Posted By Posting
Nov 18, 2008
amber f
Weekly update post (everyone update here)
Hello everyone! We have been doing alright here. Nolan had a fever Sunday but after he took a four hour nap he was fine. The med wean is going okay. I ? it on a daily basis but the spitting up has gone down tons.

My dd cut some of her hair last night while I was at a meeting. There is never a dull moment here.

I hope you are all well and I can't wait to read your updates.

Nov 18, 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
Hi! Quinn is pretty much over that nasty virus she had and she decided to pass it along to everybody in my family. he he. *except me. I have an exceptionally good immune system*. She is talking up a storm. She peed and pooped in the potty all by herself last week. Everybody in the Sarah and Quinn household (so I guess that just means me and Quinn) are doing AWESOME!!! -Sarah
Nov 18, 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
No more ear infection and the respiratory stuff is starting to get better, other than the wheezing at night. We will be going back to see if her hr goes back to normal after finishing all of her antibiotic and stuff. Hopefully, that will be a non-issue when we go back after Thanksgiving.

We have heard from National Jewish and we will have to pay out of network fees so it is going to cost us close to $10,000 in medical bills alone, not to mention the travel and being off work. We are going to find it somehow. Not sure how but we are out of options here in Oklahoma.

I hope everyone else is doing well and I'm looking forward to hearing about everyone. -Amanda

Nov 18, 2008
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
After our hospital stay a couple weeks ago, Zack is doing MUCH better. We went on vacation and he loved it. He was only vomiting at something being in his mouth...they were not reflux related, they were oral aversion we have had a LOT less vomit...and luckily seeing no side effects from the Reglan. He has his Upper GI tomorrow...cross your fingers for us! He was also evaluated by the state for Early Intervention and scored well developmentally, but failed pretty miserably in the eating department...she is recommending feeding therapy for him. Poor kid!
Nov 18, 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.
Katie had been improving. It seems like her stomach is healing VERY slowly. Unfortunately she has bronchitis so it has flared everything up. Hopefully when she gets rid of that we will be back on track again.
Nov 18, 2008
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
joslyn is doing well still with her dosage lowered to 2x's a day. (Zantac). She slept last night without her Boppy Sleep Positioner! First time ever! We put an egg crate on top of her mattress and elevated the bassinet. (she is still using her bassinet part of the play pen.) She took full advantage of no positioner! She was moving all around and sighing every time! I thought she was waking up when she was making the sounds.... but it seems she was sighing out of happiness! hehe.

Congrats to Quinn!!!!!

Sorry about the "free" haircut!!

Amanda... Bless you! I hope you can come up with the money some how.That is alot of $$$.....


Nov 18, 2008
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
Not too much to update on here. Allie's cutting a few teeth, but has been relatively happy (her teeth come in so slowly) We're gearing up for the 12 hour drive to Chicago to see the in-laws (sigh) We'll be leaving Saturday night and hoping Allie sleeps most of the way. Still on the Pepcid and Prevacid with another wean-down trial next month, but doing pretty well overall with reflux for the moment.

OT - the dog is doing much better with no mucho bloody vomit or diarrhea for over a week now with the carafate. Now to schedule the carpet cleaners, as my green machine and steam cleaner aren't doing much to get rid of the bloodstains. Hope all is well with everyone!

Nov 18, 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.
We're not doing so hot here...Jazzy seems to be always in pain. Don't know if it's reflux related or EC related. I'll be posting a longer post later about what's going on, but she's still not in a good place yet.....Wish I had better news...
Nov 18, 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.
We are doing pretty well here. Crabby FIL left yesterday, and we are still trying to emotionally recover, but by tomorrow I think any hurt feelings will be healed, until he arrives again.

Ethan is super busy, scooting everywhere. He used to at least be still for bath time, but that changed yesterday, as he took full advantage of all space in his baby bathtub (not much, but you'd be surprised at the predicaments he foudn himself in) lol. He seems to be having some reflux issues today, but is not cranky, so I guess meds are working just fine. I'm still guessing that he is teething, though I'm not seeing the red gums or anything, just tons more chewing of hands and other objects.

I'm sorry to hear that Jazzy isn't doing very well. Hopefully things will get better soon.

I'm glad to hear everyone else is doing well.

Amanda, have you looked into Kansas City, Children's Mercy Hospital? I'm not sure how they compare with national Jewish, or anything in Oklahoma. I felt like we had a good GI visit, even though he wasn't concerned with Ethan's situation, he listened, took notes, made suggestions, explained thoroughly, etc. Not sure about other specialties there, but they have a good reputation in the area. Maybe they are in network? At any rate, hopefully the money will become available.

Nov 18, 2008
seamus mama
Seamus was diagnosed with Silent Reflux at 3 weeks. Now he is 14 months, on Prilosec and avoiding dairy,soy,egg. Still nursing. A lot !!!
Its been nice seeing everyone's updates, although I wish they were all good news! Seamus has ahd a rough few weeks. He is getting his third molar in a row right now, while battling some yucky cold..I introduced goat yogurt right before the molar emerged..He has been howling in pain at night, demanding a lot of milk. He wakes up SCREAMING and I have been holding him all night long.He is a bit cranky during the day, but not showing any reflux. I stopped the goat yogurt and started the tylenol. We'll see. We've had beautiful beach weather so our days have been quite special and fun filled.
Nov 18, 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
Rory is doing GREAT! She is completely off the bottle for about a week now, drinking only chocolate milk from her 1 or 2 sippies a day. She just won't drink plain milk. I feel bad about the chocolate issue, but as a recovering mommy of a non-eater, I'm letting it slide. Rory is eating huge meals. For breakfast she eats a bowl of cereal, 1/2 banana, 1/2 buttery toast and 1/2 cup of yogurt!!! ALL OF IT!!! She even knows how to ask for seconds! She is peeing on the potty at home, but not at daycare. She goess #2 in her diaper still, politely announcing, "I pooped" when she needs to be changed, lol. She woke up this morning and her eyes were caked completely shut! And I think I know why. I brought a clean blanket to daycare yesterday and told them to replace it with her old one because she had been using it at daycare when she got the pinkeye. She told me to set it on her cubby, which I did. When I went back after work, the blanket was still sitting there!!! I was like, ummm, why didn't you give her the clean blanket, and she said, "oh, it gets so hectic around here". So this morning, I was like, FINE, you are SO going to daycare today!!!! I washed her up and they didn't call me, so I'm guessing she is fine during the day? I know it's horrible for me to send her, but we are in a BAD way financially...I have to work before she gets sick again. Anyway, I really hope things start to look up for everyone. I hate seeing all the little ones struggling :( HUGS
Nov 18, 2008
I have 3 boys, youngest has gerd, 18 months of no sleep. Prevacid 2x/7.5 mg thinking of switching to prilosec.
Today we all went swimming. Davids first time. He & I in our fancy wet suits. The big D's did lessons. Then David fell asleep at 4:30pm. He has woken up once but would not get up. Nursed back down. Ugh! Is it going to be a 2am all awake, let's play night? Hubby gone on business, ugh.
Check with your
doctor first!