Scared, frustrated, sad for my daughter - Mothering Forums

Forum Jump: 
 
Thread Tools
#1 of 19 Old 08-11-2013, 09:31 PM - Thread Starter
 
jmarroq's Avatar
 
Join Date: Jul 2008
Posts: 303
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 7 Post(s)

My girl has had upper GI problems since she was an infant. They have morphed from one thing to the other over the years (pain only, pain with burping, pain with drinking, pain with eating, spitting up with pain, and now spitting up with no pain). Sometimes the meds work a little, sometimes not at all. My little healthy eater doesn't want to eat any more. She knows it will all just come back up. She spits up...small amounts of stomach contents, little by little after each meal. She is on so many meds to control it, and on a GERD diet and it is not helping. She is normally such a happy little girl, but she is sad lately. She broke down and cried uncontrollably in the grocery store because she was so hungry but didn't want to eat. There we were, the two of us, just hugging and crying together. I keep promising her I am going to get her help, and I still don't have an answer. She has lost her beautiful white smile. The enamel on her teeth is gone. I took her for her 4th GI test a few days ago (she had a barium swallow shortly after birth because she was premature, she had an endoscopy at 3 for stomach pain and spitting up, she had a gastric emptying scan at 6 for the same thing, and here we are 6 months later doing another nuclear test for her gallbladder). All tests come back normal..not sure about gallbladder yet, but I suspect the same. They had to start an IV for this test. She fought it really bad, so it was painful for her. She was so hysterical and she got mad at me and screamed "why did you make me do this!!". It breaks my heart. I just need some words of encouragement. Normally I can hold it together, but I have been crying lately after she goes to sleep. I broke down and let her have a fudgesicle for dessert tonight. I figure she still spits up a dozen times after dinner even when I restrict her diet, so why not?? She spit up as usual for about a half hour. Then we went to a movie. I brought her Reglan with us, gave it to her at 10:15 and by 10:30 she started spitting up again (mostly liquid with little pieces of kale and carrots in it).  I really don't want to send her to school with meds. Reglan can cause permanent disabilities if not dosed properly. But she is so scared to go out in public...sometimes the spit up comes out before she knows it's happening. We are going to our third pediatric GI this week. It is 3 hours away. Hopefully they will have some answers. I hate giving her the meds. Side effects are bone loss, heart problems and c-diff to name a few. I tried natural remedies first this time when it started getting bad, and she got much worse...we have some good days on meds, but most are bad. If the acid continues to wreak havoc on her little body she will be at risk for esophageal cancer, so I am willing to try anything...even drugs with side effects. You know it's bad when I am thinking about praying. I haven't prayed since I was hospitalized with complications at 31 weeks and I knew she was going to be born prematurely. That was almost 7 years ago!

jmarroq is offline  
#2 of 19 Old 08-11-2013, 09:53 PM
 
Mama505's Avatar
 
Join Date: Jan 2012
Location: New Mexico
Posts: 819
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

hug2.gif I wish there were something I could share to help you in this.  You are very strong, and so is your daughter.  I hope the new GI can find some answers for you. 

Mama505 is offline  
#3 of 19 Old 08-11-2013, 09:58 PM
 
Alenushka's Avatar
 
Join Date: Jul 2002
Location: CA
Posts: 1,893
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)

Ask GI about lower esophageal sphincter issues.

 

Another rare disorder that is worth mentioning is Achalasia, It is often misdiagnosed.

Alenushka is offline  
#4 of 19 Old 08-12-2013, 06:59 AM
 
Mirzam's Avatar
 
Join Date: Sep 2002
Location: Outside the hive mind
Posts: 7,504
Mentioned: 1 Post(s)
Tagged: 0 Thread(s)
Quoted: 83 Post(s)

Have you explored alternative methods of assisting her body to heal besides conventional medical practitioners as they obviously do not have the tools to help at this point. Prescribing more and different drugs will not allow her to heal, it just poisons her body further, it is a slippery slope to greater ill health. You need to address the cause of the imbalance and not just try and ameliorate the symptoms with pharmaceutical medications. Your poor DD has been through so much, and if she were mine, I would look for help elsewhere. 

 

A good start might be doing a search here for the "Healing the Gut Tribe" threads.  Personally, I would look into enzyme therapy, healing gut microbiota, nutritional therapy and homeopathy (especially bowel nosodes).


