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Nov 04, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
DCD How did the Scope go?
How did it go?
Nov 04, 2010
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I was wondering as well!!!!
Nov 05, 2010
kavyamom
Hope it went ok? I only saw your posts now asking about the endoscopy, etc. I hope you did a search of previous posts because I had recently written about my experience with the endoscopy. Let us know how she is recovering? The actual procedure for Kavya was quite easy but the 2 days after the procedure was quite bad because of some intolerance/allergies to the anesthesia meds.
Nov 05, 2010
dcd
Hello ladies, Thanks for asking and again thanks for your support. I am so glad we did the scope. Your encouragment helped reassure me that it was the right thing. The procedure was no where near as bad as I was imagining and, mercifully, SO QUICK. Best of all, the doctor said there is no observable damage to Kylie's esophagus, stomach, or intestine. He said everything looks completely normal. Which means her reflux is either well controlled with the Prevacid or not acidic to begin with. He also said that any damage from the food allergies has healed itself in the 2 months she's been on Neocate/rice cereal only. It will take a few days to get the biosy results back, and then we will be able to basically rule out stomach issues.

We got there at 7:45 and they took us back around 8. We met with the nurse, anesthesiologist, and GI. The were thorough in their explanations and answered all our questions, but very efficient. The doctor said, "we can't reason with her at this age, so we just need to get it done and over with." I couldn't have agreed more!!

They laid Kylie on the bed to put her IV in. This was the worst part. My husband and I opted to stay in there. I wanted to be with her until she went to sleep and back with her before she woke up. We rubbed her legs while they put the IV in. I didn't watch and I cried along with her. They couldn't get it in the first arm so they moved to the other. It felt like forever, but the entire process probably only last one minute. The sedative worked really fast and she was asleep in another 30 seconds.

We probably only waited in the waiting room for 5 minutes before they called us back. The doctor showed us pictures from the scope and gave us the good news as I held Kylie. Soon after, she started waking up. She didn't cry and wasn't mad. It was a very calm process. We stayed for about 30 minutes as the sedative wore off completely. I just held her and fed her a bottle. We were in the car on our way home by 9:30.

Kylie was fine the rest of the day too. We took a 2 hour nap together and then played and ran to the grocery store. I think she was a little more clingy to me than usual but I could be imagining that. All in all I don't even think she realized what happened and again, it was SO FAST to get such peace of mind.

Now we have narrowed it down to asthma and breathing problems as responsible for any night waking. She coughs so much at night and allergies are terrible in Texas. I have been doing my reading about this, and it adds up. Her nighttime coughing fits are likely actually asthma attacks. We switched asthma meds/methods last night, using a spacer/holding chamber/mask instead of the nebulizer/mask and it went so much better! (The spacer only takes 30 seconds vs. 15 mins of holding the mask to her face with the neb.) She slept so much better and barely coughed. I am looking forward to our upcoming appt. with the pulmonologist in hopes that she will help us come up with a long-term plan.

I think she will never eat as much as is "recommended" for her age. She is petite and very busy, so that's probably why. I'm not sure why she was having pain with her bottles again, but she hasn't had any the past couple of days. I have to guess that maybe that was just leftover from being sick...she wasn't hungry and was getting upset when I kept offering her the bottle. And as I've learned before, old bad eating habits come back when she isn't feeling good. The coughing/choking/gagging with bottles is likely related to asthma and congestion.

At least that's where we're at now. I'm glad they sprung the appointment on me and it's over now and I won't have to agonize about it for another month. We put it off for so long, and I can't overstate what a relief it is to finally have answers and not have to guess and secondguess what is going on with her stomach. I was at a point to where I couldn't live like that any more. Now I feel like we are building our plan to move forward. We have to get her asthma under control. She is getting her tubes so we don't have to worry about ear infections so much. I can be more relaxed about how much she does/doesn't eat. We are reintroducing foods slowly. Eventually we will start backing off the Prevacid a bit to see how she does.

I was hoping after the appointment I would be able to rule GI issues in or out. We are so fortunate to be able to rule them out (almost...still waiting on those biopses). And I was hoping that I would feel like it was worth it, and I do. :) I am grateful for PAGER and the wealth of experiences shared here!

Nov 05, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
Whoo Hoo!!!! I am so glad for you that it is over and that is went so quick. Our minds can do terrible things to us during the waiting process. So glad to hear that everything has healed up and that the new formula and Prevacid are doing their jobs. Big sign of relief for you.

Regarding the nagging cough... You may find that it disappears once the tubes get put in. It did for Ryan. The constant dripping of fluid out of his ears really did a number on his airway. Once the tubes were in and the gunk was suctioned, the night time cough went a way. I will cross my fingers that your daughter will be as lucky.

Nov 05, 2010
kavyamom
So glad that it went well and that there is no damage! Also, glad that Kylie didn't react badly to the anesthesia meds like Kavya. Kavya didn't vomit at all but was having a lot of stomach discomfort for 24 hours after the procedure. Good luck with the pulmo appt.
Check with your
doctor first!