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Jan 08, 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.
Newbie: First post
I'm happy that I found this website. My DS, Yianni, has GERD and is still choking, vomiting, sneezing, arching in pain, breathing like a lion cub, etc. I'm used to this as these symptoms have been ongoing since he was two weeks old. His new symptoms are facial swelling after his bottle of Elecare thickened with 5 tsp of oat cereal; refusing to eat (very new--he used to want to eat all the time), seems to be starving, but he will push away the bottle; diaper rash despite treatment; and backbends in bouncy chair or while having his diaper changed. I'm wondering if he could be allergic to the Elecare. I thought his face was swelling because of the meds (Reglan, Zantac, & Prevacid), but his face will swell immediately after drinking his bottle. Any ideas? Could it be a corn allergy? His diaper rash seems to get worse when I use Triple Paste cornstarch over the diaper cream (we use Burt's Bees). Could he be allergic to the small amount of lactose in Prevacid? Also, I just received a copy of his downloaded apnea monitor and he has had 31 apnea events in three months. What does this mean? I'm waiting for the doc to return from lunch. We have an appt. on Monday with his GI; but I wanted to be informed about other options before I went in. Thank you for reading!
Jan 08, 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.
Sorry about the voluminous post! I thought I included paragraphs. Yianni was born 09/08/08 and has MSPI. He takes 1.2 ml Zantac 3x/day; 0.7 ml Reglan 3x/day; and 7.5 mg Prevacid 2x/day.
Jan 08, 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.
I cant help you too much.... but the paragraphs will work if you typ

before every paragraph!

Poor fella! The apnea events are high. I am curious as to what the doc will say.

Jacky

Jan 08, 2009
abbysmom
Andrea: Mom to 3 crazy girls!
Jackie (3/01)
Payton (9/03)
Abby (4/06) Prevacid 7.5mg (evening), MSPI, goats milk (currently trying to wean off Prevacid)
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First Welcome! You have to type < p > without the spaces to make a paragraph. To start you might want to look into trying Simply Thick to thicken his formula instead of the oat cereal. That can cause GI upset at a young age and also, some contain milk and soy ingredients. Then make sure that you are giving the Prevacid on an empty stomach and waiting 30mins to feed. It is most effective this way. And make sure that you don't give the Preacid and Zantac together. I think that have to be at least 2hrs apart but check with your pharmacist to make sure. My dd, Abby, was on Neocate so I am not familiar with Elecare and its ingredients. How long has he been on it? Abby was MSPI but was never bothered by the small amount of lactose in the Prevacid. Her GI said that since it is a milk sugar and not a protein it wouldn't cause a problem. But I do know some kiddos can't take Prevacid. It def sounds like something is bothering him, IMO I would start with switching to Simply Thick and getting rid of the cereal and see if that helps. Then make sure you are giving the Prevacid correctly. If that doesn't help maybe ask the GI about Neocate and see if you could try that. Just make sure that you give each change some time before you do something else. So then you will know what works and doesn't. Good luck! Andrea
Jan 08, 2009
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Welcome! I would have to agree with Andrea about the cereal. My dd is allergic to oats and rice. We tried the rice cereal in her bottles and it only made matters worse. This could be causing his diaper rashes also. If he is having a bad GI reaction to the cereal. I think Elecare has corn in it also and if your child has a corn allergy that and the cornstarch on his bum could be making the diaper rash worse also. These are all things that I would think of since my dd also has a corn allergy. We use triple paste alone on her diaper rash and usually clears it up in a couple of days if you really cake it on.

I think spacing out the meds will help with his reflux and my dd didn't do well on prevacid but is doing great on Nexium coupled with Zantac. Again just space them out.

Apnea is a whole other bear but it sounds like he could be aspirating. If he isn't aspirating he is probably doing what my dd, Adriane, did at that age which is stop breathing in order not to aspirate. She never got pneumonia from her reflux. She has had it but not because of aspiration but she would have up to 12 or 13 apnea alarms, not counting the times that she stopped breathing for 19 seconds and the alarm doesn't go off until 10, a night. Those nights were at her worst. The doc did all kinds of testing and said that she had a combo of central and obstructive apnea. You will probably want to see if they will do a sleep study on him and find out what the reason is for his apnea. Adriane would actually stop breathing to keep from aspirating the acid. Which is good and bad.

I hope this has helpd. Sorry it was so long. Good Luck! -Amanda

Jan 08, 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.
Thank you so much for the responses.

I am definitely waiting the 30 minutes with the meds. It's hard, but I do it. I do combine the Zantac with the others. GI doc said I could. I'll have to stop that.

I'll ask the GI tomorrow about Simply Thick. The oat cereal I use is soy free and I run it through the food processor first.

