Posted By Posting
Jul 23, 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
Quinn's ENT appointment/ Surgery recommended :(
Quinn had an appointment with her ENT doctor. It was a very frustrating appointment. I hate it when you are waiting for hours to be seen. IT's just not fun. It seems to happen more often than not out here and I am getting pretty sick of it considering that she sees a specialist pretty much twice a month and sometimes four times in just one week. UGH!!!! Anyways, a lot of his decision was based solely on her history. He didn't even check her adenoids, but looked down her throat and said that she still has reflux! ?????? He said that it was a little bit red and it could be either from post nasal drip or reflux. But he thought it was from reflux since i never notice Q having a runny nose. Oh no! Not the reflux monster!!!! Anyway, he said that her tonsils are normal size but that her airway is quite small and so his recommendation was to do surgery: remove the tonsils and adenoids and do a bronch at the same time. I asked about the small airway and he thinks that by removing the tonsils and adenoids it will give her a better airway. He said that given her history, she would have to be inpatient after the surgery for at least 24 hours. Normally, this is an outpatient surgery, right? Ugh. Anyways. I'm actually not happy with that. I don't WANT Quinn to have a surgery. I would much rather her NOT have to go through something. What if this doesn't help??? my dad told me not to do it because he wants us to see the doctors in San Diego. Which could take forever to get into. I'm actually ok with her having oxygen for the time being but the doctor said that he would rather her be off the oxygen. he even said that it's not really a garunteed fix. I NEED a garunteed fix. I don't want her to undergo all that stuff to only be back to the same boat with the same questions and the same dumbfounded doctors. I'm through with this, really! I have a lot more feelings about this that I need to get out but I have to go right now. -Sarah
Jul 23, 2008
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!
My first thought is to definitely get a 2nd opinion. I wouldn't do surgery without one.
Jul 23, 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
Oh Sarah, I'm sorry it didn't go well. I would absolutely get a second opinion first! Some drs are very pro surgery b/c that is what they do. Sometimes it is hard to know who to listen to. Hugs!
Jul 24, 2008
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!
(((hugs))).....I second Melissa's thoughts, I'd get a second opinion. I think it's totally reasonable to do so, and if the oxygen seems to be helping for now I don't think it would hurt to wait a bit...go see the dr.s in the city and see what they think. I'm sorry it's not a more clear answer...I agree, it would have to be a pretty sure that the surgery would help for it to be worth it.
Jul 24, 2008
amber f
I would wait too. Trust your mommy instincts. You are always right.
Jul 24, 2008
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
I would get a second opinion as well. Because the O2 seems to be working, waiting for the appt in SD isn't going to harm her. However, no one knows her better than you and you've done such a great job with your decisions so trust your instincts.
Jul 24, 2008
Josh 12 yrs colic as a baby
Jenna 6 yrs dream baby
Jessica (6/11/07) Silent reflux dx at 3 weeks
Went off meds successfully at 3 mos
Went back on Prevacid 8 mg TID 1/3/08
I would have to say I agree with your dad about waiting to make a decision about the surgery til after you see the doc in San Diego. Esp since you are giving her O2 at night, she should be able to wait a bit longer even if it is needed. HUGS> Cristy
Jul 24, 2008
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 agree, 2nd opinion is a must. She has oxygen to get her through until she can see the dr. in San Diego. I think you'll feel better about the decision in the long run. Then if it doesn't help you can say, "well, two doctors thought it would work." Less Mommy guilt and better results for Drama Quinn.
Jul 24, 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.
i agree on the 2nd opinion. is she breathing well with the o2 in your opinion? how long to get into children's?
Check with your
doctor first!