Rainbow.giftstillheart.gifsmile.gif

 

"If you find from your own experience that something is a fact and it contradicts what some authority has written down, then you must abandon the authority and base your reasoning on your own findings"~ Leonardo da Vinci

Mirzam is online now  
#5 of 19 Old 08-12-2013, 11:46 AM
 
kathymuggle's Avatar
 
Join Date: Jul 2012
Posts: 4,136
Mentioned: 1 Post(s)
Tagged: 0 Thread(s)
Quoted: 182 Post(s)

hug2.gif for both of you.


There is a battle of two wolves inside us.  One is good and the other is evil.  The wolf that wins is the one you feed.

 

Book and herb loving mama to 1 preteen and 2 teens (when did that happen?).  We travel, go to school, homeschool, live rurally, eat our veggies, spend too much time...

kathymuggle is online now  
#6 of 19 Old 08-12-2013, 08:55 PM - Thread Starter
 
jmarroq's Avatar
 
Join Date: Jul 2008
Posts: 303
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 7 Post(s)

Thank you for all your help.

 

I did try the natural route a bit, but I found so much conflicting info on line. For example, some say probiotics can be bad during GERD flare-ups...others say the opposite.

 

I tried the Tummy Bears enzymes for kids and chewing gum after meals to stimulate digestion and it was scary how bad she got.

 

I may go pick up some licorice and try that. I also hear wonderful things about aloe juice but you have to be careful to get the kind that has something removed so it doesn't give you the runs. Also, I'm not sure how safe aloe is for kids.

 

I just wish I could get it under control first before I go natural again, but I may not have a choice. 

jmarroq is offline  
#7 of 19 Old 08-13-2013, 06:53 AM
 
Mirzam's Avatar
 
Join Date: Sep 2002
Location: Outside the hive mind
Posts: 7,504
Mentioned: 1 Post(s)
Tagged: 0 Thread(s)
Quoted: 83 Post(s)
Quote:
Originally Posted by jmarroq View Post

Thank you for all your help.

 

I did try the natural route a bit, but I found so much conflicting info on line. For example, some say probiotics can be bad during GERD flare-ups...others say the opposite.

 

I tried the Tummy Bears enzymes for kids and chewing gum after meals to stimulate digestion and it was scary how bad she got.

 

I may go pick up some licorice and try that. I also hear wonderful things about aloe juice but you have to be careful to get the kind that has something removed so it doesn't give you the runs. Also, I'm not sure how safe aloe is for kids.

 

I just wish I could get it under control first before I go natural again, but I may not have a choice. 

With all due respect, this is more serious than trying to handle this by googling info online - there is a great deal of valuable knowledge out there, but every child is different and a treatment protocol must be customized by someone who knows what they are doing, Buying OTC enzymes and probiotics and some licorice will not cut it, especially when you child is already on phramaceutical medications. You need to get to the route cause of this issue - both physical and emotional. You also need to understand, that sometimes symptoms get worse before they get better, all her symptoms is her body attempting to heal, but given the serverity of this, I think you really need to do this with a qualified practictioner. 

 

I am not saying not to research this yourself, you must, you need to be as knowledgable as any practitioner. I have found when you are open to help from the Universe, someone will come to assist.


Rainbow.giftstillheart.gifsmile.gif

 

"If you find from your own experience that something is a fact and it contradicts what some authority has written down, then you must abandon the authority and base your reasoning on your own findings"~ Leonardo da Vinci

Mirzam is online now  
#8 of 19 Old 08-13-2013, 07:10 AM
 
Alenushka's Avatar
 
Join Date: Jul 2002
Location: CA
Posts: 1,893
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)

Sometime GI disorders can take while to diagnose but there are rear treatment there .

 

I would try going to the nearest University Hospital.

 

See an immunologist as well.

Alenushka is offline  
#9 of 19 Old 08-13-2013, 07:44 AM
 
Mirzam's Avatar
 
Join Date: Sep 2002
Location: Outside the hive mind
Posts: 7,504
Mentioned: 1 Post(s)
Tagged: 0 Thread(s)
Quoted: 83 Post(s)
Quote:
Originally Posted by Alenushka View Post

Sometime GI disorders can take while to diagnose but there are rear [sic] treatment there .

