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Jan 09, 2009
yianni'smom
Yianni was born 09/08. He has MSPI. He was diagnosed with GERD at two weeks. He is currently taking Prevacid three times per day (7.5, 7.5, & 15). He was on Reglan for eight months and was doing much better. We took him off because of the hype. Now we are riding the reflux roller coaster again.
Yianni Update
For those of you read my first post yesterday, I thought I'd update regarding what happened at the GI visit.

1. Most importantly the doc said the apnea events aren't a concern and are false reports since his heart rate isn't being affected (even though the graphs show a low heart rate). He disregarded the report. I don't know how to read the reports, but when his breathing goes below zero and the heartrate is 110, I thought that was significant. I guess I'm wrong. I did drop off the report for his pediatrician to also review. I guess the machine is just very sensitive. I think Amanda (Adriane's mom) described what's happening to Yianni. I watched him last night after the alarm went off and he was swallowing something and making a face of disgust. I think the alarm beeeps when he is refluxing.

2. GI suggested changing brands of oat cereal from Beechnut soy free to Earth's Best. He said it may be the wheat that is bothering Yianni. He did say he may be allergic to oat, but the tests aren't reliable, and if it were that bad Yianni would have hives. He dismissed the diaper rash as a non-issue.

3. When I asked about Simply Thick, he said he'd never heard of it and I must be talking about Thick It. He said it's not recommended for infants. (Yeah, neither is Prevacid or Reglan, but Yianni takes those).

4. Regarding the corn allergy he said it's possible, but there aren't any other formulas to try. I asked about Neocate and he said, "Oh, okay, yeah" and went to look for a sample. He didn't have one; he told me to check back in a couple days or call Y's pediatrician. He did say it would cause constipation and dark stools and to use Milk of Magnesia to combat that issue.

5. Facial swelling: He said the swelling isn't significant enough to be a problem.

6. Zantac & Prevacid combination: I called the pharmacist before the appt., and he told me that Zantac decreases the effectiveness of Prevacid because Prevacid needs an acidic environment to work. The doc seemed annoyed and told me that is just a theory and not correct. He then went on to explain why--something about the pellets opening up in the small bowel, etc...Sorry I don't remember it all (Y's monitor went off every 20-30 minutes last night).

7. Vomiting 5 oz. per day is not a big deal because a lot of that is gastric juices/saliva and Yianni weighs 16 lbs.

8. He upped the meds to 1.4 ml of Zantac 3x/day; 0.8 ml of Reglan 3x/day; and Prevacid 15 mg. 1/2 tab 2x/day.

9. He hasn't received a copy of the sleep study yet (It was performed December 1st).

I hope upping the meds works. I also fed Yianni Elecare with the new cereal and he seemed to like it. I guess we will see.

Jan 09, 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
UUMMM Where are you getting seen at....I'd be looking for another GI soon.

In regards to:

#1: IF the alarm is beeping when he is refluxing you need to find out if he is aspirating and soon. You can do a swallow study.

#2: I'd still switch away form any cereal in the bottles. They can cause sooo many other issues, it's really not worth it esp since you are dealing with allergies on top of GERD.

#3: We have personally used Simply thick, so it does exsist.....LOL and yes, I know kids who have used it since their kiddos were itty bitty. So yes, little tiny kids use it for aspiration swallowing issues.

#4: I hope the switch to Neocate makes a difference.

#5: UUUMM, I'd be worried about facial swelling that's for sure. He gave you no explanation as to why your child swelled????

#6: You CAN use them both together. We used a PPI and an H2 together VERY effectively. You have to space apart the dose. They can NOT be used together that's when you have the issues. We gave one in the A.M. and one in the P.M. and did it for months while weaning Jedd from his PPI to an H2 full time.

#7: Yeah, 5oz is not too much really. Jedd could do that 3-5 times per day... more sometimes. But still If he is acting like he is in pain when vomiting that is a sign that the acid is NOT under control and the meds need to be tweaked.

#8: I hope the meds doses start to work quickly for you. Just be careful how you dose them out and space them.

#9: I hope they get copies of the sleep study quickly it is always hard to wait on results.

