My daughter wakes up with tears in her eyes each morning in the last 7-10 days saying she is hoping it will be a good day... When I ask her why is she concerned she is telling me she does not think she will be able to eat breakfast. Other times she starts crying when hears the sounds of microwave or fridge and knows meal time is coming. She is afraid to eat. Last evening she vomited 2 times, and this morning she could not eat, slowly drank a glass of milk and that came right back minutes later. She had little lunch and very little dinner. At bedtime, 2 hs after dinner she started crying thinking she would vomit. It went away though and now is sleeping... I am terrified that a new day starts after this night. I don't know how to help my child tomorrow.

history:
4 ys of frustrations after Delissa was born... - feeding refusal since 4 weeks old, fed her in her sleep - daily episodes of vomiting - never slept more than 40 minutes (day/night) without screaming - as a toddler poor appetite, would not touch food, want to be fed but she would always forget to swallow, one spoon of soup would just stay in her mouth for minutes... - multiple throat infections a year, or viral infections that always mean miserably nights when I cannot get a second of sleep because I carry her through the house trying to stop her from her constant crying - tonsillectomy at 31/2 that lasted over 5 weeks to heal, no dr had explanation why - just diagnosed with GERD/LERD at 4.4yrs and was started on Prevacid 30.

Awwww, that is awful. It took them that long to diagnose her? :( How long has she been on the prevacid? Has she seen a GI specialist?

Welcome! :hello2:

I am so sorry to hear that your little one has had such a rough time!

How long has Delissa been on Prevacid?
Is she seeing a specialist?
Is she scheduled for any type of feeding therapy? She sounds like she could definitely benefit from it.

Poor baby. :(

Keep us updated. This is a wonderful website. There are lots of caring and supportive mothers and fathers here.

Awww, poor baby I'm so sorry that your little girl has gone through all that she has. It just isn't fair that these kids have to suffer. Has the Prevacid seemed to help her at all? I sure hope things start looking up for you and your daughter! Please keep us posted!

Thank you everyone for your replies…

Delissa has the GERD diagnose today only because I had Nicholas. Nicholas stopped feeding at 4 weeks just like Delissa did but because I could not feed him in his sleep as I had done with her, I took him to a new ped right away. They admitted him in the hospital for tests and diagnosed him with silent reflux, aspiration, dysphagia. When I told this ped about his older sister’s problems, we were sent with her to a GI who started her on Prevacid 15 immediately. This was several months ago.

How she has done on Prevacid15: I thought I saw an improvement in her sleep and appetite after starting Prevacid15. She had been very sick these past 21/2 months with strep, respiratory and stomach viruses and even required hospital admission twice in a month for dehydration. Apparently the reflux is getting worse with any virus. However, as soon as she recovered from these sickness’ her appetite improved back. But because of so much happening in these last 2 months, the GI performed an endoscopy 2 weeks ago she had that confirmed GERD.

Days ago after getting biopsies results back (showing chronic inflammation of esophagus and chronic gastritis) the GI put her on Prevacid 30. I don’t know how long would take for the higher Prevacid dosage to make a difference… right now she is not happy to see food, not willing to try it, even thought she was going to vomit when she saw me coming with Prevacid dose this evening.

Regarding feeding therapy, it was mentioned this week when we saw the pediatrician. I will ask for it next week when we go back to the GI.

I'm so glad you found us, Angela! This forum has been an amazing support system for me.

Sounds like you have had quite a wild ride...and a tough one. I hope that things get better soon!

Please keep us posted, okay?

Welcome. There is a lot of support to be found here. I hope the med increase helps. I would push for getting her into some feeding program

How is her stomach motility? A lot of these kids have delayed gastric emptying, and need a motility drug. This is confirmed with a milk scan.


FOr us, the increase in prevacid dose took 2 weeks. To note, it can cause abdominal upset and nausea, so that could make things worse until she gets used to the drug (which took a month for us)

Hi Jojo, motility is very slow, when she throws up I see food she ate 8 hrs ago. Prevacid15 did not cause her nausea when she was started few months ago. I don’t know if the doubling the dose would do that.
What motility drugs do you know other than Reglan? I read about Reglan’s side effects, sounds scary that some can be permanent.

Welcome to IRD!

I too have children who were diagnosed as a result of the problems my youngest had with GERD. Our youngest hit FTT and many complications (including total solids aversion from introduction and only started to eat solids at the age of 14 to 15 months of age when we started medicating him). My then 3.5 year old son who I had been complaining about to the ped for years (since birth) for vomitting and food aversions was then diagnosed thanks to his younger brother. Hence I have 2 confirmed refluxers in the house on both prevacid and zantac and my eldest definately refluxes as well, but is medicated OTC presently.

