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GERD (Acid Reflux) Community
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213739 tn?1215489609

PLEASE HELP...3 year old on Nexium

Hi!  My son has had severe GERD since he was about 6 months old. He also has developmental delay.  We started on Zantac, went to Prilosec and then Prevacid. On the Prevacid, we had a scope done at about 18 months due to the fact that he was up all night coughing, crying all of the time, etc. that showed severe esophagitis, an ulcer, lots of erosion 'Bad spots' as they called them, and an inflamed dueodenum.  They immediately put him on Nexium and he's been on adult Nexium 20 mg three times per day for the past 21 months.  He does not eat solids. He drinks Pediasure and will eat babyfood bananas but not consistently.  At his 3 year check-up, I asked his Ped. if I could wean him off of the Nexium. She said not until he was eating a wide variety of solids.  Well, at 3, he started preschool through the school district so he could continue his therapy. They were giving him a Pediasure for a snack so when he would get home, he wasn't hungry and wouldn't eat so we were skipping his noon Nexium. He seemed to do great doing that so I started weaning him off of his morning dose.  Again, no problems.  Then, I gradually weaned him off of his dinner dose and again, no problems. It's been about 3 months now and since we started weaning and about a month to a month and a half since we've been completely off the Nexium. My question is, how long does it take to get it completely out of your system?  He's been very fussy the past couple of days and screamed 3 night ago from 10pm until 2am for NO reason but then slept fine the last 2 nights .  However, if I would go in and hold him the night he screamed, he would stop so I don't know if it was just separation anxiety or if it was the reflux.  I'd almost like another scope done to see how his little system is doing being off of the Nexium but I don't know if they will do that or not.  I'm a firm believer in medicine when it's needed but I hate having my kids on a bunch of medicine if they don't need it.  What do you recommend?  Was it safe to wean him off or should I put him back on?  Any thoughts are greatly appreciated. Thank you so much for your time.
9 Responses
168348 tn?1379360675
I am a mom, like you, and can only give you my opinion based from my own experiences and those of other parents on the community.

It took me about 1.5yrs to do a successful wean off Prevacid for my son, who like your son could not eat solid foods!!!! We'd get down to 7.5mgs (vs. 30-45mgs) and then it would flare worse than before.

The one thing one must keep in mind is a rebound effect.  If the med is weaned too soon the reflux can come back worse than before and take weeks to months to calm down.

What I did was give mega Mylanta which was ok with my Pedi GI and if that helped then I knew it was reflux.  The crying for us never stopped when being held so it is really hard to tell in your situation.

Did they test for eosinophillic allergic esophagitis via biopsy samples?  That is what I'd be very concerned about.

Also, has he been tested and seen by a really good allergist?

Just some thoughts.

WELCOME TO THE COMMUNITY!!!!
213739 tn?1215489609
Hi! We have not seen a really good allergist.  We do see a DI doc at our Children's hospital and he has biopsied every time we've had a scope.  He's never mentioned  eosinophillic allergic esophagitis and I've never known to ask about it.  Like I said, they do biopsy.  I weaned him pretty quickly off of the nexium so now I'm worried.  I did buy the PH testing tape tonight and will see tomorrow how his is on the paper. I don't know how accurate it is but it's worth a shot.  Thanks so much for your input and I'll ask the GI doc. next time we go.  Have a great night!
168348 tn?1379360675
most likely that is what they biopsied for in the scope, but do ask.

the paper is really intereesting; something new to help .. my son is now 9yrs old .... they didn't have that "back then" ...

pls keep us posted.

Cheryl
213739 tn?1215489609
Hi! I meant GI doc in the above e-mail!  I was tired and ready for bed!  My hubby and I tried the paper last night and we were both OK- neither of us experience any reflux either.  I did my daughter this morning and she too was fine.  I am still trying to get a little saliva out of Jaden's mouth which is proving to be tricky.  With all of his sensory and feeding issues, he isn't very compliant on letting you in his mouth.  He does chew on everything (but food) and usually drools so I'm waiting to catch some to test him!  Sorry, TMI!  I'm assuming they biopsied for that too but I will definately ask them. Thanks again!
168348 tn?1379360675
Two of my children were in speech therapy for years bcz of the muscles not developing properly bcz of late intro of solid foods .. keep that tucked away, too, as you move fwd.

Is your son doing any sensory integration therapy (oral motor) to help him?  Another ? to ask ... they work with washcloth, etc. to gently stimulate sensory inside mouth, etc. from what I understand.

Cheryl
213739 tn?1215489609
Hi Cheryl,
  We knew from the minute Jaden was born that something was wrong. He was blue, limp, and not breathing.  I was a Parent Educator for ages birth -3 for the school district and knew instantly.  I kept a close eye on him and by 4 months, we had him in First Steps which is Missouri's early intervention program.  Thank goodness I knew a lot about it from my job!  By 4 months, he was receiving Speech therapy twice a week for 60 min. each time, Physical Therapy twice a week for 60 min. each time, vision therapy as there were many concerns about his vision the first year and a half, and OT 60 min once a week.  We continued this and actually added sessions until he turned 3 when the intervention program rolled over into the school district. Now, he is at our school district preschool where he receives 30 min. of special educator every day, 30 min. of speech every day and 60 min. of OT and 60 min of PT per week. They do work a lot on sensory with him. We also do out of pocket for a feeding therapist who comes to our house once a week and is fabulous.  She also works a lot with the mouth such as using SCOPE on a nuk brush, a vibrating mouth massager, etc.    