Jan 09, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Hi, I read your post yesterday. Sorry you have such an insensitive A-hole for a GI. Really, his explaination are WAY OFF. Just wanted to add that Neocate contains corn syrup solids, so if your worried about corn. Just something to consider.
Jan 09, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
Sounds like you'll be searching for a new doc. Is your pediatric doc good? Maybe they could refer you to a different GI. I'm so sorry you're dealing with a lame doc, it just makes things harder when you feel abandoned by the one who's supposed to help. I'm in a bit of the same situation in that I'm looking for a new doc too so I feel your frustration. I send you good thoughts & positive energy!
Jan 09, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
not much time but wanted to say sorry about the apt! i hoped it would have gone better for you, from what i researched on my own zantac taken at the same time as prevacid does decrease the effectiveness, but taken at opposite ends of the day or even as little as a half hour apart, DO NOT cancel each other out. Zantac is a histamine blocker and Prevacid works on the Proton Pumps in the beginning of the small bowel and stomach.

now i am not a dr and this is just from what i remember reading, i could very well be mixing some things up SO i would suggest asking for a pH probe before doing this b/c if the child is Not producing too much acid, then the combination can cause AR like symptoms that could be much worse then the original ones.

vomiting is a big deal if it is acidic, it could cause damage.

Has your child ever been evaluated for Cushing's Syndrome? Facial Swelling is a big symptom!!

good luck with the elecare and new cereal oh and this is for your GI dr! http://www.simplythick.com/ :)
Jan 09, 2009
yianni'smom
Yianni was born 09/08. He has MSPI. He was diagnosed with GERD at two weeks. He is currently taking Prevacid three times per day (7.5, 7.5, & 15). He was on Reglan for eight months and was doing much better. We took him off because of the hype. Now we are riding the reflux roller coaster again.
Words cannot describe how extremely grateful I am for all of you and your wisdom. Thank you for taking the time to post.

I am definitely going to get Yianni a new doc. His pediatrician is good, and I really like him. He has done a lot for us. He did tell me there needs to be one "captain of the ship" and he didn't want to "step on anyone's toes." However, it's time to switch the GI doc.

My gut tells me those apnea alarms are not false. Something is going on.

I knew the doc was strange when he told me no one is going to have a "perfect" baby. I thought he was implying that I exaggerate or that Yianni's symptoms are not serious enough to merit attention. I'll admit I questioned my sanity for a bit, but all it takes is one bad moment--and there are many each day--to say forget that; I'm not crazy, this kiddo is sick and in a tremendous amount of pain.

Jan 10, 2009
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
I also vote for a new doc - first of all, just because a doc hasn't heard of something doesn't mean it doesn't exist. Simply Thick and Thick It are both used regularly by moms here. Is this a pediatric or adult GI? I've never heard of a GI doc NOT having Neocate samples. And Neocate may or may not make him constipated. Sometimes it's a non-issue. I think Neocate also has some corn in it, but not much. Also, no MD should be "annoyed" at another healthcare professional, at least not visibly. That is so arrogant it peeves me off.

I'd also definitely get the breathing issues sorted out. If you can, maybe contact a pulmonologist if your ped or GI won't do anything about it. If you're not already, what about raising the head of the crib to have gravity help keep the aspirations down?

We also used a PPI and H2 blocker until recently. We did the Pepcid in the mornings and Prevacid at night. Oh, I'd ask if the REglan can be given with the prevacid (I seem to remember it's not too much of a big deal if they're given together, but I know Prevacid pretty much needs to be given on it's own, PERIOD, to work correctly.

Oh, diaper rash. Ask your ped or pharm if you can try Lotrimin, since most diaper rashes are yeast-related. We also use Balmex, which worked the best for my DD. HTH! My monkey is calling - time for breakfast!

Jan 10, 2009
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
EWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWWW

Nasty doc! Hey I vote for a new one! Where do you live? maybe someone here can suggest a good GI.

For a doc to "swat" away your concerns..... just makes me upset!

Joslyn stopped breathing and turned blue at 3 days old..... if the er doc would have "swatted" that way..... we could have lost her! It was the ER doc that sent us to Children's of ATL. It was them who found out Joslyn's problems!

Dont be swatted away! OHHHH that makes me mad!

Good luck and hugs to you LO

Jacky

Jan 10, 2009
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
If I recall right, reflux can cause obstructive sleep apnea. R u in Atlanta by any chance? Meggy's used to go off so frequently because her breathing was so shallow that the machine couldn't pick it up. A pulmologist would be better able to help than GI.

Meggy never tolerated those cereals and still to this day, I think back what would have happened if we had tried Thick it or simply thick instead of the cereal she couldn't digest. Maybe the diff. is that u can pick one up from local pharmacy.

