Posted By Posting
Jul 21, 2008
Liz, mom to Donnie 12/2005
Surgery for Pyloric Stenosis at 5 weeks old
GERD since 4 weeks old
Colic until 13 weeks old
Delayed Gastric Emptying
Surgery for Tubes and Adenoidectomy at 14 months old
Anemic since 9 month check
Febrile Seizures
Speech Therapy
MEDS: Zyrtec, Nasonex, Xopenex,
Vitamins with iron, and back on Prevacid as of 12/2008
Our neurology appt.
Donnie had his neurology appt. today. It went okay, the neurologist wasn't the friendliest but he was very thorough. We had to travel 2 hours into New Orleans so that was very scary for us (didn't know where we were going and not used to big cities!!!). The doctor was taking down his past medical history and I mentioned reflux since he was at one time on 5 meds for it includding Reglan, but he wasn't interested in that. He said "well he doesn't look like he has it now" despite that he spit up two days in a row last week once being on me. Anyway, he took down that he has been having the eye twitching with head jerking and immediately wants to rule out seizures since he has a history of febrile seizures. He has scheduled Donnie for an EEG on Thursday morning and he is even going to be present for it and read it while we are there and give us a report of it before we even leave!!!! If the EEG comes back normal and he is cleared neurologically then he wants to watch it for a few months and see if it goes away.
Jul 22, 2008
mom to Mila 2-20-2007
and Robby 4-22-2004
Mila is on Peptamen JR 30 cal by NG tube. Open Heart Surgery 2/08/08. Captopril, Zantac, Losec, Lasix.
I hope the EEG is normal! How awsome to get results right away!!! Thanks for the update!
Jul 22, 2008
amber f
I'll be thinking of you. Good Luck and update when you can. How can you dx reflux by taking a look at the kid?
Jul 22, 2008
Mom (Danie) to Adam (9-4-03) & Nate (3-7-07) Nate was diagnosed with silent AR at 2 months old. He was on neocate, prevacid 30mg per day and couldn't start solids till he was almost 8 months old. He started cow's milk at 14 months and is currently off all meds!! So far so good :) PIC: Disney trip 2008. Nate didn't know Piglet was there, he didn't like the characters too much.
That will be so nice to get the results fast. Thanks for the update...I have been thinking about you guys!!
Jul 22, 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
I hope it is all normal. Wow, that is amazing he will be there and you will get the results right away!
Jul 22, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
It's great that he didn't dismiss you completely. If you can, from now until the EEG, try to get the twitching and stuff on tape. It always makes a lasting impression when you have something to show them so that way if the EEG comes out normal, he still has proof that something is going on. -Sarah
Check with your
doctor first!