Posted By Posting
May 26, 2009
mommato3
What to do next
Hey ladies! Holden is currently on 15 mg of Prevacid twice a day and erythromycin .75ml three times a day (He was on Reglan for 5 months prior to this.) He is six months old and weighs 17 pounds. He was a 9 pound baby (started off in the 90th percentile and now around 45% for weight. He just doesn't seem to be getting any better. Now that he has grown, it takes a lot more food for him to grow and his tummy is maxed out. He is never hungry. All this started when he was about 3 weeks old when he had to either take more than 2 oz at a feeding to grow or eat more frequently and he wouldn't do either. Then the projectile vomiting started about 5-6 weeks old. I spent an hour getting him to take a bottle (while he was asleep) this morning just to have him puke up the entire bottle immediately after he finished it. Here are the tests that have been done-UGI, Gastric Emptying Scan (mild delay and mild reflux-yeah right!), Impedance probe (202 reflux episodes 98 were full esophagul only 3 acidic), Triple Scope (EGD, larangoscopy, bronchoscopy)-everything looked good but LES muscle was only partially closed, bronch only showed very minimal aspiration which pulmo said wasn't of concern, Sleep study (mild to moderate obstructive sleep apnea O2 desats didn't go below the 80's), MRI (normal but showed his micrognathia which we knew about), 2 video swallows-no aspiration but very uncoordinated suck/swallow pattern, FEES study). He is in early intervention (ST, PT, and nutrition). He takes Elecare and will eat some baby food but like I said he is never hungry and will puke if he gets more than a couple of bites. We see a GI and the feeding team at Cincy. I am unhappy with his GI (bedside manner). He just finished his fellowship and doesn't have any kids of his own yet. His next step for Holden is if he doesn't gain sufficient weight to perform another empyting scan and to refer us to a surgeon for a nissen. I don't want to do that. Cincy won't let me change docs within the department. I could travel about 3-4 hours to see another GI but I'm not sure there is much more to try for Holden. Our pedi doesn't mind prescribing his high PPI dose or the motility meds. Holden is only fed when he sleeps. He gags and gets choked at every feeding (but once again the swallow study shows no aspiration on the swallow). He vomits his bottles all the time (He does this when he is being fed.) It takes me hours to feed him. What could I try next? He seems to be maxed out on meds and the PPI must be working as he has no damage from all this reflux. Also has anyone who has had a scope done had your child's LES muscle be only partially closed?
May 27, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
Hi there. Sorry to hear that you are frustrated and feeling like Holden is not getting any better.

Good news that there was no damage or inflamation on his scope.

Did the GI do biopses to check for EE and other intolerances like lactose?

It sounds like your current GI may be a little unseasoned. Seems kind of quick to recommend a Nissen. I think if I were you I would demand to see another GI. Not only because your current one seems to lack experience but it would be good to get a second opinion since he is going down the road of surgery. JMHO.

May 27, 2009
mommato3
Thank you! I called the lady who is in charge of people changing docs, getting second opinions, etc. every day last week and she won't return my phone calls. I think that doctor said something to her. When I spoke to her the week before she told me that I would have to talk to the doctor and she would have him call me. Well he called me and it didn't go too well. He was very cocky (however you spell it) and uncaring. I spoke my mind with him though. I will continue to call that lady this week as well until I driver her nuts and she helps me with the doctor change. I think you're right. The first thing I need to do is find a GI that I feel good about. They did do biopsies which came back normal. The only abnormal thing was the scope showing his LES only partially closed, the probe, and the GES. My pedi doesn't want to refer me just yet to anyone else as he says Holden is holding his own as far as weight right now (Thanks to mom playing the feeding tube) and the next step would prob. be something invasive so basically he says there is not much more the GI can do right now. I don't know. I just hate to see him vomit and get choked so much. Thank you ladies for listening.
May 27, 2009
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
Just a thought - could you really press your ped. to refer you to another practice entirely? I know he/she doesn't feel it is necessary but if you explain your dissappointment with the current practice and the fact that although Holden may be "holding his own" you would like him to be making more progress.

BTW that young doc sounds like a really ass.

May 27, 2009
mommato3
LOL!!! That gave me a good laugh as I needed one, but you're right he is one!
May 28, 2009
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
As far as testing for EE (eosinophilic esophigitis), the baby would have had to had a scope WITH BIOPSY and he also would have to be consuming foods (BECAUSE ELECARE & NEOCATE ONLY ARE TREATMENT FOR EE). My son started the projectile vomiting early too & other than a milk/soy/egg/nut allergy, he also had EE detected at age 2 1/2. Hope you get to the bottom of it all. El
May 31, 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 just wanted to let you know that my son had a wide open LES on all his scopes which was just another reason we did the Nissen. Quinn another child on this board also had a wide open LES before her Nissen. I am not sure what the next step for Holden is but I would think a second opinion is in order for sure. Keep us posted and if you have any Nissen questions let us know.
May 31, 2009
mommato3
Thank you! I just wonder if since it is partially closed and he's only 6 months old will it fully close. I think your child and Quinn were older when they had his nissen. I just wish I could by some time but i'm so tired and it makes me sick to see him choke, gag, and vomit so much. We go to a different doctor July 9th. Hopefully, he will have some input. Thanks again. I may have some nissen questions after we talk to him. Since my son is so young would you try a feeding tube before the nissen. They had told me even on continuous feeds it still wouldn't stop the reflux and since he was oral they wanted to give him a shot a keeping him oral. The lung wash showed minimal aspiration.
Check with your
doctor first!