 

I would try going to the nearest University Hospital.

 

See an immunologist as well.

 

Treatments are not cures. 


Rainbow.giftstillheart.gifsmile.gif

 

"If you find from your own experience that something is a fact and it contradicts what some authority has written down, then you must abandon the authority and base your reasoning on your own findings"~ Leonardo da Vinci

Mirzam is online now  
#10 of 19 Old 08-13-2013, 08:48 AM
 
Alenushka's Avatar
 
Join Date: Jul 2002
Location: CA
Posts: 1,893
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 1 Post(s)

Many illnesses have no cures. At leas Western medicine does not lie about it.

 

However, if it is a problem with a the sphincter between esophagus and stomach or anahalsia, there is  an effective surgical cure.

 

When I was young I had horrible hear burn, gastritis and ulcer.

 

I reduces stress, I did yoga, I stayed away form many foods and tried many herbal remedies an probootics.  I spent tons of money on it.  People were telling me "karma", "inbalance inside yourself:", "Meditate more", "eat more fermented foods". Nothing worked. I was wasting money and personal energy. Pretty much every holistic practitioner mad me feel like it was all my fault in one way or another. If only I was more positive, if only I meditated harder, if only I used better more expensive enzymes.

 

I was loosing weight and becoming depressed.

 

I  finally weight to a GI doctor at the local university.

 

I was tested for H , Pylori infection.   In many people H. Pylory is present and causes no issues but in small percentage of people it can lead to sever issues.

 

I had a grueling 2 week treatment of antibiotics antacids reducers.

 

It was 12 years ago. I have not ha an issues with my stomach since and eat everything now. I am cured by Western medicine. I cured by science that changes and moves forward not by some ancient superstition.

 

So yes, go get second, third, and fourth opinion if needed!  Do not loose hope.

Alenushka is offline  
#11 of 19 Old 08-14-2013, 05:52 AM - Thread Starter
 
jmarroq's Avatar
 
Join Date: Jul 2008
Posts: 303
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 7 Post(s)
Quote:
Originally Posted by Mirzam View Post

With all due respect, this is more serious than trying to handle this by googling info online - there is a great deal of valuable knowledge out there, but every child is different and a treatment protocol must be customized by someone who knows what they are doing, Buying OTC enzymes and probiotics and some licorice will not cut it, especially when you child is already on phramaceutical medications. You need to get to the route cause of this issue - both physical and emotional. You also need to understand, that sometimes symptoms get worse before they get better, all her symptoms is her body attempting to heal, but given the serverity of this, I think you really need to do this with a qualified practictioner. 

 

I am not saying not to research this yourself, you must, you need to be as knowledgable as any practitioner. I have found when you are open to help from the Universe, someone will come to assist.

I didn't try natural methods while she was on pharmaceutical meds. I try natural BEFORE going to the doctor, and it usually works, especially if it is something like a fever, cold, etc. I find lots of info on Google and then head to the health food store for supplements, homeopathic, etc. I call the pediatrician as well to discuss any supplements I am giving. I tried that this time for her stomach issues, but got really scared when she started spitting up non-stop.

 

We don't have any "natural" doctors around here that I know of...just one massage type place that claims to be natural health clinics. I suppose I could check out their credentials, but I don't even know what "good" credentials are for a natural doctor. Do you?

 

I wish I lived in a big city where word-of-mouth would lead me to a great natural doctor. I know of a DAN doctor for autism-like symptoms about an hour away, but I don't know of any doctors who would specialize in digestive issues and not go the pharm route first. To be honest, I am more open to trying acupuncture at this point, but again...how do you check credentials for this type of thing? 

 

Update: she is still spitting up. 14 times yesterday. Gall bladder function test was normal. Going to university hospital specialist on Friday.

jmarroq is offline  
#12 of 19 Old 08-14-2013, 05:57 AM - Thread Starter
 
jmarroq's Avatar
 
Join Date: Jul 2008
Posts: 303
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 7 Post(s)
Quote:
Originally Posted by Alenushka View Post

Many illnesses have no cures. At leas Western medicine does not lie about it.

 

However, if it is a problem with a the sphincter between esophagus and stomach or anahalsia, there is  an effective surgical cure.