Curran (my middle son) would vomit at the sight or smell of food. He was so obviously hungry and would go to the table and sit for up to 30 minutes before a meal only to vomit once it was placed in front of him, even if it was a favourite. This happened forever it seems. With prevacid we do not get as many pukes anymore and he has turned into a silent refluxer anyway. It still happens on a refluxy day where he will cry at the sight of food, but although he is a little beanpole he intakes really well and is no longer afraid of food. He has been on meds for one year come May.

Although Curran has not needed feeding therapy we have gone through everything with Iain in terms of OT, dietician, and feeding skills psychologist. It can help a great deal, not only for the child but for the parents as well. We have so much guilt (maybe I am doing something wrong?) and so much stress and anxiety (why won't they just EAT? How can someone refuse food?) and sometimes the professionals do come in handy. An OT here just determines a swallow and then you are passed to a psychologist for feeding behaviour. It may be different from where you are but I would ask. The psychologist was amazing and very helpful. We graduated from the program in January of this year.

The esophagitis is the problem. Once this is under control she will be better to eat, but still may be fearful. Prevacid usually takes up to 2 weeks to kick in but it may be less time as she has already been receiving it. However, it depends on how inflammed she was too and may take a month or more to really make a difference in terms of healing. You may want to ask for some zantac to run alongside of the prevacid for now. NOt all GIs or peds will do that as they feel it is redundant, but it is not. We use both meds and it has been great for breakthrough reflux. It also has given us an opportunity to dose when we need something extra for the boys.

The fact that she has been so sick lately does not help. GERDlings get sick quite a bit and seemingly take longer time to recover. Illness makes the reflux much worse so maybe you will see some difference once she is over all this.

{{{hugs}}} It DOES get better. I know it seems awful right now having 2 refluxers and no end in sight, but it does become manageable in time. Reflux flare ups are common too, but you will look back once things are on a good path and see how far you have come and wonder how on earth you did manage with it all so very bad.

Thank you so much everyone for your replies… knowing I am not alone in dealing with life with 2 GERD kids helps a great deal.

Like Curran used to, Delissa also vomits at the sight/smell of food in her bad days. Other than that she vomits when she cries (no exceptions) and sometimes at the table, while eating, and is unable to explain why it happened.

Something new, she started going to a preschool last summer and in the beginning she vomited for a few days right when she entered the class, without even starting crying yet. Just becauseshe was upset to be there. It went away, thankfully, after a week

It is good that Curran’s intake is good now, at least you don’t worry about weight loss. How long did it take for Curran to start getting better after Prevacid was started?

I will ask for Zantac, no idea why it was not prescribed to her when it seems to be the first choice.

How about motility drugs? From what you know, is there anything that can be given “as needed”, in their very bad days? And that you can stop giving when they get somewhat better?

Prevacid is a very, very good drug. Between zantac and prevacid I would indeed chose prevacid if I could only have ONE. However, zantac has it advantages as well. We started Curran off on zantac and it made a difference (it is often the drug most children are started with) but he needed something stronger, hence the prevacid. What I am suggesting is that you keep going with the prevacid, but also have some zantac running with it for those really refluxy days. It helps. Often a GI or ped will see that you need only one or the other when both running together is apparently becoming more widely accepted. We use zantac on really refluxy days here now, but we used to run with it all the time in the begining until things settled down with the boys. During flare ups it comes in very handy.

Although Iain has DGE he is not presently being medicated for it. I have no idea if Curran has DGE or not, but I would suspect he does from past history. Our ped does not want to put Iain on another med right now and thinks that the meds out there are not very beneficial. I disagree as I see many on the board who use erythromycin or reglan, doperidome, etc. with success. It is not something you give once in awhile though, these drugs are a constant everyday medication to help with motility. If you wish to address DGE meds further it is best to open a thread on it in the DGE forum so that others who do have experience with the meds can help with that.

Curran still pukes up from time to time and has done so at school. Sometimes it is because he was refluxy to begin with other times I think stress brought it on. Stress can make reflux worse, as illness also can. The school he went to had a policy that if they puked they went home, even if they were fine afterwards. This I will have to address with the school when he returns (I pulled him from JK in December due to reflux and chronic bowel issues. Long story)

They can not necessarily tell you why it happens, only that it hurts and that they did it. Even my 6 year old who is refluxing has trouble putting it into words. It is clear he feels it coming up and then he swallows it. He feels his mouth is full of "water" a lot (an is constantly wiping his mouth now, obsessively so) and says his throat hurts, like fire sometimes. It tastes like he "threw up" when it happens and he does not know why it comes up. That is a 6 year old view on it. Curran simply tells me his "tummy and throat" hurts and then I can catch him refluxing.