He never had a suck from the beginning. I nursed the first 12 months and would let down and he would swallow so I had to pump every 3 hours. Finally, at 12 months, he got a G-tube. We tried every kind of bottle, cup, etc.  We even tried the finger feeder, the Haberman, you name it...He now is pretty much off the G-tube (only use it for water and medicines) and he drinks out of a dolphin with aquarium tubing that I get from the therapy catalog talk tools.  He didn't sit up until he was about 18 months, he crawled at exactly 2, and didn't walk until he was a little over 2 and a half.  He has been diagnosed with apraxia which causes all of his speech problems.  He is smart as a whip though and understands everything. Today, he was in the bathroom at the sink, my daughter called him to come play downstairs so he walked out of the bathroom, looked back, realized he left the light on, went back, turned it off, and went downstairs.  He follows 2 adn 3 step directions without problems, he just can't get anything out in terms of communication.  

After our last scope, they did an esophogeal motility study to see if Jaden could swallow and he didn't pass.  His esophagus is contracting irregularly. Normally, the esophagus does multiple contractions to move the food down the esophagus and Jaden's is doing one simultaneous contraction and will then lodge the food. The doctor (GI) looked at me immediately and said "ABSOLUTELY NO SOLIDS."  I asked if he would outgrow this and he said time is on our side but he does have kids that are 15 and are still on a complete liquid diet so we don't push the solids as much as we are pushing different flavors of foods and textures that dissolve that can be easily swallowed like liquid.  OK, Sorry, I didn't mean to write you a novel, sometimes it helps to get it out!  Thanks again for the ideas and for listening!
168348 tn?1379360675
OH my goodness.  Your son was born to you as his mom for a REASON!  

You have been through and continue to go through so much; you can really help others on the community as we grow here .. to help them with the oral issues ...

I hope he outgrows this .. do they think there are strictures/scar tissue built up at all?

And the funny part is I had to push for a speech test for my 2.5yr old at the time as I was told I was overeactive parent .. turned out she was 80% unintelligble AND IN SPEECH for 8yrs .. today she is 15 with 100% success!!!!!

She also had bilateral vocal cord nodules that were aggravated for 2yrs with reflux and was in speech for that, too ... finally a yrs worth of Prevacid has healed those, too.

NOBODY really understands this to any degree unless we, the parents, are their advocates!

C~
213739 tn?1215489609
I completely agree that no one gets this. Jaden is old enough now that I get horrible looks at restaurants when I don't order him food and he just drinks milk.  He does throw fits and although he does not have any visual features that make him look like he has delays, he does have the delays and I get the looks from others like "Can't you control him" or "he's old enough to not do that."  If they only knew.  I've started speaking out a little bit more.  Last summer when he wasn't walking yet, our pediatrician gave us a handicap sticker for the van as he is heavy to carry and if he's throwing a fit, it's even worse.  I do not abuse it and only use it when there isn't a cart rack to park by.  One lady got out of her car and said to me "Some people just don't care if they use the handicap spots so those of us who need them can't."  Believe me, she was walking way better than Jaden as he couldn't walk at all.  I was so angry.  I stayed calm and nice though and said "My son has delays and can not walk."  She said "Do you have a handicap sticker?" I said "Yes, I do, it's hanging right there."  She did slightly apologize but I've learned, from Jaden, that you just can't judge others.  I wasn't judging her for having one and she was walking just fine.  I'm sure there was a reason.  

Ok, off my soapbox.  They said he has slight scar tissue but nothing that should pose a problem.  I can't believe you had to fight that hard for speech therapy for your daughter. I'm sooo thankful that they gave Jaden all of the therapy he needed without a fight.  Speech at the beginning, when he was 4 months old, was mainly feeding therapy and as he got older and wasn't producing any sounds, it turned into speech and feeding. Our insurance company has also appoved 60 visits per year for home speech and feeding. This is above and beyond what the school district is giving him for speech. I will not let the school work on feeding as no one has training.  

I'm so glad to hear your daughter is going so well know.  That is so awesome to hear.  She too is very lucky to have you as a mom.  I truly believe God gives us our kiddos for a reason.  We've fought for them and continue to do so. Like you said, when they can't talk, we are their only advocates.  I'll help out as much as I  can on this forum.  I'm not a doc- my Master's is in education but I'll do what I can from my experiences.  With my daughter in kindergarten summer school and my little guy in summer school too, it gives me some time during the day to be on here!  Did I tell you I'm pregnant with #3?  I'm due in November.  I'm very excited but very nervous.  We had a miscarriage in December at 13 weeks 4 days and between Jaden and the miscarriage, I am nervous but also know God won't give me something I can't handle.  Talk to you soon!
168348 tn?1379360675
WOW that is fantastic news ... CONGRATS ....

Here is a link to the November Babies '08 Community.

http://www.medhelp.org/forums/show/247

Your wisdom and knowledge can only help others here so much!

Cheryl
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