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May 26, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
our UCLA visit
Our pedi got us an appt with the Chief of Pediatric Gastroenterology at UCLA Children's. It was this morning. He was very nice, but he is MUCH more aggressive than my current GI. (In treatment of course)...anyway, he mentioned that kids who 1.) start vomiting late like Z did at 10 months and 2.) aren't done by 18 months usually need the fundo. That scared the crap out of me. He thinks that this current bout of not vomiting is probably an anomlay from the virus. We will do a PH probe and Gastric Emptying scan. Of course we are not rushing into anything. We will start with these tests and see where we get...who knows maybe we wont ever puke again. (har har) Anyway, this guy is supposed to be the best of the best...he would place a gastronomy, but would not want him fed via g tube as he feeds orally. Isn't totally displeased with his size because he is in proportion and has some pudge reserve. He gained back a little more of the weight he lost, too...he was at 21...then 20.6 last week...this morning he was 20.8 and 29 inches. He assured me that my child WOULD eat a sandwich someday. I'm not so sure
May 26, 2009
mommato3
I'm glad you were able to get into see him! I think the PH probe and emptying scan are a good start. I know the fundo word scared the stew out of you. The doc mentioned it to me and it did and still scares the stew out of me. Is that what I understand that he would put in a G-tube for venting but doesn't want to try that first (just a g-tube) b/c he is oral. That is what our GI said about my son (but mine is only 6 months old). Basically that my son was oral so he wanted to do the fundo instead of the G tube in hopes of keeping him oral although he would have one to vent. Although I have heard that could backfire. Is that what he was saying to you? Hopefully you will find out some useful info on the tests he has ordered. What other tests has he had? I remember the scope not too long ago looked good. That should make you feel good that he isn't worried about his weight/height. Has he always been tiny. I know we tell you this all the time but he is a cutie pie. Let us know when the tests are. Best of luck.
May 26, 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 will promise you, one day they will all eat. I never thought Jedd would and he does. He still struggles and has pretty much NO self feeding skills to speak of, but all his food in going in orally instead of his tube. It's amazing.

I will tell you that Jedd was a puker....I mean a HUGE puker!!!!! TIME is a puker's best friend. I would ask them to give you until your child reaches the age of 2 or older. We really didn't see a drastic difference in Jedd's amounts of puking until around that age. It was like someone turned OFF the switch, literally. He went from lots of puking and by the day/week/ it went down. Until now, we see may one puke every 2 weeks. We can occasionally go much longer.

Just ask for time. If he is a reasonable man, which he should be, then he would be willing. Puking and a Fundo really do not mix.at.all. It will just cause retching. And I'll warn you, you may end up tube feeding for a bit due to the retching.

We decided a long time ago that we would only do a Fundo if there were life threatening issue present. Since we had none our GI and surgeon allowed us time. BEST decision we all every made for Jedd.

May 26, 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
Also, you need to remember that GES are notoriously unreliable. They can tell you that gastric emptying is normal when it actually is not. Jedd's had 2 and both came back normal but I could drain his gastric contents and PROVE that he was moving VERY slowly.
May 27, 2009
helen lai
Mom to Matthew, 01/16/08, GERD baby, has been on Zantac since 2 mos. Aidan, his twin brother, no GERD. Max-ed out on Zantac at 1ml-3 times/day, and switched to Prevacid 15mg split tab 08/20/08. Switched again to 20mg Prilosec 09/18/08 due to Prevacid's restlessness/headache side effects. Reflux was out of control again and had to switch to 10mg Nexium 02/11/09. Good result so far.
I'm glad you got to see the GI. I'm also living Southern Cal and know it's hard to get an appt with a good GI like that. I hope the new GI will work with and listen to you to find the best course of treatment for Z and avoid fundo if possible. Please keep us posted. Big hugs.
May 27, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
Jessica, I thought of you and Jedd the whole time I was in there with the doc. He was a reasonable man...and I think he understands my frustration and concern. Zack hasn't been eating well for three weeks...we're down to 17 oz a day, but he's not currently losing weight AND he hasn't puked in three weeks...it IS like someone turned off a switch...I will do these tests as I have actually wanted them done, but I am sincerely hoping that this non puking is NOT an anomaly. He is about the same age as Jedd was when his puke switch turned off (he's 20 months)...so I'm HOPING and praying that we have a shot at this. Zack LOVES to self feed...but he also loves to take it out and put it back on the table. He will "eat" out of an empty bowl witha spoon and fork like nobody's business...he can drink out of a sippy and an open cup...he loves putting snack food in his mouth..he just WILL NOT chew and swallow. *sigh* Anyway, thank you all for your input and i'll keep you posted!
May 27, 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
Jedd for a while was putting food in and spitting it out. So, that is a start. IT will come, it just takes time. We had more time than you did because we could tube feed at night for a while to help make up the difference.

Do you do any oral exercises with Zach??? That will help as well. Most kids who gag on textures are doing so because they don't have the muscle control to swallow it correctly and thus they gag on it.

Try little Griptz (these come in cookies and cheezits) with him and see how he does. that was just about one of the first solids that went down really well, besides cheesy puffs. Those 2 foods will scatter in the mouth really easily and thus will be easy to swallow. Those Griptz are about the size of my pinky fingernail. VERY small but, they are easily eaten.

BTW I love the new picture, Zach is such a cutie!!!!

May 27, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
any idea where to find Griptz? I looked it up online and can't find anything... He's in feeding therapy twice a week and she is really great...he is MUCH less sensitive than he was...and he hasn't shoved his fist down his thoat in three weeks either...which is nice. I'm seeeing MUCH less gagging, but still no swallowing...cheese puffs get sucked on, but that's it! Thanks as always for your advice...
May 27, 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 find the Griptz cookies in the snack food aisle at WalMart. They come in handy little packages instead of big bags.
May 27, 2009
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
I am so glad to hear that you got in with the head of gastro. That has to be a great feeling. Best of luck!!!!
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.
Just remember too that a lot of kiddos (& adults) ending up getting a fundo before getting the dx of eosinophilic esophagitis. In those cases, a fundo is totally inappropriate. El
May 28, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
Thank you...and you're right..but he has been tested for EE and it was negative...he's been tested for EVERYTHING (it seems like!)
May 30, 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+.
We have seen the GI you are referring to and he is a little on the aggressive side. I liked him though. I am glad they are doing some more tests. I hope the no puking continues and that you don't go down the fundo road. But if you do we loved UCLA. Aidan had his fundo done there by Dr. Dunn. We loved him and his staff. It's not the end of the world if that is the road you have to travel down. I hope you get some more answers from the testing.
Check with your
doctor first!