 

When I was young I had horrible hear burn, gastritis and ulcer.

 

I reduces stress, I did yoga, I stayed away form many foods and tried many herbal remedies an probootics.  I spent tons of money on it.  People were telling me "karma", "inbalance inside yourself:", "Meditate more", "eat more fermented foods". Nothing worked. I was wasting money and personal energy. Pretty much every holistic practitioner mad me feel like it was all my fault in one way or another. If only I was more positive, if only I meditated harder, if only I used better more expensive enzymes.

 

I was loosing weight and becoming depressed.

 

I  finally weight to a GI doctor at the local university.

 

I was tested for H , Pylori infection.   In many people H. Pylory is present and causes no issues but in small percentage of people it can lead to sever issues.

 

I had a grueling 2 week treatment of antibiotics antacids reducers.

 

It was 12 years ago. I have not ha an issues with my stomach since and eat everything now. I am cured by Western medicine. I cured by science that changes and moves forward not by some ancient superstition.

 

So yes, go get second, third, and fourth opinion if needed!  Do not loose hope.

Thank you! She was tested for H Pylori years ago, during an endoscopy and it was negative. I guess since she has always had issues, they don't suspect it any more. I am going to ask the new doctor about it when we go on Friday. 

jmarroq is offline  
#13 of 19 Old 08-17-2013, 06:41 PM - Thread Starter
 
jmarroq's Avatar
 
Join Date: Jul 2008
Posts: 303
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 7 Post(s)

Update. New doctor wants to do a few more tests, and if they all come back negative he wants to go the psych route. Apparently, there is a disorder called rumination syndrome. She does fit some of the criteria for it, but not all. If anything, I suspect she may have a touch of it, but it is being brought on by an actual medical problem which no one is able to pinpoint. 

 

New doctor did a barium swallow, right then and there. It was also negative. Problem is, when she is fasting (which is required for these tests) she doesn't have symptoms. She has symptoms after eating a solid meal...about an hour to 2 hours later...and it lasts for about an hour to 2 hours. On the way home from the doctor, after the negative barium swallow, she spit up 34 times...filled a zip lock half way with stomach contents from lunch (we ate after the test). It was stinky like real vomit, which is unusual for rumination. Normally with rumination, the spitting begins shortly after eating and stops once the food tastes acidic.

 

Good news is, he took her off one of her meds and she had a better day today.  She spit twice after breakfast and once after lunch and twice after dinner. We went to the health food store and got some supplements for stomach problems. Keeping fingers crossed...school starts in two days! I already made her teacher aware that she has a condition and may be in the bathroom a lot.

jmarroq is offline  
#14 of 19 Old 08-17-2013, 07:16 PM
 
Asiago's Avatar
 
Join Date: Jul 2009
Posts: 1,776
Mentioned: 1 Post(s)
Tagged: 0 Thread(s)
Quoted: 6 Post(s)
Quick thought, has the vomit ever been examined or analyzed? I would think that would be informative, especially volume, like half a ziplock collected within a short time frame. Jut examining the consistency, analyzing the make up of it, then pathogens, apart from h.pylori, whatever else could possibly be tested I suppose.
My thoughts and prayers are with you, I hope someone will diagnose her correctly soon so that life can improve. She is so fortunate to have a mom who cares so much. Good luck.
Asiago is offline  
#15 of 19 Old 08-19-2013, 03:53 PM - Thread Starter
 
jmarroq's Avatar
 
Join Date: Jul 2008
Posts: 303
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 7 Post(s)

Good point. I wonder if they could examine her vomit. I know they do fecal smears, so why not? I showed the doc a pic I had of a baggie of vomit...and a video of her spitting non-stop after eating.

 

First day of school today and she said she had to go to the restroom twice to spit after lunch. No spitting after breakfast, which I am surprised, because the people we carpool with took the kids for donuts!!

 

Chocolate is a big no-no for GERD sufferers, so she hasn't had any in a few months...but today she came home crying from her friend's house and said she "accidentally" ate some chocolate. Poor thing. 

 

I am going to touch base with her playmate/carpool family friends to let them know she is on a restricted diet these days.

 

I may put off the second endoscopy if she keeps this up (less and less spit each day). Keeping fingers crossed.

