Posted By Posting
Sep 18, 2006
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
Photobucket
When Does Surgery Become An Option?
Iv'e been posting in the discussion "Oral aversion-G tube? Nissen? Therapy?" And talking with Jennifer and corrigan300 about the surgery. Quinn was born full term and diagnosed with reflux in the NICU at about one month of age. It's been horrible. First it was the pain. That was the worst part... we are maxed out on prevacid and reglan and the pain is coming back. She is on Nutramigen formula... because she didn't like the taste of NeoCate Infant. She is refusing her solids now. She is eight months old and is now in the 9th percentile for weight. She just lost a precious pound. Our pedi just ordered another Upper GI and Barrium Swallow study and a speech therapist will be there too to see if the reason she is not eating is a behavioral thing. She told me that if all of Quinn's problems are due to reflux, then this is the worst reflux she has ever seen. We are all out of oral treatment options and our pedi says that if she doesn't start puting on weight, a surgery is our only other option. Another thing... I think she's having side effects from the Reglan. She is twitching a whole lot and she will drop whatever she is doing to do it. At first we thought it was just a thing she was doing, and now she just stops and does it, She closes her eyes tight as can be, and straigtens out her arms and scrunches up her face like she bit into a sour lemon. And then her eyes roll. we know it's strange. I feel comfortable with just watching it for right now, but if it starts happening more often, then our pedi will order an EEG. i don't think they are seizures. They are more like twitches. What do you guys think about that? And the surgery... when does it become an option? When do you know it's the right thing to do? -Sarah
Sep 21, 2006
sknmom
Mom to a teenage son with severe GERD, multiple fundos, and reconstruction of esophagus and stomach
I'm so sorry to hear that your baby is struggling. I have to say though that surgery for reflux (fundoplication surgery) should be an absolute last resort to be used when everything else fails and the complications due to reflux are lifethreatening. Fundoplication surgery can come with its own set of problems and you have to be willing to trade one set of problems for another. If Quinn isn't seeing a pediatric GI, I would talk to your pediatrician about a referral to GI. They are the experts at treating GERD and can be very helpful. In our situation, though my son had severe reflux beginning at birth, he didn't have a fundoplication until he was just about 4 years old when his respiratory problems weren't improving and his esophagitis had started to show signs of precancerous cells (Barretts esophagus).
Oct 09, 2006
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
Photobucket
Quinn is seeing a GI doctor. And unfortunately so is every other kid in the state of Texas. It's taking us forever to get in there. Her next appointment is in December for it and that's a referral ordered STAT! We are trying to make this surgery a last resort too. Our pedi seems to think Quinn would benefit from it. I just hate to see other problems develop due to reflux. She just had a barium swallow done and we found out that she is refluxing into her nasal cavity... causing sinus infections and a constant boogery runny stuffy nose... also her tounge coordination and eating habits are horrible and she is in serious need for speech therapy... and she has a very weak pallet and for that we are seeing a surgeon to find out if she needs reconstructive surgery. Luckily, she is not aspirating, but with the weak pallet, aspiration can occur at any time. Her food stays in her throat for a long time and comes back up as she eats. She has been coughing and gagging more and more. At this time we are playing a wait and see game. She has an Upper GI scheduled for the 17th of this month and I'm hoping that doesn't show any abnomalities... but we all know the danger in getting your hopes up. Her weight gain has been horrible. How is you son doing now? -Sarah
Oct 15, 2006
sknmom
Mom to a teenage son with severe GERD, multiple fundos, and reconstruction of esophagus and stomach
Aspiration is definitely a scary thing. Unfortunately, that has been one of the biggest things Spencer has had to deal with. He has chronic lung disease and has had frequent pneumonias due to aspiration. Is Quinn taking any prokinetic meds like Reglan or Erythromcyin? I hope that the GI appointment gets here quickly and that things are improving for her. Spencer is on a lot of medication and is extremely thin but has been doing OK on a combination of medications. He currently has aspiration pneumonia but is beginning to improve.
Oct 18, 2006
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
Photobucket
Quinn's upper GI was rescheduled due to miscommunication. I will know the date soon. She is taking Reglan and is on the highest dosage for her age. She is also on Prevacid and is taking 15mg per day too. We just saw the speech therapist. I posted about it in the Genneral, Beginner, Infants forum. Basically she needs alot of help with her tounge coordination. She has low muscle tone and some possible breathing problems. I've always thought she had breathing problems. But I do believe they are getting worse. Especially the snoring. Referals referals referals!!! She is going to try and bump up our appointment for the reconstructive surgeon. Also a referal to PT because her muscle tone is low. Also ENT to check up on her breathing. We think it is obstructive. And we need to watch to make sure she doesn't aspirate into her lungs. A referal to the nutrition specialist because of her weight. And we will see her weekly. But otherwise she is doing great! Surprisingly to me, her puking has gotten much better. I'm hoping to see a weight gain at this next pedi visit. It's on the 25th. I know that she is silent refluxing though. She is turning her head away from her food more often. She coughs and gets red watery eyes from out of no where. She'll stop whatever she is doing to swallow down her reflux and gasp for some air sometimes. I will relax a little more when we start deleting doctors and not adding them. I'm anxious to know what the upper GI will tell us. I'm happy to hear that your son is doing better. Did your son's problems start at birth or did they develop in time?-Sarah
Check with your
doctor first!