Posted By Posting
Jul 28, 2008
susiegal
Mom to Charlie - cleft palate and reflux. Meds - zantac, prevacid, mylanta and reglan.
Looking for feedback
Hi - I'm new to the website and looking for feedback or ideas. My son Charlie is 8 months old. He has a cleft palate and Pierre Robin Sequence but our biggest challenge these days is reflux. He was a full term baby and weighed 7.5lbs. He was diagnosed at around 2 months after he started projectile vomiting. Briefly, he had a g-tube inserted at 4 months (moreso because of the cleft palate) and he is currently on zantac (0.8ml 3X/day) and prevacid (1 15mg tab in the AM, half a tab in the PM) and we are starting reglan this week. Also on alimentum 24 cal. formula. In the last four months he has only gained 2 lbs and has not yet doubled his birth weight (he's now 13 1/4 lbs). Does this sound typical? Any comments on the treatment/meds? I don't know anyone else who has been through this. He also got pneumonia a few weeks ago from aspirating and we are treating it at home with antibiotics. We see a GI doc and pulmonologist. Thanks.
Jul 28, 2008
stickybean
Oh no... I am so sorry to hear about your little one. I do not think I am of much help... but I know someone on here prob. is. I wish you luck...... Jacky
Jul 28, 2008
kmom
Worry Wart mom to
27 mo. reformed "happy spitter"
34.8lbs , 37in tall(oct)
Diagnosed A/R at 6 wks
Zantac until 1yr then Prevacid
Med free since February 08
peanut & egg allergies...still
Zoo Boo Trick-or-Treating (pic).
So sorry to hear about your LO's problems. "Typical" doesn't apply to A/R. Some kids just have sleep issues or vomit while others are FTT and require surgery. Your son's symptoms fit the bill for A/R. I don't think anything you described sounds unusual. Come back and talk to us. There are lots of smart, a/r experienced women (some men too) on this site. Good luck!
Jul 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
Jedd weighed 5lbs and 15oz at birth and at 6 months old he only weighed 12lbs....so, it's not too bad...LOL We struiggled due to a heart defect AND very severe reflux.

With the G tube and aspiratin issues...are thye lettign you do oral feeds at all????? I would ask them IF you should continue doing them since he is having the aspiration issues.

You can also work with a speech therapist to hlep with the aspiration issues. It needs to be an ST that is used to and very familiar with aspiration issues though so not jus tANY therapist will do. You need one with LOTS of exp. They need to be able to tell druign the oral feeds whether or not any aspirting is happening so they can stop the oral feed.

I hope you see a difference with the Reglan. It worked for us but we had to DX due to irratabliity sideaffects. Jedd was horrid while on it, we called him the screamin' deamon, it never stopped unitl about 3 weeks after we stopped.

BTW I know someone on another site that has Pierre Robin Syndrome and a cleft.
Jul 28, 2008
susiegal
Mom to Charlie - cleft palate and reflux. Meds - zantac, prevacid, mylanta and reglan.
Charlie has had lots of tests and scans and all are normal so far. He had a barium swallow study and since then we thickened his formla with thickener (vs. cereal). The consensus is that the aspriation is from the vomiting. He loves his bottle thankfully but lately we do only tube feedings because of the congetsion. Our GI doc told us to try the reglan for 2 weeks. I'm nervous but it does seem to work for some people so we are keeping our fingers crossed. The most frustrating thing is that he can't get his cleft palate fixed until he gains weight and the reflux is obviously a huge problem! Thanks for the postings. It is good to know others in the same boat. Susie
Jul 28, 2008
amber f
I can't add much but I wanted to say Hello and Welcome to the forum. You are not alone. Keep coming back with your ?s. I have learned more from the other parents on here then I have from my doctor. Good luck and I hope he puts on weight soon.
Jul 28, 2008
lanymama
Mom to Eddie 1/07 and Nicholas 6/08. Eddie allergic and refluxer now on cow's milk!!!! Nicholas also a refluxer on prevacid and breast milk. Mom on elimination diet AGAIN!!
Hi and welcomehopefully your little one will get some relief soon. What aorked for my son was a change in Meds. Prevacid didn't work as well as Nexium for Eddie although he is on high dose. I just wonder why the GI added an H2 aand a PPi instead of increasing the PPI. But he is doc but, maybe soething to ask. SInce he loves the bottle I would suggest giving him a paci while you are feeding him through the tube. What also helped Eddie was a formula change to Neocate or Elecare maybe possible food allergies this really helped my son. He actually did better on Neocate than BF. Hope this helps Elaine
Jul 28, 2008
nicholas'smom
Just wanted to welcome you. I too, am fairly new hear and have learned much from the people on the site. Can't say I have much to help you. please let me know how your lo does on the reglan. Our doc prescribed it for our son but I haven't tried it yet as I am just afraid he'll react poorly. Good luck.
Check with your
doctor first!