Posted By Posting
Aug 24, 2009
libsmom
Marcie Williams
Daughter not responding to meds
Hi everyone! I am new to this forum and so glad I found it! My daughter Libby (6 years old) has had stomach problems since she was born. It has just gotten worse in the last 2 years. She was put on Previcid once a day and no response and then twice a day and no response. Then they switched her to Nexium once a day. When that still not help at all, our Ped. sent us to a Ped. GI. He was concerned b/c she was not responding to any of the meds and did a scope the next day as well as the probe. The scope showed significant acid reflux as well as some damage done to her esophagus. They biopsied some places as well. We did the 24 hour probe and the Dr.'s office called the next day saying that the 24 hour probe only showed acid reflux during the day, not while she was asleep. They said that the biopsies came back showing severe acid in them. They bumped her to Nexium (40 mg) twice a day and said to try it for 2 weeks and let them know how she is doing. Well...we are still not any better. It will be a full 2 weeks on Friday so I will be calling the GI then to let him know that it is not working. Does anyone know what happens now? I feel so badly for my daughter. The acid comes up into her throat and up into her nose and sometimes into her mouth. He didn't really say what they would do next, but I am just scared to death as to what else there is to do for her. Any suggestions would be great!
Aug 24, 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!
There are some other things out there - carafate (caracreme) which coats the esophagus, using Maalox or Mylanta for breathrough pain during the day, Pepcid Complete, adding in an H2 blocker until the acid gets under control (Tagamet, Zantac, Axid, or Pepcid), probiotics, prebiotics, diet changes, etc.

Have the biopsies come back yet? There may be some answers waiting in those results. Also, most of the meds need to be given on absolutely EMPTY to get any results (2 hours after last meal/snack, and at LEAST 15 min before eating again.) Also, no other meds within 2 hours on either side of the dosing.

As for diet, there are a lot of ways you can alter her eating. I'd ask your MD if you could get a referral to a nutritionist to get a good idea of what may help, but you can find a list of the acidity of foods on the internet. Small, frequent meals may also help - the acid has a bit of a buffer when it's used to actually digest food.

Some other things to consider are alternative therapies. TCM, acupuncture, acupressure, craniosacral therapy, naturopaths, etc offer more holisitc approaches and may come across something that Western medicine has overlooked. HUGS mom - we're here for you!

Aug 25, 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
Two weeks is a very short amount of time to wait to see if the damage will be healed. I'd wait a month or so....you should see a difference then.

Most of the time you can see small differences within 2 weeks but it can take up to 6-8 weeks to see the full affect of the drugs.

I'd give it some more time. I know, hard to hear, but I would. with damage, it takes more time.

Aug 25, 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.
MALOXX or MYLANTA!! At least for now. I think the previous posters gave you some good advice, but I would stress diet changes for now. efinately see a nutrit. and find out about intolerances. HUGS
Aug 25, 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
Ditto to all of the above. My other recommendation is to move her to Zegrid. That all of the meds are getting into her with out worring about timing. Plus you can add Mylanta right to it for extra throat coating. You cant do that with any other PPI. It is newer to the market so your doctor may not know a lot about it, but dont let be their excuse. They can get educated. Go to Marci-kids.com and click on Zegrid info on the right. If they wont presribe it to you then have them switch you to prevacid or prilosec capsules and order the Buffer Babies/Caracream directly from Marci-kids to compound your own. It was absolutely with out a doubt the best decision I made for my son. It made a night and day difference.
Aug 25, 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 forgot to add that if you have not taken her to a pediatric allergist, I recommend that you do so. The studies have shown that the cause of most older children's (over the age of 2) reflux can be linked back to food allergies. Eliminate the triggers and you eliminate the reflux. If you dont eliminate them, the meds can only help a little. At her age the blood work will be very conclusive which is great for her. It is a simple blood drawn and that is it. Keep us in the loop with what you find out. - Karen
Aug 25, 2009
libsmom
Marcie Williams
Thank you all so much! It is the worst feeling not to be able to help your child feel better. We have been monitoring her diet and seeing if anything in particular was triggering it. Nothing has stood out. It will even start in the morning when she has had nothing to eat. She went to a Ped Allergist when she was 2, but it show up anything. That is good to know that they can do blood work to see if there is a food allergy. I will definitely ask the GI about the Zegrid. My mom, actually just started taking the same medication. Should I give her Tums or Pepto at all? That used to give her relief for at least an hour. I have not given it to her since she has been on the Nexium b/c I didn't want it to counteract it. The first week on Nexium, the reflux wasn't as bad, but now it is back with a vengeance. Maybe the Nexium just masked it the first week. I cannot tell you how relieved I am to have found this forum. I have felt so alone in this! Thank you again for all of your thoughts and imput!
Aug 25, 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
If you saw a difference with the Tums and Pepto added in, by all means do them!!! Just make sure not to give them at the same time you give the reflux meds.

I'd do the allergy testing over again. There are much better ladies on here than me about allergies, but, it can be unreliable on little ones until they are older.

Check with your
doctor first!