Our genetic doctor says that swelling of the hands feet, and face, can be a significant problem and could indicate water retention, underlying disorders, allergy, pulmonary hypertension, or other things. I am curious why the swelling is of no significance when there is suspicion of allergy.

Meggy is extremely sensitive to corn, especially the syrup and High Fructose Corn Syrup. The elemental formulas contain so much more corn than basic formulas.

Kathryn, I am glad u discovered the same about not producing enough acid. Our GI literally laughed in our face when we tried to ask her about this and asked if we were joking.

As for the way the doc. approached the apneas, I don't think it is appropriate, but we have gotten this as well from an apnea specialist who said "there are a lot of kids worse off than your daughter and you should be thankful for that."

Follow your instincts.

Jan 10, 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.
Thoughts and prayers to you that you will find a good doctor to help you.

You aren't crazy - you know your child.

Jan 10, 2009
yianni'smom
Yianni was born 09/08. He has MSPI. He was diagnosed with GERD at two weeks. He is currently taking Prevacid three times per day (7.5, 7.5, & 15). He was on Reglan for eight months and was doing much better. We took him off because of the hype. Now we are riding the reflux roller coaster again.
Good news! I dropped off the apnea report to Y's ped at 3:00 p.m. yesterday; he called me at 12:00 this afternoon to discuss. The man is a saint. He said the machine isn't sensitive enough regarding the "impedence." It's not picking up the signal, it's weak. He wishes the sensitivity was larger. I guess usually a baby will be breathing and then it will all of a sudden drop off. With Yianni, his breathing drops off before the apnea or alert (I'm still kind of confused about this) begins; he doesn't think this is that much of a problem, but totally trusts my intuition that there is something going on. Either he is sleeping so deeply the machine can't detect it and/or he is refluxing, and as Adriane's mom stated, he stops breathing to protect himself. I told the ped that it's hard for me at times to tell if Yianni is breathing because it feels like no air is coming out of his nose and his chest doesn't rise (napping off the monitor). When I call his name, he'll start breathing but remain sleeping. I told him how I saw him the other night swallow after the alarm and make a face of disgust. Doc said we're keeping the monitor, but I am to call the company to see if they can do something about the impedence/sensitivity of the machine. Can anyone clarify this?

Ped also said new doc time. I am going to make an appointment Monday. He gave me the names of two docs, and put me on hold to ask his office who was the absolute best. I live in Boca Raton, so I will see a ped GI in Fort Lauderdale.

I gave the Prevacid alone today. Yianni had a MAJOR FLARE two hours later. I don't know if that has anything to do with the switch. My dad who was babysitting said he was literally crying to see his grandson in that much pain, and he's an ex-fighter pilot who rarely cries! I feel so bad for leaving to go to the store. Poor baby. I'm confused on how to dose, but I'll create another post as this one is becoming a novella!

Ped said to give Yianni 1 tsp of Mylanta when he's freaking out. Has this worked for anyone?

Ped was also the first one to tell me not to combine the meds if I can help it. Ped is always right. Ped was a neonatalogist at Duke. I like him. He listens to me.

I did ask about Cushing's, and ped said absolutely not, he was tested at birth.

Ped will do allergy blood work. :) I'm waiting for DH to get home to take Yianni for his 4 month shots where we will see ped. I'm waiting because last time Yianni had an episode where he went limp and was dazed after his 2 months shots. We ended up in the ER. All turned out okay. I don't want to go through that alone again. I'll wait until DH gets home which is less than a week!

Ped said we could try Neocate, but he said they're very similar. I think I'll wait until we speak to the new GI. Wow! Thanks for reading.

Jan 10, 2009
isobel'smamma
Sara, Mom to Isobel 10/01/08 Dx Silent reflux @ 6 wks. Prevacid 22.5mg split in 2 doses. Pepcid .5ml twice a day. Diagnostically confirmed milk protein, egg and cat allergy. Suspected corn, pea and squash allergy. Trialed Alimentum and Elecare without success, currently on Isomil Advance RTF with moderate success. Barium Swallow and UGI 3/08 Pondering a ph probe and endoscopy.
I live in the Wellington area.... Maybe we can compare notes on docs in the area. Sara@hamandi.com ...:....... I never had any luck w/ mylanta but I'm lucky in that prevacid works beautifully for my girl.
Jan 12, 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.
We does the prevacid and reglan at the same time per the GI and the pharmacist...In fact, I mix the reglan with the prevacid witha little water and he drinks it right down. (most of the time...)
Check with your
doctor first!