Children, GERD, eating and sleeping?

Hi! My daughter has GERD. She has had very severe reflux since she was a newborn, and it never really got any better (despite what doctors said should happen). I have been trying my best for her, but she does not live with me, and I do not have as much of a say in how she is taken care of. In the mean time, I have times that she is with me and I need to care for her. I have asked what she wants (she is not quite 13), and I get a lot of the typical "I do not know"s that are typical for her age. When she was an infant, she has really bad allegries (all types) and the gastro allergies ended her up in the hospital at times.

Now, she has problems, but I am told by her that she has been told that nothing really can be done. I will be honest. I do not know the extent of what is really going on with her. I do not want to get into specifics, but all I can say are from observation and what she tells me. This is what I know. She has been diagnosed with GERD. She also has a slow to empty stomach. I could have told them that. She is still regerging things from the day before. She is on Prilosec or something similar, and she has to sleep with her bed elevated. This makes things better (at least nights), but she still has things going on. I remember always having a bucket by her bed so that she would not "throw up" (her words, not mine) on herself during her sleep. The reflux is always silent - not really throwing up. Her throat is typically scratchy and (what gets to me) is that she determines what she will eat by what will taste good coming up.

I am really trying to do what I can for her. Her sleeping is something okay, but there are times that the reflux overrides the elevation. I don't know what to do or what to give her when this happens. This (helplessness) has its basis in foods that she eats and what she can and can't eat. When she eats, there seems to be only 10 foods that she is willing to touch. They are odd (to me). If I was having reflux (and I have in the past), I would not touch these foods. Her favorites are pepperoni, pizza and spaghetti. Of all the foods she eats, these are the types she wants to taste coming back up. She has told me that she loves apples, but she will rarely eat them because they make the symptoms worse. Oh, she will eat one particular type of chocolate pudding. It is some chocolate jello brand pudding. When she was taking Prilosec capsules, I would break it open and mix the contents in the pudding (the casing on the pill would make her gag and she would not take them otherwise). She does not eat hotdogs or hamburgers (texture as well as taste) and almost all other types of meat are out. In fact, the only meat that I can recall that she will eat is pepperoni? She will not touch anything from the sea (fish or plants), but I do not know if that is because of the stomach or her own feelings about sea life.

What I want to know is if there is anything I can do for her to help her eat other types of foods. Right now, I am always making two lunches and dinners (I have another kid who refuses to eat anything her sister likes (Texture/taste sensitivities) and sometimes it is just easier to pick your battles). Tomorrow, I am making turkey. I already know that she will not touch it. She may (if she is in the mood) eat the dressing, but I seriously doubt that she will eat the meat. I already have a stand by if she can't (not just won't) eat it. I don't want her to have to live like this. I had to have gastric bypass several years ago, and I have a lot of limitations on what I can and can't eat. She is just a kid. I just wish that she could have a small smoothie without regretting it for the rest of the weekend (like this past weekend when she neglected to remind me until after I bought it for her). I don't know what to do. I already let her choose her foods, make her (which is like pulling teeth) take her medications and give her an elevated bed and a lot of pillows when she sleeps. I just wish she could have a normal life (I do not use that wording to her). She has told me that she would rather have surgery than keep on like this. She is just a kid. I want her to be happy. :/ I want her to be well.

Hi again Joy. :)

I can't talk to her doctor. It is a long and complicated situation, and I have tried to talk to them, but they are being hard nosed. As far as I understand, they said that they do not do surgery on kids her age, and he medications they could give her have a huge risk of side effects (I think it was the possibility of developing a tick that would not stop even if the meds were?)

I am trying to get in contact with the doctors, but it has proved difficult. In the mean time, I am just trying to figure out what I can do for her when she is with me.

The guy is an idiot. Take her to a new doctor. If she keeps up like this there will eventually be MAJOR damage. I'm not gonna sugar coat it. She needs surgery. Find someone who will do it. NOW.

Ok, let's slow down a bit. Though surgery is something that may have to be done, you need to try fixing diet first.

First, get her to a good childrens hospital that specialize in childrens GI, her ped is out of his league on this.

Digestive enzemyes before each meal will help break down and help process the food. All that "red sauce" food needs to go! She needs lean meat (chicken/turkey, no pepperoni, pizza etc.) along with veggies (raw is best), non-acidic fruit, whole grains. Chocolate is a huge no-no also!

A teaspoon of manuka honey in warm water will sooth her throat.

@sost9
I don't know how to PM on here and I don't like to give out personal info. You can send the message by StKitt or Ophwel (the other two monitors here) and ask them to relay it to me, if you like.

It sounds like you're doing everything you can for her at home. If she has motility problems see if you can find some foods that are easy to digest for motility problems.
Try your best to convince her other caregivers to take her to a different doctor for second opinion.
I wish you well.

Oh and as far as gluten free, I am seriously making the entire family eat a gluten and milk free diet. I think we can all benefit from it.

Do you think you could report your ex for not taking her to the doctor for a serious condition?
You'll need a doctor to back you up. Discuss this with DFAC.

Department of Family and Children Services

erica, great minds think a like. :)

sost9,

Mankua honey is a healing honey, there is no equal. It may not cure gerd, however I believe it will help heal damage caused by gerd.

If I were you, I would seek legal advice from an attorney, that way you have something to stand on. I don't know the details, but I would think as her mother you should have some legal rights in the say of medical issues.