Posted By Posting
Jun 08, 2009
johnniesnewmommy
Reglan help
Oh good grief- The Gi has changed Johnnies PPI to nexium from Protonix because of the vomitting. We haven't even started the Nexium yet (can't pick it up until tomorrow) so he is still on the Protonix. Now for the last several days he has been bobbing his head up and down like a tick or something- I don't know if its just a baby thing. He seems to do it involuntarily but I don't know. I know there can be side effects for the Reglan but I don't know if that is one of them.
Jun 09, 2009
mommato3
Holden has been sticking his tongue out and does these weird tongue movements in his sleep. It freaks me out but my husband says he is just being silly by sticking it out and that the tongue movements while sleeping are b/c he is slept fed so he is mimicking that. I am paranoid about this drug but Holden has to have it or he aspirates. This drug trmendously helps him so I pray this gets a little better so we can stop it soon. I know the head movements can be a reaction to it but if you're like me I am paranoid of it. How long has he been on it? Holden has been on it since 6 weeks old (now at 6 months old). I truly believe this has kept him from surgery. Keep us updated.
Jun 09, 2009
johnniesnewmommy
He has only been on it for a month now. I am sooo paranoid about everything anymore. I feel like a crazy woman. They say just because your paranoid it doesn't mean there not out to get you! LOL He does the tongue thing too- Oh my- I am crazy! He has gained 2 whole pounds this month though- so I am really reluctant to stop the meds. Other than the weight gain - I have not seen any other positive changes. It's amazing he has gained anything with all the vomiting he has been doing. I am getting him to take about 12 ounces of formula in his sleep at night and he keeps it down most nights, but he wakes up in the am and vomits or dry heaves as soon as he gets up and it doesn't stop most of the rest of the day! I am hoping with the Nexium change that will stop. The ENT called and said the results of his allergy tests came back and they need to see me to go over them. This is after he said "Just call and I'll give them to you"- I hate that - then it just gives you something else to worry about until you can get in to see them. Sorry im now venting- and completely off topic!
Jun 09, 2009
mommato3
vent away vent away!! Let us know what the allergy results show. What type of allergy testing did they do?
Jun 09, 2009
mommato3
and woo hoo for the weight gain!!
Jun 09, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
Zack was on Reglan for a while with no side effects...the minute his dose was upped he started rolling his eyes back in his head...freaked me out and we discontinued it. Honestly...it was pretty clear that this wasn't a normal movement. I would just keep a really close eye on it and maaybe videotape it if you can and get your docs (and our) opinion. Babies do jerk and twitch on their own quite a bit, so sometuimes it's hard to tell. The tongue thing sounds like a side effect to me, but I would read up on it more. I loved the drug, too, but it's not for every kid...have you both tried erythro? It's a great alternative if it works for your kid (it didn't work for us)
Jun 09, 2009
johnniesnewmommy
no we havent tried erythro yet
Jun 09, 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.
Joslyn had bad side effects too. We were only doing a half dose of what we were told to do.

She was only a few weeks old when her pedi put her on it. (looking back we never would have filled the RX) She would scream all day long. Her mood was so different then what she was before Reglan and her face was broken out in a light colored rash/bumps. We had stopped Reglan not even 2 weeks after starting it. Glad we did too.. cause at her first GI apt, the specialist told us he does not prescribe Reglan to newborns or infants.

I am not against Reglan, but it is a very scary medicine that should be tried after all else fails. Ticks is one of them.

Good luck momma.... hope the allergy doc has answers for you.

