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12-20-2013, 11:07 PM   #31
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Also I would clear any of that with your doctor if you were to try it.
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12-21-2013, 04:39 AM   #32
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Have any of you tried homeopathy or herbs?
Yes. I wouldn't go down the alternative route ever again. Cost me a lot emotionally and financially, and did me no good at all.
12-21-2013, 07:39 PM   #33
kimmidwife
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Thanks Nims22. I am doing some research into homeopathy currently and will let you all know what we find.
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Crohn's Dx'ed Sept 08
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12-22-2013, 05:38 AM   #34
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Thanks Nims22. I am doing some research into homeopathy currently and will let you all know what we find.
There is no scientific evidence that homeopathy works. I tried it, and it did no good at all. I know how it feels when you're sick (or someone you love is sick) and you feel like you want to try anything, and, especially when conventional medicine isn't able to help, you start wanting to try other things, but I would really discourage you from trying homeopathy.
12-23-2013, 10:26 AM   #35
kimmidwife
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UnXmas,
We have had some really good experiences with homeopathy and herbs for other things. I have used it personally in my profession as well. I am consulting with a top expert in homeopathy. We of course will be careful but it is something I am very familiar and comfortable with. At this time for every treatment they have offered us the risks vs benefits are so mixed that I am willing to give this a try. I will keep everyone posted on our journey.
12-24-2013, 11:05 AM   #36
kimmidwife
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Just got the official radiology report with Caitlyn's motility study results. It is really bad. Very decreased. It is funny that she was actually feeling a little better the past few days after she did the clean out for the colonoscopy. Today is the first day she is feeling really yucky again.
12-24-2013, 12:55 PM   #37
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Sorry to hear that I always feel good the next few days after that clean out too! Hopefully you figure something out to help. It is an awful feeling. I used to feel like I had a rock in my stomach all day until I threw everything up the next day. I also had a very hard time gaining weight as you can imagine.
12-30-2013, 06:27 PM   #38
my little penguin
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What about Botox injections ?
I know they have used this with some success at cchmc .
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12-30-2013, 06:30 PM   #39
my little penguin
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Results Total no of patients 21, Male 06, Female 15 (M:F 2:5). Age range 2376 years. Mean age 47.8 years. Median and mean follow-up 2 years.81% (17) of them were diabetic, others were idiopathic cases. All of them had vomiting, 60% of them had bloating and early satiety as their presenting symptoms. All had antiemetics and prokinetics, 65% had erythromycin and 20% had amitriptyline. All of them had intrapyloric Botox (200 units) using 23G, 8 mm needle. Treatment repeated when symptoms recur. 61.8% showed good response to botox, 19% showed no response. Mean duration of response was 4.2 months.72% of diabetic gastroparesis showed good response. Significant improvement in GCIS (Gastroparesis Cardinal Symptom Index) noted in diabetic group (p < 0.05).62% of diabetic gained weight and 50% insulin requirements increased post-treatment.
Conclusion This is probably the first published study with longer follow-up period from UK (mean 2 years, maximum 3.8 years). More beneficial in diabetic gastroparesis. Less effective in idiopathic group. Failures may respond to gastric pacing.

From:

http://m.gut.bmj.com/content/60/Suppl_1/A105.2.abstract


Gut 2011;60:A105-A106 doi:10.1136/gut.2011.239301.221
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Gastroduodenal
Gastroparesis and botulinum toxin


12-30-2013, 09:01 PM   #40
kimmidwife
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MLP,
It was one of the things mentioned. we will discuss all the conventional treatment options when we meet with the doctor in two weeks.

Last edited by kimmidwife; 12-30-2013 at 09:02 PM. Reason: wrong word
01-06-2014, 09:31 PM   #41
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How do you deal with the pain after eating?
My daughter has terrible pain and nausea every time she eats. I was wondering what some of you do?
Below is an article on pain in GP:
http://www.digestivedistress.com/pain-rx
01-06-2014, 09:36 PM   #42
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Zofran is great for nausea. Maybe try to have her use a very mild digestive enzyme like the papaya one and chew a few after eating a little... See if there's any relief. They are cheap and can be found in most supermarket vitamin areas/ drug stores or vitamin stores.
01-06-2014, 09:59 PM   #43
kimmidwife
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Thanks! Did you ever here of Swedish Bitters? I saw it on a website somewhere.
01-06-2014, 10:32 PM   #44
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I've taken bitters -- either Iberogast or just something like Angostura or what you can buy in a liquor store (all bitters have alcohol; very low content and you won't be using much anyway). I'm sure Swedish bitters are similar. I don't think it would hurt to try a few of these things to see if they ease her discomfort for now.
01-06-2014, 10:35 PM   #45
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I'm usually happy to try anything natural to see if it helps before I take another pill. Sometimes when I feel very nauseous, the bitters or enzymes help. Sometimes they aren't enough and I need zofran.
01-06-2014, 10:35 PM   #46
kimmidwife
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Thanks have you ever tried ginger? I read mixed things about it helping or not.
01-06-2014, 10:50 PM   #47
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I eat fresh ginger regularly in my food and make ginger tea. It can help with nausea and to settle the stomach also, but I feel like it may not be quite strong enough for the type of nausea that comes with the GP. My mother used to always make me chew fresh ginger when I was nauseous in the mornings and I would end up puking most of the time anyway.
01-07-2014, 12:43 AM   #48
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My son tried Iberogast for a while. I don't think it helped him but it was certainly worth a try. He hated the taste of it and called it Gagamieister, after I told him I thought it tasted like Jagermeister. It really isn't too bad in a cup of hot water, just tastes like a herbal tea.
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Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
01-07-2014, 03:12 AM   #49
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I would do some research on hypochlorhydria and gastroparesis. It may not be the issue here, but it is worth exploring. I feel like supplementing with the Betaine HcL helped me and very quickly when I was at my worst with it.

