Posted By Posting
Oct 08, 2008
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
Zantac is back & other news from GI appt
Adriane had another GI appointment yesterday. He prescribed Zantac again. Lots of it, 3 ml twice a day! I know that it is weight sensitive but it seems like a lot. He wants us to do it for a while and see how she does. He is hoping to get us through the rough times (winter, colds, asthma flares and teething) and then see how she does in the Spring again. I know that my reflux has been terrible lately so I can imagine what she is feeling like.

She has lost 2 lbs in two weeks. That isn't a good sign. She has a little to spare and he said that as long as she doesn't lose too much more then we will be alright. He doesn't really want her falling below 19 lbs. for her height. She is 33in. The problem that we have is that she is out of formula. She couldn't take neocate anymore as of April or so. So, we are at our last option with her digestive system and tummy. He said that next option if she starts losing more weight is Intraveneous feedings. This is what we have avoided for 15 months. We are just praying that her belly matures and can eventually take something else.

He isn't happy with the allergist either. So, he has dictated a letter to the allergy clinic asking that my allergist and a doc that he knows has dealt with his patients a lot will look at her chart, if not see her. If she looks at it and decides that the best option is to go to Colorado then that is what we will do. He wants to try one last doc before we spend the time and money going up there. Even though he feels like a team of docs would be best for her. So, we wait!

Oct 08, 2008
amber f
Here I am complaining about meds. You've got a lot on your plate. I hope the IV fluids isn't necessary. Good luck with the new doc. I hope they are more knowledgable.
Oct 08, 2008
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.
oh no ... i am so sorry to hear about the weight loss. I hope something is done soon!
Oct 08, 2008
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.
Good luck. We are thinking of you.
Oct 08, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
I copied this info. straight from the zantac website:

Pediatrics: Oral doses of 6 to 10 mg/kg (kg= 2.2lbs) per day in 2 or 3 divided doses maintain gastric pH>4 throughout most of the dosing interval.

This is the link: http://us.gsk.com/products/assets/us_zantac.pdf

Maggie used zantac efferdose tabs. At 6mos she was taking 75mg per day (3-25mg tablets). When she was 8mos she went back down to her normal dosage of 50mg a day.

The dosing for the tabs and syrup is the same as the above from the website.

Oct 08, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Waiting is no fun! I pray she will take something for you and gain! Hugs!
Oct 09, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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EEk! SO sorry! I think about you guys a lot since our LOs are the same age. Watch her for signs of headache on that dose of zantac...Elyse's GI said we could go higher than her 2 ml dose but that it could cause headache. We also noticed sleeplessness! She can't do neocate? What is she eating/drinking?
Oct 09, 2008
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
Sharon, I feel the same way about the girls. They are so close in age. I think about you guys often. Thanks for the tip on the meds. I hope that we don't start having the headaches but if I see a lot more banging of the head I will probably know what it is from. Adriane was on Neocate from June 07, when she went from over 8 lbs to under 5, until April of 08. She got a stomach virus, we all got the lovely thing, she couldn't stop having the diarhea and vomiting and she was only on Neocate. At that point the doc had us try RCF and add a carb to it. Expensive and a pain. We don't know why she can tolerate it since it is soy based but the doc says that it has something to do with the chemical compound. Almost like it cancels each other out or something. He has some technical reason and i don't know what it is. Anyway, that is what she is on for now. It was either that works well enough in April or we would have been doing IV feedings then.
Check with your
doctor first!