As far as how long it took for the prevacid I would say it took about 4 days for Curran, but he was already on the zantac then. We used it alongside for a few months to make sure everything was good. Prevacid on its own can take up to 2 weeks to kick in, but again her healing may take longer due to inflammation. Again, I would try for zantac for the "as needed" days.

You are definately not alone. I can not believe that it took so very long to get help for my kids and only because Iain was so very ill did we end up with that help despite Curran being the poster boy for puke for nearly 3 years of his life.

Sometimes they vomit at the sight or smell of food because that triggers the reflux, even before they eat as the stomach acid begins to churn when they signal they are hungry and interested in food. Think about it, when you want something sometimes you may feel your mouth literally water because you are hungry. For these kids that happens and it triggers reflux.

I do worry about weight loss for Curran and so does our ped, but he is a really good weight and height despite being a beanpole. It was his stall on weight for one year that had us all worried. Now he is downright skinny at times but seems to make up for it again. He is not my main worry in the weight department, it is my youngest.

Delissa has not had anything to eat in the last 24 hrs. She cannot even talk about food. I had a hard time giving her the Prevacid yesterday and today. The specialist cannot take us before Wednesday when we have an appointment.

What do I do with her until Wednesday?

What a jouney you and your little ones have had. Everyone has given great advice but I would like to add that feeding therapy at this stage would be critical for you guys. Also it will take about 2 weeks for you to see a great improvement in her GERD symptoms, maybe longer since she is so inflamed. You can try zantac at the same time as the prevacid ask your GI about this, it may help with the in between pain, it has helped us a lot. Good luck and please let us know how you are getting on.

We had an appointment today at the feeding clinic in Plano (Dallas area) and they didn’t think they can help Delissa. So now they are working on referring us to a psychologist. Anyone has heard about this before?

Angela, I think but am not certain that that would mean that she is capable of eating and that all her movements are correct- maybe thats why they can't help cause she knows how to eat. With the psychologist I have heard of it- they are saying she knows how to eat but won't- so why, the psychologist may be able to figure it out.

I wold say that she gets so much pain from eating that she has taught herself to stop eating. I am not positve but it sounds like it. If you get rid of the pain, with the meds, she should start eating again.

How is she doing now? Any better.

Have you tries zantac as well as the prevacid.

You are correct, Scarlet. She knows how to eat but she won't. She is refusing and crying each time we open the meal subject. We are having miserable days. And this is on Prevacid 30. Everything is falling apart around us. I am so desperately trying to hide my tears from her. Tomorrow we are going to the specialist. I will ask him about Zantac.

(((HUGS))) Angela and welcome! I have a 4 yo. GERDling who has gone through much of what you've described. He's still afraid to eat sometimes, but no longer pukes when I walk towards him with a plate or a bowl; however one gag will still end the meal for him.

Updates:

We saw the GI specialist and he thinks she should take Prevacid 2 more months… he said it took 41/2 years for her to get here so it will not bet better in weeks. No Zantac for now. He is not concerned with her weight loss and considers she can still lose 2 lbs before we start panicking.
On Monday we have an interview at Baylor center – with a team of 4 specialists who will also assess her while eating, and we’ll go from there. Anyone has experience with that type of interview, how should I get prepared for it?
She started eating little bits for 2 days now, but before she sits down at the table she does not forget to express her concern: “I hope I can eat and will not vomit”…. And she does not, however only wants a few bites and she’s done.

Angela maybe the prevacid increase has started working? Hopefully over time she will realise eating doesn't hurt so much... The appts seem good though.

Delissa is back to not eating anything. This is after 2 weeks on Prevacid 30, and Prevacid 15 since January 25. I don't see any difference Prevacid is making. She says she is not hungry.
Anyone who has experience with this, please tell me how long have you had your kids without food. The GI said she can go without eating for as long as 4 days. Has anyone tried that?

I am afraid I don't know how to deal with this, Iam getting concerned and she sees me upset and cries ... and even though I tell her I am not upset she is still worried that she upsets me by not eating. However she still can't do anything to fix this.
What should I do different, how are you people dealing with situations like this?

It's certainly a struggle, isn't it?! Evan has gone days without food when he's really sick. At that point, all I can do it try to keep him hydrated. In your dd's case, it sounds like she is legitimately not hungry. That happens with lots of non-GERDling kids too, but generally just for a meal or two at a time. Has your dd been checked for DGE? If her stomach isn't emptying quickly enough, she WILL feel full most of the time.

Angela, we have had very long periods of no eating and I would not reccommend it. Have you tried something like zantac as well? Also if the prevacid isn't working you could try prilosec this combo works well for us.

I would kee going back to the Dr until this is sorted for you guys- you have a right to be worried.