Jun 09, 2009
mommato3
erythromycin didn't work for us. Not even a little bit. Holden does have documented delayed gastric emptying. I guess that is why it works for him as well. Even on Reglan his motility is still very slow. Holden was vomiting so much that he wasn't wetting diapers and stopped pooping. Reglan put a stop to that. Now that Holden is bigger he still pukes but no where near dehydration. My GI and new pedi (old pedi put Holden on it) said they don't use it anymore either except in extreme cases but they both were in agreement with me putting Holden back on it when Erythro failed. We are on the road to surgery without it and even with it surgery has been mentioned. Surgery scares me to death, aspiration scares me to death, and Reglan scares me too. It is ashame more motility drugs aren't available in the US for kids with motility problems. Tongue protrusion and tongue movements are a symptom but from what I've read thses would be present while he is awake. I guess I willl just keep a close eye on it.
Jun 09, 2009
adelines mom
they put adeline on reglan the day after she was born. she was on it for about 3 weeks. we had a baby nurse help us and the first thing she told us when she came through the door was to get her off of it. i fought hard and told them to take her off. she was conducting the orchestra in her bed. her little hands were going non stop while she was sleeping. she screamed too, couldn't ever figure if it was the reglan or colic, arching her back. we went back on it about a month later and just didn't really see that it was helping and got off again. know it really does help some babies. a year later i still wonder if something will pop up from the use of it. just made adeline's first appointment today to get allegeries checked. have been introducing a few new things at meals and she has been throwing up a large amount of mucus with formula. the ot recommended today we check allegeries. we are always worried about her aspirating too. did the barium swallow test a long time ago and she was protecting her airway. we have pretty much held her upright since birth!!!!!!!!
Jun 09, 2009
johnniesnewmommy
adelines mom, I completely understand. Johnnie is in the same boat with the mucus and the vomiting. Has had the mucus problem all along- we tested for C.F. but was negative thank god! He too is upright 24/7 so much so that the doctor keeps asking why he's not crawling at almost a year- HELLO - he has never been able to lay down - he wouldn't know what to do if you put him in that position. I get the results tomorrow of the allergy testing- im sure its not good because the doctor had to see us in person but what's the worst he can say- yeah he's allergic to everything?! I cut his dose of reglan back to 2 times a day yesterday and today and he hasn't done the head bobbing or tongue thing so we will wait. He was super constipated tonight though- so I had to up the miralax. Never ending battle. The Ped said he is doing so much better- and i am thinking to myself- only because I work my butt off to make sure he doesn't aspirate- or that when he does I get it cleared out before it turns into pneumonia. They don't get to see him vomit slime all over or turn gray because he has a mucus plug he can't clear. They just think he's doing better because im not calling everyday with a new crisis. I call you guys. Thanks- seriously I have no idea where we would be with out you all!
Jun 09, 2009
mommato3
johniesnewmommy
What does of Reglan is he on? Holden takes .7ml 4 times a day. I hear ya about doctors! What drives me crazy though is other people (my friends and family-with great intentions) that say oh he looks great to me! I am like yeah, but you don't know what I go through to ensure that happens. Yikes!
Jun 09, 2009
johnniesnewmommy
No kidding- or the ones who want to lay him down so he can learn to crawl -it's like are you insane- How about I give your diabetic child a dozen chocolate bars because everyone loves candy! He is on .8 ml 4 times a day
Jun 10, 2009
adelines mom
forgot to put this in last night .... when the occupational therapist was here yesterday she mentioned that a lot of her refluxes have a hard time in the heat. it has been really hot and humid here in VA. she said she still sees a difference even when the children are in the air condition. she suggested i get one of those large exercise balls. got one from target and we worked adeline on it yesterday. it was a hoot. she loved it. took pressure off the tummy. trying to build her core muscles up. had her lean front, back side to side. she was smiling and laughing. she also recommended we order hip helpers for her to help crawling, one year and not there yet. they are custom fit little pants, almost like biking shorts. a group out of va beach, va. makes them, they are on the internet. she said she uses these with a lot of her downs kids trying to crawl. going to try. the early intervention has been really helpful coming to the house. adeline is on the miralax too and it helps. we work hard, don't we? there was a really good chapter in the reflux book about dealing with family and friends.
Jun 10, 2009
mommato3
That is so funny you mentioned those little pants and excercise ball. Our therapists gave a pair to Holden (they look like little spandex things that help them keep their legs in to learn to crawl and help with tummy time ) and our physical therapist started Holden on an excercise ball a couple of weeks ago. I agree how much easier on the tummy it is yet it gives them the opportunity to work some muscles. Holden is considered low muscle tone as well although after all his physical therapy, he has greatly improved. He has improved tremendously since using those things. Early intervention was the best thing that has happened to our family. Johnniesmommy-Have you tried to get Johnny in? Every state has one and the therapists come to your home.
Jun 10, 2009
johnniesnewmommy
yes, we are in the process of getting the evaluations done so we can get started. It just takes forever to get anything going. How do you do the exercises with the ball? That is something I could start on my own while we are waiting. Oh and I posted a new topic with his allergy results- I am going to need some serious help trying to figure out what to feed this kid- he is allergic to almost everything!
Check with your
doctor first!