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-   -   Getting worse... (https://www.justmommies.com/forums/f298-ger-reflux/2474747-getting-worse.html)

i3ai3ydanny January 12th, 2012 07:48 PM

Getting worse...
So Danny is maxed out on two medications for reflux and he is still getting worse. There is no pain and hopefully that means no erosion as well (though I really have no idea), but he says several times per day that when he swallows it just comes back up in his mouth. :( We went to the GI and that among other things has them very confused. They have no more options. He has worn their options out. The head GI in the group worked him in on the 25th into a triple booked schedule so that we could do a full food journal between now and then. They referred Danny to Endocrinology as well and will likely do genetics next if he doesn't get any answers from Endo...

Ugh...For the first time in a very long time I found myself praying for a miracle...a split second change where my child would be 100% healed from everything that is wrong with him.... :'(

plc4x1 January 17th, 2012 03:27 PM

Re: Getting worse...
You may want to consider going gluten free or taking a look at the book breaking the vicious cycle. Dietary changes made a tremendous difference for my daughter. It seemed like she was reacting to everything, but once we eliminated gluten and most grains, things improved considerably.

i3ai3ydanny January 18th, 2012 06:57 AM

Re: Getting worse...
We have tested for gluten intolerance many different ways and he has not shown any liklihood of having a positive reaction. We have gone gluten free before with no improvement. In addition to that he has 15 food allergies. If we cut out all gluten he would literally have nothing to eat. He is allergic to just about all of the gluten-free replacements as well...

MauMama January 21st, 2012 07:42 PM

Re: Getting worse...
Hugs Mama. I know how hard it is having a bigger kid with reflux. How is his bowel function? A lot of time if they're backed up they reflux bigger, wetter burps. I don't know why but it's what I've found with Soph.

Have you looked into abdominal massage? We do it with Soph and to be honest, I do'nt know if it helps, but we do it anyways. You go clockwise on the stomach with oil in hopes of pushing the bowels to work. It also goes over the stomach which is said to help it process faster, hoping that the stuff will move into the bowel faster.

Have you had anyone look into eosinophillia? Or delayed gastric emptying?

I have an autoinflammatory disease which causes my reflux and nothing short of my omeprazole, reduced salt and sugar and slippery elm will help.

You can get the slippery elm powder in capsules and you just sprinkle it over yoghurt (soy or normal). My MIL puts it in her OJ in the morning and drinks it. It tastes like sawdust but it works really well at absorbing that acid.

Soph has tested neg for gluten and lactose intolerance and still has quite a bad run with reflux and constipation. See if you can get him to tell you when he's having the wetter burps or 'throw ups' as Soph calls them. See if there is a pattern or a trigger like stress or upsets.

Gah. I don't really have any good advice. Just hugs.

i3ai3ydanny January 21st, 2012 09:27 PM

Re: Getting worse...
His regular poop schedule is no less than 3 times per day and he has not wavered for that unless it is more often (usually when he is sick and/or on an antibiotic). He has had 8 or 9 endoscopies and 2 colonoscopies. They have found ulcers, lymphonodular hyperplasia (enlarged lymph nodes throughout his large intestine) gastritis, esophogities, reflux, and bile reflux. All biopsies were normal except for these things as well. No EoE or any other Eosinophilic issues... :/ The GI's are completely stumped at this point. He sees the head GI at the group we are with Wednesday so hopefully we will find something then... He is allergic to eggs, milk, soy, tomato, carrot, red 40, cinnamon, tree nuts, strawberry, rice, coconut, lamb, apple, chicken, and beef and the last two were just cut out as a result of testing and possibly causing the stomach pain but it hasn't eradicated it completely... :( They also checked for "signs of delayed gastric emptying" whatever that would be during the endoscopies (at least the last 2) but didn't see anything suggesting it. He has been taking pills for over a year due to the amount of medication he has to take daily for all his issues... He has several specialists working to try to figure things out but we will hopefully get at least an idea of where to go from here on Wednesday...

MauMama January 23rd, 2012 09:43 PM

Re: Getting worse...
Oh Mama. My heart goes out to Danny and your family. I just want to scoop him up and give him a cuddle. What a warrior boy to keep going! I so hope the Paeds can figure it out. It's so unfair for him to struggle.

We did the Delayed Gastric Emptying testing with the barium swallow and they removed scar tissue during her gastroscopy.

I'm just thinking aloud, but have you guys had any autoimmune testing done for things like Crohn's or Lupus? I know they use sed rates and other inflammatory markers. I'm sure they would have seen inflamed tissue during the colonoscopy but if he hasn't developed it yet, he could have the raised ANA or something other as a flag.

There has to be a cause to his suffering. I wonder if an internalist would take him being so young?

There is a good pdf called Introduction to Disorders that Mimic Reflux: Gastrointestinal “Zebras” @ www.articles.complexchild.com/00031.pdf

Sophie had a sort of diagnosis for abdominal migraine which no one explored further once she was diagnosed as having Autism. They sort of said: Oh, she has Autism, therefore all her sore joints and tummy troubles are from it.

I just sort of went: *headbang against wall* and until we can find someone else to take her, we're sort of short of options.

Big, big hugs to you. If you'd like to email back and forth, we can. I know it meant a lot to have someone to vent to at times.

i3ai3ydanny January 24th, 2012 07:33 PM

Re: Getting worse...
The GI hasn't...the hematologist in Cincinnati has run every blood test that could possibly be done and they have taken biopsies from his colon and the upper GI to test as well. All negative for signs of Chron's. The stool test for inflammation markers came up negative even with the lymphonodular hyperplasia (aka inflammation). I would LOVE to email... PM me your addy. :)

MauMama January 29th, 2012 11:15 PM

Re: Getting worse...
Sorry. Life got busy. Pm'ing now!

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