I don't really care for my GI because he thinks I exaggerate. My DH is a cruise ship captain and has been at sea for three months. I've been on my own. It's hard, but I swear I'm not crazy. I guess the apnea monitor and his Upper GI test have proved that.

Unfortunately, we had a sleep study and for the first time ever he slept through the night! I was aghast and also annoyed. Happy for him, but annoyed since he wasn't doing that at home. I realized the AC was extremely loud in the room and so cold. I asked the doc about white noise machines and he was against them. Well, I bought one the next day and Yianni has been sleeping! Go figure.

I guess we'll try the Simply Thick first, then if that doesn't work a new formula.

Thanks, mommies!

Jan 08, 2009
abbysmom
Andrea: Mom to 3 crazy girls!
Jackie (3/01)
Payton (9/03)
Abby (4/06) Prevacid 7.5mg (evening), MSPI, goats milk (currently trying to wean off Prevacid)
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If you aren't happy with your GI I would change. It took us 2 GI's before I found one that I liked and listened to us. Sorry to hear that you are on your own. Do you have any family near by? It is so stressful dealing with a reflux baby let alone doing it by yourself. Glad to hear that he is sleeping well at night! I have used a white noise machine with all three of my girls!
Jan 08, 2009
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
We have had several sleep studies where she proved me wrong. So frustrating. I kept thinking maybe she was too relaxed at home and then was forgetting to breathe but and the central apnea could have been part of that but of course they dismissed that theory.

Have they done any probes on him? PH or Impendance? What other tests has he had done other than the apnea monitor and the scope?

Jan 08, 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.
There is good news DH will be home in 8 days, and will be here for three months.

Yianni had an u/s to rule out pyloric stenosis at 3 weeks (done early because DH was leaving for the ship). He had u/s of the kidneys and head. Nothing significant. He had an upper GI where he refluxed severely all the way up the throat. They've tested his stool for blood and found it. That was when he was on Alimentum. So far no blood on Elecare. He had the sleep study on 12/01. Doc said he had periods of arousal. There were no seizures. I thought I was seeing seizure like behavior (doesn't seem like that anymore). I never got the full sleep study report. Maybe they'll tell me tomorrow. I assumed there weren't any problems because neither doc called.

I hate seeing my baby suffer; there are just so many variables, I don't know where to begin. I'm so grateful to have found you guys.

Jan 08, 2009
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Just remember that so many mom's have been where you are now. We all understand and won't discount what you are feeling and going through. We are here to support you and help give you our experiences so that you can make the best decision for your child. Every child is different and reacts differently to different meds and foods. It is a difficult thing to go through and to sort out but the ladies here are all great and very supportive. Come here anytime you need!
Jan 08, 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.
Thank you for your kind words. They are exactly what I needed to read. It's been a rough day as I'm sure you can imagine. Thank you again for helping.
Jan 08, 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.
Allergy

Follow YOUR gut, Momma.... I second (third?) the thought of looking for a new GI. It's important to have a doc you are comfortable with and that you feel is doing their best for your child. Remember, they work for you. YOU pay THEM.

I used to work on cruise ships so I know how tough it is to be away from home but I was never on the other side. It must be hard to be alone with a reflux baby.... I hope you have family or friends there to help.

Jan 08, 2009
engin117
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We suffered through the first year trying to find any infant formula even elemental formulas Meggy could tolerate.

Yes, I do believe there is a possibility of allergy to corn, especially with the diaper rash u describe.

Also, we discovered that Meggy gets a rash all over when drinking from latex nipples and sometimes even plastic.

I am sorry to hear about all the apneas and hope that they are willing to do sleep study or what ever it takes to find the cause.

Jan 09, 2009
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
My son has obstructive sleep apnea believed to be the result of reflux (the pH probe performed at the same time as the sleep study was done incorrectly, so they weren't able to confirm the relationship). During his sleep study he had 15 apnea episodes and 16 hypopnia episodes in 5 hours of sleep.

One of the crucial things to ascertain in your child's oxygen saturation during apnea episodes. We are fortunate in that Lorenzo's O2 sat remained above 90% throughout all of his episodes. When it falls lower than that, there is generally more concern about the long and short term effects of oxygen deprivation (although that concern seems pretty varied among practitioners and circumstances). I would definitely ask for a copy of the sleep study -- they can be very informative, although you may have to do some research to understand all of it. You can get a lot of info at www.sleepapnea.org, and there is also a forum there for pediatric apnea.

I had lots of other concerns about the apnea, and I'd be happy to talk more with you about what I found during my research. My email is cristina@mothersupportnetwork.com. Best wishes to you!

Check with your
doctor first!