Posted By Posting
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
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Could it just be coincidence?
We went to PT for the first time today since Q got her oxygen on. I knew it was happening, but was too afraid to admit it for fear that it was, simply, just a coincidence. Quinn's motor planning has gotten far better, her strength, tone and endurance is outstanding and her mind appears to be much clearer. The PT was showing her off to the entire building. She was doing things that were impossible for her not too long ago and this was the first session without her leg brace on and she only fell a couple of times! There's so much more I could say about it, but it's all too unreal right now. The PT strongly believes that it is the extra help she is getting that is making all the difference in the world and she told me that I was so right about it. She said that everything with Quinn so far, i have been completely right about. Everybody keeps telling me that. She isn't even having as much diarrhea. that right there just blows my mind!!! could it really be the fact that she is getting oxygen at night? Could it truly be helping her so, so much? Am I thinking this a little too prematurely? I'm so scared to admit it for fear that I am wrong and that this is just a smooth patch for us right now. it's too good to be true. -Sarah
Jul 22, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
I think you need to read Katie's mommy's post about jinxes!

No, seriously...that is great news! I bet it IS the oxygen. I mean, the boy heals at night during sleep...and if her body is getting oxygenit needs, it makes complete sense to me (the non-doctor) that she would improve in many ways! I'm so happy for you!
Jul 22, 2008
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
Oh Sarah, read my post about my stupid husband before you go posting great news! :) Congrats though, that is truly great news!
Jul 22, 2008
eswrede
Mathias Johann - 12/14/05 - GERD, Hypotonia, Sensory Processing Disorder, Dyspraxia; Stopped silently aspirating at 20 months :)
First partial seizure on 7/2; First Endoscopy on 7/16; results: bile reflux gastritis.
New Meds: Zegerid & Carafate
Allergic to dairy
That's awesome!!! I hope she can feel the changes too.
Jul 22, 2008
slimfast13
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!
*crossing fingers* that all just continues to improve for you - you two have had quite the journey

Don't you just love vindication?!?!

Jul 22, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
Sarah, I doubt it's a coincidence...you've been right on about everything...I'll bet it IS the oxygen that is helping. Her body isn't having to work as hard at night to stay oxygenated and she's finally getting some rest! Great job (as usual)!!
Jul 22, 2008
mollybeth
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 the o2 continues to help and is life changing. It makes sense that it could be. Heaven knows you guys deserve a break. Love the new pic. Two lovely ladies!
Jul 22, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!
Yea! Oh Sarah, that's wonderful news. I bet it's related...think how hard it is to function on very little sleep, and how much better you feel and function when you're rested! How exciting. Is she doing better with her sensory issues too? I would bet that that's going to improve also...if she's finally getting real sleep I bet she'll be better able to process things too.
Jul 23, 2008
elysabethsmom
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
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Well, you know people pay big money to go in hyperbaric chambers, oxygen has healing properties :) Great news!
Jul 23, 2008
ceramom
Sarah
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.
Whatever it is, GO Q!
Jul 23, 2008
kubicki5
yay for Quinn!!!
Jul 23, 2008
amber f
That is so exciting. Go Quinn:)
Jul 23, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
I say--just roll with it, lol.
Jul 23, 2008
kmom
Worry Wart mom to
27 mo. reformed "happy spitter"
34.8lbs , 37in tall(oct)
Diagnosed A/R at 6 wks
Zantac until 1yr then Prevacid
Med free since February 08
peanut & egg allergies...still
Zoo Boo Trick-or-Treating (pic).
I am a freak and I read all kinds of things about child rearing. One of the books stressed the importance of getting enough sleep and GOOD SLEEP. It said that if your child has apena, get it treated ASAP because this is very detrimental to brain development. Brain development is important to every other kind of development. SO, I totally believe you and I think you are right......again! ~Ronya
Check with your
doctor first!