Posted By Posting
Nov 12, 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
Cooper update: some good, some bad
Sorry ladies. I haven't had a moment to post lately, but I do read when I can and think of you all daily. Today was Cooper's last day of meds before going off for the EGD and pH impedance probe. Since dropping his prevacid a couple of weeks ago, his reflux has been flared up, even though we have been back on the old higher dose for well over a week now. His breathing has been worrisome for three days now so I decided to take him to the pedi today. His stridor is a lot worse than usual and he has been doing what I would call a wheeze. (I will try to get it on video so yall can hear it). Of course he did not do it while we were at the drs office. He does not have any symptoms of a cold (no runny nose, coughing, ears, ect), but he did have a red throat. They checked for strep, but it was negative, so the dr said it could be a virus, but was likely the reflux. His eating yesterday evening and today has concerned me as well. Last night he would chew his crackers and other snacks, but couldn't seem to swallow them. He choked on perky os and gagged himself to get them up and then would bite his cracker and then tongue thrust the pieces out. And today, he only had about 2 oz of applesauce, which is very unlike him, he usually has about 18oz of baby food a day. I am dreading going med free tomorrow. He can have carafate though, so hopefully that will help.

As far as the good, he is doing great developmentally. He can go from sitting to standing like nobody's business and is trying to take a few steps. He is also "talking " up a storm. He has a multitude of words these days. I think all of the little ones around him have helped with that. He also started pretend talking on the phone this week. It is funny. I will try to get a video of that so yall can see. I am just worried being off prevacid for a week will really set him back.

Please be praying for us. I am more worried about this week than I am the tests themselves. He's such a fighter though. I can't help but be scared of apnea, hyponea, and ALTEs. I will likely sleep with him. He will be off longer than he was old when he was put on them. I think he was either 4 or 5 days when we started the reflux meds and he has only missed a couple of days total since. I'm sure I'll be on a lot over the next week. Thanks for listening!
Nov 12, 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.
I have been thinking about you. So sorry it has been rough. I hope the tests are over soon and give some def answers!!! Have you tried cold things for him to eat-popsicles stuff like that? Jennifer
Nov 12, 2008
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
I was also going to suggest smoothies/slushie. This seemed to help jazzy during horrible flare ups.....Good luck!
Nov 13, 2008
(Maria)Mommy of 2 beautiful boys
Raymond(3) Severe Trachialmalasia, very mild Cerebral Palsy, and Reflux. Currently only unsing neb and doing well w/o Prevacid!
William(2) Reflux, MSPI, severe food/seasonal/environmental allergies. Currently on Prevacid, Zyrtec, and very limited diet.
Picture:William just turned 2!
Will 2yr old
You mentioned the doctor thought his throat looked red. Maybe its hurting him and he doesn't want to swallow. :o( Poor little guy. I'm with the other ladies, try something cold. Maybe avoid the sharp things like crackers. ((hugs)) Hoping all goes well!
Nov 13, 2008
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
Hopefully the carafate will get him through. THanks goodness he can take that. Hang in there this week, it will be worth it to get the tests done.

Maybe try liquid calories this week if he is having trouble with the solids.

Nov 13, 2008
amber f
I've been thinking of you too. The pretend talking on the phone is so cute. Nolan does that with any toy. He puts it up to his ear and talks away. I hope that he does well on no meds. Feel free to come back here and vent or get the support you need to face this week ahead. I will be thinking of you and good luck with the test:) (((HUGS)))
Nov 13, 2008
ethan's mom
Mom to Ethan, born 4/23/08. Diagnosed with Reflux at about 1 month, started medicating with Zantac, which wasn't helpful for us. At about 2.5 months, we started on Prevacid, twice a day, and that is working much better.
Ethan is breastfed and has a few solids that he is enjoying very much.
Good luck with the tests. I hope and pray that he is okay without the meds for the time he has to be off them. Way to go on his development!
Nov 13, 2008
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
I just wanted to wish you luck this week! We're here for you. It must be scary taking him off meds. Hopefully, he will do great and you will get some useful info from the tests. Rory used to tongue thrust crackers (well, mostly everything) but crackers were the worst. It could be a texture thing and/or him having a sore throat. lol, my jaw hit the floor when I read he was eating 18 oz of baby food!!! Holy smokes, that's great!! I'd say he must not be feeling too hot to go down to 2 oz. Anyway, hon, good to hear from you. Please keep us updated on our little Coop!!
Nov 14, 2008
Praying for him to be as pain free as possible while off medicine. Praying for the test and a positive result. Hope the Carafate brings him relief. Thinking of you and will be praying for the test. Carla
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