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Oct 28, 2008
3blues21pink
DS #1 (7/05) - Just ReDX'd Refluxer! Prevacid Solutab starting 4/8/09. Lots of food and environmental allergies. Autism, Sensory Processing Disorder, Speech Delays, Developmental Delays, Severe Muscle Tone Weakness.
DS #2 (1/08) ReDX'd refluxer. Milk and soy allergies with Soy Lecithin allergies. Oat milk drinker, Rice protein powder, DHA, and vitamins added for bulk and needed nutrition. Weak muscle tone, slightly developmentally delayed, SPD confirmed.
9 Months And UGH!
Having had a son with reflux that did stop around 9 months, I was so hopeful that little man would follow his big brother's example. He's now at that age so I thought we would start the Prevacid wean. First rattle out of the box, day one, first bottle after the small wean (just took half the pill), he refluxed! Sigh. I let him tummy cool down and tried again another day, same thing. He's not ready. That's fine. His is far worse than his brother's was, so it's not surprising at all. I was just hoping..... We do have an appointment with his GI doctor about his reflux (his last one ended up not about his reflux but about his other gut issue that was going on at the time). So we will see what she has to say.
Oct 28, 2008
amber f
I was unable to wean Nolan at nine months but now at a year I have cut out his evening dose. Just want to throw that out to you. It is so heart breaking when you have an unsuccessful wean. Hang in there. Try again in a few months.
Oct 28, 2008
jedd'smommy
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 cuttign ONE dose caused that reaction I'd wait at least 6 more months before trying to cut again. fro use the benefits far outweigh the risk of coming off of meds.

Instead of cutting out all of Jedd's meds we weaned form a PPI to an H2blocker. We did both for a whiel to cover him all day and just recently took the dive into just doing the H2.

We will stay on the Axid for at least antoher 6-12 months before thinking about dropping it. Just what we are gonna do.

We dont' want to take Jedd completely off meds untiol he can tell us what is going on when he is not on them. Right now his expressive language is delayed, hence the older age of weaning. If his language wasn't as delayed we coudl propbaly have done it earlier.

Oct 28, 2008
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.
Any chance of your second son having food allergies as well? Also, my son sounds a little like your #1 son (food/seasonal allergies/reflux/sensory issues, etc.). How did you come to realize he had autism? My son is so different from my daughters at 2 1/2 & his behavior can be horrible. Plus, he is so picky about everything. I'm not sure how to separate the behavior from the illness. Ellen
Oct 28, 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!
Don't get disheartened. I started trying to wean my dd at 6mos. That didn't work. We tried again at 8mos and were able to cut down a whole dose. Then at 11mos we were med free!!! It really depends on the baby. You might try again in a month and have success. You just never know.

Just keep in mind that they still may spit up and reflux. The important thing is does it hurt them. If you cut the dose and he seems in pain, then it's not time, but if he refluxes without hurting, it might be ok.

These of course are my opinions. When is your GI appt?

Oct 28, 2008
3blues21pink
DS #1 (7/05) - Just ReDX'd Refluxer! Prevacid Solutab starting 4/8/09. Lots of food and environmental allergies. Autism, Sensory Processing Disorder, Speech Delays, Developmental Delays, Severe Muscle Tone Weakness.
DS #2 (1/08) ReDX'd refluxer. Milk and soy allergies with Soy Lecithin allergies. Oat milk drinker, Rice protein powder, DHA, and vitamins added for bulk and needed nutrition. Weak muscle tone, slightly developmentally delayed, SPD confirmed.
Blueleopard, Yes, DS #2 most likely has a severe milk/soy allergy. It took a hospital stay due to severe dehydration to figure that out. We did every test in the book because he wasn't presenting as an allergy kid. Now we are pretty sure (working with our GI doc) that he has a milk/soy allergy. We have him on Neocate right now and his gut issues, due to that, cleared up. As for the Autism, it took a while. I thought, long ago, that he had Autism. But no one else thought it. They all said he was fine. He just didn't want to talk (at 2 his language was so advanced that his ped said he had never had a child in all his years of practice with such advanced speech, now, at 40 months, he speaks like an 18 - 24 month old). He is fine, he's just a little clumsy. (he can barely walk across the room without tripping over things like air!) We have since found out that he has very, very severe weak muscle tone in his entire body (not uncommon with kids that have autism). Physically he is around 18 months old, inside. This is why he can't potty train. You would never expect and 18 month old to use the potty, yet we were trying to get him to do it before we knew. I finally got fed up and asked my husband if he would be opposed to just ruling things out. He said no, go for it. So we set up an appointment with a pediatric neurologist. We got a definite Autism DX that day. We walked out with one. Then we got a second confirmation by his development psychologist (she's helping with his social issues - not that he's not social, but some other things). We now have him in OT, PT, ST, behavioral therapy and nutritional therapy. We are starting to see some very nice progress. Get the right people in your corner, that's the biggest thing. Without them, you will not go anywhere. We have DS #2 on the radar with our developmental neurologist due to his already having some issues that are on the spectrum. He's too young for DX (9 months old), but we are keeping an eye on him to make sure he is caught early if he ever shows up on the spectrum. He does have some other neurological issues that are yet to be DX'd. Maggiemom, We have our GI appt next week.
Oct 28, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
9 months was my hope too, but it didn't happen. Now at 10mo we are trying to at least get him down to 15mg vs 30mg, but it has been tough so far. I hope you gi appt goes well!
Oct 28, 2008
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!
Allie's case is mild, but even the GE said to wait until 14 months to start the wean (get past the milk and table food barrage) So here we are at month 13 and still not able to even cut out the Pepcid, much less the Prevacid....
Oct 29, 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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Hi, just chiming in to tell you our experience...we switched from PPI to H2 blocker around age 9 mos, stayed on 2 doses until 13 mos, then cut out the night dose. We recently unsuccessfully tried to cut the morning dose and i will wait a couple months to try it again. Like someone else said, if he is still refluxing but it is not causing any pain or discomfort, it should be okay to downgrade or wean slowly as long as it is okay with his dr. Elyse was still puking profusely when we switched down to zantac but we felt (and her GI agreed) that she no longer needed the stronger med. You can try different things because over time his needs will change.
Oct 29, 2008
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.
I have to run.....another Dr. apt., but wanted to thank you for the info. on autism. At least I know what I'm looking for. Keep us posted & watch those food allergies - they really contributed to our son's reflux/e.e. diagnoses. Ellen
Check with your
doctor first!