Posted By Posting
Mar 12, 2009
mommato3
Tests
Well, Cincinnati called and told me they presented Holden to the feeding team yesterday and they want to do a comprehensive work up since he has had so many problems and we have already done a number of things. He is almost 4 months old and is on 30 mg Prevacid, Elecare, Reglan, and has speech, physical, and nutrition therapy. These are the tests they want to perform FEES study (Fiberoptic Endoscopic Evaluation Swallow) Video Swallow (Already had one of these before) MRI Gastric Emptying Scan Sleep study Triple Scope (MLB, FLexible bronchoscopy w/ lung wash, and EGD) Impedence Probe Genetic testing See pulmonologist What are your experiences with these tests. My son is so young to go through all of this and to be put under anesthesia for the scope. My husband and I trust the docs in Cincinnatti though and my son has had such great feeding difficulties. What are your thoughts? Thanks!
Mar 13, 2009
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'll be back later I'm getting ready to head out to the store to grocery shop. But...

I know someone who brought their child to Cincinnati for their feeding team and then did some work there for feeding on an out patient basis. She says they do force feeding. Basically they "force" the child to eat and even held her child's hands down while making the child take the spoon.

Force feeding can and will make a feeding aversion worse. JHMO.

We've had some of the tests done, I'll elaborate more later.

Mar 13, 2009
mommato3
Thanks! Undergoing so many tests at such a young age is scary to me. He is my third child. Just curious as to what your experiences have been with these tests. I know he won't take the desired amount of liquid for the emptying scan in the amount of time needed and then I'm scared he will puke it up. Also won't the reglan and prevaciid skew the results? What about anesthesia at this age for the scope?
Mar 13, 2009
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
I can only answer a few of your questions as my son didn't have all of those tests but my son was put out for endoscopy at 12 weeks and he did just fine under anesthesia. He was completely hysterical when he came out of anesthesia but was himself within hours. I would just make sure that they coordinate the pulmo and GI etc. so all of those tests get performed at one time so he only has to go under anesthesia one time. The Reglan and the Prevacid won't skew the results of endoscopy. Either it will show the meds are working as in a clean esphogus or it will show damage proving that the meds aren't working. GI may tell you to take him off of all the meds before testing. It really depends on the GI some will and some won't. I hope you get lots of answers from all the tests. I am sure Jessica will have lots of good info for you!
Mar 14, 2009
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
Ok sorry it took soo long my day got away from me and I just got home from work. Gotta go back in at 9:00 too. I'll be one tired puppy by the end of the weekend. Didn't wanna leave you hanging though.

I will second the coordination thing. Even though it is really safe to go under you really only want to do it if ya have to. KWIM. Hospitals should be used to doing more than one thing in the OR at a time. It might take a bit for the scheduling though. It would be worth the wait. Alot of time they won't want to sedate back to back so it will take some time to get those sedated tests done. They like to wait X amount of time between sedation.

I would def. get that EDG and Bronch scheduled. Do you see a Pulmo yet??? They can give a totally different spin of GERD so it may be best to add one.

Our EDG was done ON meds. Our Impendance Probe was done off all meds. Motility meds included. We used Erythromycin. We had better success with Reglan but it turned Jedd into a screaming demon. It wasn't pretty. We lasted 16 weeks total.

We haven't had genetics testing done. My sister and her DH and their DD did though. They just had a blood draw on all 3 of them and then sent it off to the labs. It took a while to come back though. She (the DD) has a chromosome deletion. A very VERY rare one. She is one of 16 people in the WORLD who have that specific deletion. She is a RARE find.

Jedd's Impendance was placed un sedated. It all goes really fast. It took like 1 mins to place Jedd. He was used to getting a tube shoved down his nose, so he didn't' fight as bad.

The nurses who place those probes are used to doing it so it will go fast. Will you stay IN the hospital for it??? We did. I think it was easier that way. Someone stays in the room with you to log all the burps, hiccups and coughs and such. They also logged in when he ate, what he ate and when he finished. They also stayed awake all night to continue watching him and logging what they saw. I got to sleep.

The downside to NOT going home with the probe is that the child can "act" like they normally would at home. So we tried to have Jedd do whatever he normally would if he was at home while he was attached to the machine.

He was ALL over that room. Climbing on everything...LOL It was quite funny.

The one thing I will tell you about the Impendance is to make sure they tape that sucker up really well. They will try to yank it out. Jedd did. It was good that I was used to having hte NG since he had had it in his nose for soo long prior to his G tube surgery. I knew he was going for it and ran across the room yelling at home and caught hm mid act of yanking..LOL He didn't get it out all the way. Just a tiny tiny bit. They remeasured it to make sure.

Let me know if you have any other questions. I have pictures of Jedd with his probe in as well.

Mar 14, 2009
mommato3
Thank you so much. We did go ahead and tell them to go ahead and schedule all the tests. It will be coordinated where the scopes, possibly MRI, and probe inserted at the same time under 1 anesthesia. We will stay in the hospital for sleep study and probe. Cincinnati is 11/2 hours away from us. The other tests will try to be scheduled around the same time as well (especially if we will have to get off meds-Wow-I will call and ask them about that. It may be 4-5 weeks. I'm very anxious. This feeding stuff is the hardest thing I've ever had to do. Some days I just cry and cry. Right now I can just hear him refluxing after just 1 ounce. If he wasn't on the Reglan he would have puked it up. He is trying to eat/suck on my face, his hands everything. I know it is because he's hungry but he refuses to take any more of the bottle. So sad!!
Mar 15, 2009
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
What meds and what dose are you using?? They may need to be switched or upped.
Mar 16, 2009
mommato3
He has been on Reglan since 4 weeksold. Now takes .6ml 4 times a day (can't do much more of this because of side effects) but any less of this and he pukes everything. He's been on 15mg of Prevacid twice daily (30mg total). He was just upped from 15 mg a week ago. They want me to wait at least one more week on the upped dose of prevacid. Wonder if we need to throw in some zantac or change the prevacid to prilosec or something?? Also what is this carafate stuff?? My pediatrician is of no help. She was horrified the GI doc put him on 30 mg of Prevacid and was shocked that he put us on Elecare withou any further testing. I told her that they were going to do further testing but in the meantime my baby was refusing all food and we have to try something. That could really help things. She said she had never prescribed elecare because it was so expensive and she couldn't understand and had never heard of a baby only eating while asleep. She is obviously very ignorant when it comes to severe GERD babies and to aversions. Sorry had to vent about that!
Check with your
doctor first!