Children, GERD, eating and sleeping?

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SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 9/17/2012 9:56 PM (GMT -6)   
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.
UCTD (suspected Lupus) and probably Fibromyalgia.... still going through the tests and all that. Hypermobility is also a factor. Also have migraines, anxiety, depression, eye issues,...etc

Frequent lurker... Part time poster.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/17/2012 10:56 PM (GMT -6)   
Have you had a chance to discuss the surgery with her doctor?
If she has a slow stomach she might need some regulating medication.
I know one type is reglan but I don't know if they give it to children.

Can you take her to the doctor?
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 9/17/2012 11:10 PM (GMT -6)   
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.
UCTD (suspected Lupus) and probably Fibromyalgia.... still going through the tests and all that. Hypermobility is also a factor. Also have migraines, anxiety, depression, eye issues,...etc

Frequent lurker... Part time poster.

SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 9/17/2012 11:12 PM (GMT -6)   
Oh Joy, is there a way to PM on these forums? I needed to tell you something, but I don't want to say it in the open forums.
UCTD (suspected Lupus) and probably Fibromyalgia.... still going through the tests and all that. Hypermobility is also a factor. Also have migraines, anxiety, depression, eye issues,...etc

Frequent lurker... Part time poster.

Stormienite
Regular Member


Date Joined Dec 2009
Total Posts : 186
   Posted 9/18/2012 6:31 AM (GMT -6)   
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.

ericapeace2000
Forum Moderator


Date Joined Mar 2012
Total Posts : 1110
   Posted 9/18/2012 7:47 AM (GMT -6)   
I think a new Gastro doctor is a good idea. Do some research for the best doctors in your area. She should not be eating pizza, or spaghetti sauce or chocolate etc. She may benefit on a low fat, low acid, low carb and possibly gluten free. Diet is one of the most important things with reflux. She could also benefit from papaya enzymes to help break down food since she has a slow stomach emptying process. There are a host of other natural remedies that are trial and error. I know you have limited control as she does not live with you, but I wonder if you and her other caretaker could be in communication about this and both reinforce it. In addition, because of the prilosec, she should also take a b12 and calcium suppliment. I know this is a lot for a 13 year old, but it is her health.
GERD Moderator; Diagnosed GERD, no other medical conditions (this one is enough)

DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 9/18/2012 8:01 AM (GMT -6)   
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.

ericapeace2000
Forum Moderator


Date Joined Mar 2012
Total Posts : 1110
   Posted 9/18/2012 11:00 AM (GMT -6)   
Doggbones, I see we are on the same page yet again!
GERD Moderator; Diagnosed GERD, no other medical conditions (this one is enough)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/18/2012 11:55 AM (GMT -6)   
@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.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 9/18/2012 1:50 PM (GMT -6)   
Thanks everyone. :)

I do know the diet is not good. That is part of the reason I am asking. She is very stubborn and just will not eat (as in no food at all - she would rather go hungry than have some of her food regurgitate) if it is some particular types of foods. I realize that what she does eat is not the healthiest for her (I do try to supplement her when she is here). The problem is that those foods taste the best to her. She is almost vegetarian at this point (except the pepperoni), and she is also resenting taking any medications at all (I have to argue with her older sister about medications too, so I know that is an age thing).

I really want her father to get off his butt and help her with this, but he denies any problems (another log story) and I have been trying for over two years to get something done (legally). I do not want her to have this damage. I know what this can do to her. The problem with him is that his attitude is that you do not go to the doctor unless you are on your death bed.

@Joy - Of course I don't want you to give personal information. I am the same way. I will figure out a way to let you know what I want to. :) It is not imperative that you know, but it would make some of what I post (and some of what I do not) easier to understand.

Back to my daughter: Manuka honey. I have not heard of this. I typically buy raw local honey. Is this something similar to that, or is it special? As I mentioned, I do supplement her. Not so much with the B12 (I know the importance of that one - I receive a shot monthly for it), but I make sure that she gets calcium and Vit D.

My biggest problem with this situation is that I do not have any say in her medical care. I can only sit back and watch (and help when she is over here). I want her to eat right, but she is very stubborn. How can I get a kid who would rather starve herself than eat certain foods to eat?? As I mentioned earlier... she eats the foods that are not good for her because they taste the best when they do come up. Healthy foods (she does like raw - not cooked - veggies) taste and feel nasty to her, so she just refuses to eat them. I don't know what to do. My gut says that I need to take her to a ped gastro (and there is a wonderful teaching hospital here), but I can't. Although, I am about ready to anyway. I can only get one appointment in though before her dad realizes that I have. It has to be a good appointment that will show that I am not making any of this up (in court). *sigh* Maybe I will make an appt for her anyway.
UCTD (suspected Lupus) and probably Fibromyalgia.... still going through the tests and all that. Hypermobility is also a factor. Also have migraines, anxiety, depression, eye issues,...etc

Frequent lurker... Part time poster.

SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 9/18/2012 1:52 PM (GMT -6)   
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.
UCTD (suspected Lupus) and probably Fibromyalgia.... still going through the tests and all that. Hypermobility is also a factor. Also have migraines, anxiety, depression, eye issues,...etc

Frequent lurker... Part time poster.

JellyBeanZ
Regular Member


Date Joined Sep 2012
Total Posts : 26
   Posted 9/18/2012 1:57 PM (GMT -6)   
I can understand your frustrations. And this would certainly concern me as well.
I have some suggestions, I don't fully understand your situation but these are just ideas.
Have you tried taking her to a doctor that could give you an opinion outside of what you have already learned? And did you know that they have medications for slow-emptying stomachs?
Maybe a through check up from highly recommended Pediatric GI doctor will give you some more insight on whats going on with her.

I certainly hope you can figure this out for your own comfort as well as your daughter!!
Good Luck!
Frustrated and hungry! (Wrapped 8-28-2012)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/18/2012 4:09 PM (GMT -6)   
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.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

SoSt9
Regular Member


Date Joined May 2012
Total Posts : 277
   Posted 9/18/2012 5:05 PM (GMT -6)   
Joy, that is a possibility. The problem is getting someone to actually be able to back me up medically. The entire situation is SNAFU. What is DFAC? Is it like JFS?
UCTD (suspected Lupus) and probably Fibromyalgia.... still going through the tests and all that. Hypermobility is also a factor. Also have migraines, anxiety, depression, eye issues,...etc

Frequent lurker... Part time poster.

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/18/2012 8:48 PM (GMT -6)   
Department of Family and Children Services
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

robspect
Regular Member


Date Joined Sep 2012
Total Posts : 28
   Posted 9/19/2012 1:33 AM (GMT -6)   
Joy,
My heart goes out to you as a parent. I have three girls and want nothing but the best for them too. I've recently been doing some research into sleep positioning for GERD and been getting some help from forum members. The summary is this: when you're lying flat on you bed, sleeping on your left side is better for reflux. However, for people with a slow emptying stomach sleeping on your right side helps the stomach to drain faster because that is the side where the exit valve is. I know it's not ideal to sleep on your side on an incline on a wedge (at least it's not for me cause I have a bad shoulder) but you could maybe try having her sleep elevated on her right side. Maybe the combo could help.

My girls (4,3, and 5 months) talk my ear off now. I'm not looking forward to those teenage years when they start to close up about personal stuff. Good luck.

DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 707
   Posted 9/19/2012 12:21 PM (GMT -6)   
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.
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