delays, Developmental Delays, Severe Muscle Tone Weakness.
DS #2 (1/08) ReDX'd refluxer. Milk and soy allergies with Soy Lecithin allergies. Oat milk drinker, Rice protein powder, DHA, and vitamins added for bulk and needed nutrition. Weak muscle tone, slightly developmentally delayed, SPD confirmed.
You have our prayers here. We are headed to the GI soon for DS's reflux, so I know that anticipation. Keep us posted when you can.
Oct 24, 2008
good thoughts!!!!!!
Oct 24, 2008
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
Hope it helps!
Oct 24, 2008
mom to 4 kids with probable
Mitochondrial Disease
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
Connective Tissue Disorder,
Visceral Hyperalgesia, and more
Many meds
Good Luck!
Oct 24, 2008
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including,,, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
wishing u the best.
Oct 24, 2008
Renee, mother to Nicholas, born 4/18/08 with silent reflux, moderate laryngomalacia, Sandifer's Syndrome& suspected MSPI. On Neocate, Simply Thick and Prevacid. Also mother to Nathan, born 12/06/06, who had mild reflux the first few months.
Hope the appointment goes well!!
Check with your
doctor first!