Posted By Posting
Aug 20, 2008
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
We're back
Sorry to be so out of touch. I think it has been most of the summer. I hope this post finds everyone well. I haven't had the time to catch up with everyone yet.

Adriane is doing so well. She is gaining some weight and we are trying to go off all meds. We are still taking allergy meds and breathing treatments but those are probably going to be lifetime stuff. The stress has started again because of school starting back. She has been at the babysitters for two weeks and we had a horrible reaction to something yesterday. Thought we were going to have to use the epi.

We had a scope and another PH probe done in early June. The doc said that her esophagus looks great. No lesions or anything. He did say that her reflux is getting better and we are slowly weaning off the meds if we avoid trigger foods. The stomach was really mucosy or something and she has adema in the intestines but he said that is probably from all the food intolerances and such. Anyone have any insights on that stuff.

She has been seizure free for 2 months w/o meds. Started chiropractic care around then and she is doing so much better.

Aug 20, 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
That is really great news. Cooper started seeing a chiro and is doing so much better since then too. I am such a believer in that now. Good to hear from you.
Aug 20, 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
Wow! that's great news. I'm so glad to hear that she is getting better. I hope that things continue to go uphill. -Sarah
Aug 20, 2008
BRANDON-Zantac and Bethanacol; Neocate formula, 2 sets of ear tubes, Adnoids removed, Vasomotor Rhinits, Asthma. Currently on: Xyzal, Omnaris, Flovent and Xopenex,
AUBREY-Zegerid 2x a day, Soy Milk, Tubes put in and adnoids removed (11-7), Hypotonia, ECI therapy for low muscle tone throughout trunk and hips, oral motor issues and sensory integration issues, delayed speech, Teething, probiotics
PICTURE: Aubrey in her cute cat outfit. If you look you can see how her right foot turns in. She walks that way as well. It is not as exaggerated in the morning's but gets worse in the evenings. This was after her nap.
Great news! Good to hear from you!
Aug 20, 2008
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
great news. good to hear from you.
Check with your
doctor first!