I'm not doing fantastic now -- which is probably more Crohn's related, but the feelings of constant pain and heaviness in my upper stomach and constantly throwing up food I had eaten many hours before or even the day before are gone.
01-07-2014, 02:35 PM   #50
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Nims22
Sorry to hear you are not doing well. This is so difficult. I am really worried that Caitlyn's normal GI doctor down here is not going to be of much help. I spoke with chop they will not take her on as a regular patient because we live more than two hours away even if we are willing to fly back and forth. I have been calling all over to try to find another motility specialist and there is no one nearby. There is a small group up in Orlando but I only found one review on them and it wasn't a good one. I am at my wits end here. Her doctor here won't even test for SIBO because they say they don't have the equipment for it.
01-11-2014, 02:57 AM   #51
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I'm sorry to hear you're having such a hard time with that. I hope you find someone good. I live in NYC and it still took multiple careless, clueless doctors and years of being sick before I was diagnosed with crohns. I don't have the greatest insurance though... Guess that complicated things.
01-11-2014, 10:48 AM   #52
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Kim, Mayo was willing to take Grace as a patient. There over 13 hrs away from us.
Maybe an option???
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01-11-2014, 03:54 PM   #53
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Nims22
Sorry to hear you are not doing well. This is so difficult. I am really worried that Caitlyn's normal GI doctor down here is not going to be of much help. I spoke with chop they will not take her on as a regular patient because we live more than two hours away even if we are willing to fly back and forth. I have been calling all over to try to find another motility specialist and there is no one nearby. There is a small group up in Orlando but I only found one review on them and it wasn't a good one. I am at my wits end here. Her doctor here won't even test for SIBO because they say they don't have the equipment for it.
Have you looked at John's Hopkin's Children's Center? Dr. Oliva Hempker is the head of the Pediatric GI. She's great. She saw my son as an infant and followed him for a number of years. At that time she was a resident. My daughter has now seen Dr. Oliva Hemker. There is a Believe in Tomorrw house that you can stay in or the Ronald McDonald house. You just have to co-ordinate housing with the child life specialist.

http://www.hopkinschildrens.org/pediatricGI/

http://www.hopkinschildrens.org/Mari...Hemker-MD.aspx
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Colonic Inflammation - granula mucosa dx 1/2014
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01-12-2014, 12:42 AM   #54
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FW,
We thought about Mayo and now I wish we had gone there instead of Philadelphia but mayo is not on our insurance. If we end up going somewhere else I think it will be OHio. The top guy for gastroparesis is there. A number of people recommended him including the people in Philadelphia
01-14-2014, 04:34 AM   #55
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Keep us posted as to which direction you head. Prayers!
Naturelover
01-14-2014, 11:58 AM   #56
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Today's visit was so so.he really thinks that this will pass and is temporary.Glad he is being positive although I don't agree with him.
Anyway he wants to try erythromycin again and add periactin
01-18-2014, 02:19 AM   #57
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Just wanted to share something with you -- I'm having a bad flare since Wednesday and a friend of mine brought me a bottle of stuff called DigestZen... I took a drop in water and rubbed some on my stomach and it really helped with nausea and cramping. I think it's pretty mild, especially for a child because just doing it externally feels good and the smell is pleasant. Maybe something you want to look into?
01-18-2014, 09:19 PM   #58
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Thanks Nims22,
I will look into it. I also wanted to know if anyone has tried domperidone and what their response was to it? How long until you saw an effect?
01-19-2014, 05:20 AM   #59
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Thanks Nims22,
I will look into it. I also wanted to know if anyone has tried domperidone and what their response was to it? How long until you saw an effect?
I was on it, it seemed to help a little at first, but soon stopped doing anything much at all. I think it's effects are supposed to be felt pretty quickly (possibly immediately, but it's some years since I was on it, so I may have misremembered).
01-19-2014, 09:41 PM   #60
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Thanks for getting back to me Unxmas. Nothing seems to be helping Caitlyn and she seems to be getting worse. Her nausea is getting more and more severe and now she keeps feeling like she is going to vomit as soon as she eats anything. She has vomited a little bit. She also continues to have pain when she eats. She eats about two bites before getting severely ill.
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