 

Thanks for all the well wishes! Knew I could count on Mothering!

jmarroq is offline  
#16 of 19 Old 08-19-2013, 07:32 PM
 
kathymuggle's Avatar
 
Join Date: Jul 2012
Posts: 4,136
Mentioned: 1 Post(s)
Tagged: 0 Thread(s)
Quoted: 182 Post(s)
Quote:
Originally Posted by jmarroq View Post

Update. New doctor wants to do a few more tests, and if they all come back negative he wants to go the psych route. Apparently, there is a disorder called rumination syndrome. She does fit some of the criteria for it, but not all. If anything, I suspect she may have a touch of it, but it is being brought on by an actual medical problem which no one is able to pinpoint. 

 

Ugh.  When my son first presented with digestion issues, they decided it was mostly anxiety related.  While I think that can be a part of it (it can be a vicious circle) that was not the cause.  I was actually quite annoyed they went to anxiety without trying to figure out the medical issues.  


There is a battle of two wolves inside us.  One is good and the other is evil.  The wolf that wins is the one you feed.

 

Book and herb loving mama to 1 preteen and 2 teens (when did that happen?).  We travel, go to school, homeschool, live rurally, eat our veggies, spend too much time...

kathymuggle is online now  
#17 of 19 Old 08-20-2013, 11:25 AM
 
Asiago's Avatar
 
Join Date: Jul 2009
Posts: 1,776
Mentioned: 1 Post(s)
Tagged: 0 Thread(s)
Quoted: 6 Post(s)
Back to the vomit for a second, my own veterinarian recommends bringing it in, I would think a physician would do various lab tests on it too. Apparently there is all sorts of information to be gathered from it. Also the way in which it occurs is of significance, the sound apparently varies considerably for various types of vomiting. Was the doctor able to asses the sound from the video?
Apart from GI tract origin, also Intracranial pressure on the meninges can also result in vomiting. Vestibular issues can also result in vomiting....any issues with motion? In other words the source or origin may be far from where the symptoms are.
Asiago is offline  
#18 of 19 Old 08-20-2013, 05:29 PM - Thread Starter
 
jmarroq's Avatar
 
Join Date: Jul 2008
Posts: 303
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 7 Post(s)

The doctor did ask about the sounds. He asked if she retched. I said no, not usually. It's more like a little burp. He said the video looked like rumination syndrome to him since she seems to have control over it. Most of the time she does, but it occasionally sneaks up on her and comes flying out. 

 

I thought there might be a neurological connection as well...funny you brought that up. It does seem worse in the car. She's never been one to get motion sickness though. She has been complaining of headaches too, which is new, but I read that can be a side effect of all the meds she is on, so I brushed it off. The new doc did ask about headaches and I told him she did have them. She does bang her head repeatedly on her pillow, when she's sleeping, falling asleep or waking up. It started when she became mobile, at about 1 yr old. I never thought anything of it, since my son used to do the same thing. He stopped by the time he was her age though. My son had developmental delays and a lot of sensory issues as well. He also has tics that wax and wane and an MRI showed some spots on the brain. Docs aren't that concerned, as long as they don't change. Some people just have them...I think they call them vascular spaces. I didn't think to bring this all up to the gastro doc, but I will when I call to ask if we can hold off on the endoscopy for a while. Maybe he was going in that direction when he asked about headaches...some sort of neurological connection. A short circuit or tic of some sort. 

jmarroq is offline  
#19 of 19 Old 08-20-2013, 05:57 PM
 
Asiago's Avatar
 
Join Date: Jul 2009
Posts: 1,776
Mentioned: 1 Post(s)
Tagged: 0 Thread(s)
Quoted: 6 Post(s)
Intracranial pressure from swelling, inflammation, of the lining of the brain causing pain, that was more or less what I was speaking of. It can be caused by infection or trauma.
And the vestibular factor would be the vestibular apparatus the itty bitty, interconnected bones or canals within the ear that control our equilibrium. When something is off with them the whole body seems to be off balance and could definitely make a person nauseous.
Does the GI specialist know your son's history? Perhaps it would be helpful, it may or may not be significant though, but may be worth mentioning.
I would also talk about the head banging, both daughter and son.
My thoughts are with you, I hope the medical providers can get to the bottom of this soon.
Asiago is offline  
Reply

Tags
Health Healing

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off