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TOPIC TITLE: Motility issues
Created On 11/3/05 12:55 PM
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Joelle
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11/3/05 12:55 PM
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My thirteen year old daughter had problems with her gall bladder not emptying properly, they called it Biliary dyskensesia. We had her gall bladder removed last November, and now we are having similar problems with her stomach. They aren't sure whether this is a syndrome, or an unrelated problem. She also has reflux. She is taking a huge amount of medication, and we are thinking of taking her out of state to see a specialist in this field in Milwaukee. Does anyone have advice on doctors, or on anything connected with this? We'd appreciate all the advise we can get. She has stomach pain/ headaches three or four times a week, lasting several hours, even on all of the medication.
 
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chanieF
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11/3/05 8:56 PM
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not sure if i'll be able to help, but-
what testing have you had done recently? what are her symptoms? what's her diet like?
 
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Joelle
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11/4/05 7:26 AM
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Her most recent scope was in January- showed a lot of bile floating around and irritation. She had an MRCP-an MRI of her abdominal area- showed that her stomach was full at a time when it should have been empty. Her symptoms are abdominal PAIN, above the waist, sometimes spreading to the left. She used to have more pain on her right, but now her gall bladder is gone. She also gets very nauseous, occaisionally throws up, has a lot of reflux washing up into her throat, and recently gets bad headaches along with everything else. She stays away from almost all reflux foods and eats lightly in general. We are probably going to try her on a six small meals a day idea, at the advice of a different gastroenterologist.
 
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hb
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11/4/05 4:10 PM
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are you going to dr rudolph in milwalkee? We've seen him, he's an amazing dr and person.
 
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Joelle
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11/5/05 7:48 PM
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Yes, Dr. Rudolph is the one that we are going to see. Our doctor here thought it would be a good idea. Did you do testing when you were there? He really wants us to do a CT with contrast and another scope. I'm a little nervous because my insurance will only pay 70% of their fee schedule, and I may be out several thousands of dollars. I'm trying to convince him to let me have my doctor do the tests, since then I'd just have a ten dollar copay. His nurse said that he really likes to do the tests himself.
 
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yaldatova613
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6/7/06 1:00 PM
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These symptoms sound exactly like what I have been going thru the past 2-3 years. Whatever ended up happening? Did "Dr.Milwaukee" help you? Is the "dysmotility" gone?
 
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ayiddishemommeh
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10/30/06 12:57 AM
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O.K. I'm tired . I typed for more than an hour all about my son's medical complications. I will not sit here for another hour just because this smart computer decided to loose my letter. I'ts 12:57 (a.m. of coarse) ,the kids are almost (?) getting up, and I still marvel at this outstanding modern technology that should oversmart us all. Well maybe it was born w/ an undiagnosed syndrome that will be revealed by the next Mr. Bill Gates. So far this computer was obv iously not poked enough, v'hu rayuh ,my previous post remained unposted.
Now long story short. #1- Did anybody experience the 3 day motility testing,& how would you rate the pain (nuuuuuuuh, were talking about a 300 lb. scale.)? #2- What about Dr. Rudolph himself, do you tokeh believe he's the best out there . avadeh only the aibirshter is best ,were talking about the rofim. Is he exempt of those that will go to gehenim? #3- Wouldn't it be nice to also catagorise the navigation by doctors names? I mean, I say that because usually I meet all (I shall hope that is all) yiddisheh patients in Dr. offices.
Please reply. I need chizuk, information, & anything helpful (could also be a lottery ticket if it's positively the wining number. If you can bring me moshiach, you will absolutely get schar (although I believe thats not gonne happen via internet). O.k. thats more than enough for now. good bye.
ayiddishemommeh


Edited: 11/2/06 at 11:26 PM by ayiddishemommeh
 
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Joelle
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12/1/06 7:18 AM
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Hi! Well, it's been over a year since I've written. I wasn't getting any more responses, so I gave up. I just thought to check, so if anyone is paying attention, I'll update the story. We did end up going to Dr. Rudolph. It was a whirlwind trip. Not only did we see him and his partner, she had a CT and a scope and saw the pain clinic. They felt that it really wasn''t a motility problem, but abdomonal migraines, which they treated her for, with more meds of course. The pain clinic was helpful to just learn some easy stategies for coping with pain. Although everyone was very nice, I must say that a year later, this seems like a misdiagnosis. At this point we feel like she has an undiagnosed (as of yet) syndrome and we're seeing a rheumatologist. As this stomach thing wound down, she had an attack of pain in her gall bladder area, which turned out to be her liver. That was inflamed for a while, no one knows why. Next was her spleen. Then her joints got swollen... Whatever. B"H, we are really liking the rheumatologist that she's seeing at our own children's hospital (B"H, no more out of network charges!), and she's been feeling great with the help of Clelbrex. Mysteriously it has dramatically helped her reflux that she had constantly for over two years! If there's anything I can do to help-please let me know! Dr Rudolph is pediatric. Did you need someone for adults?
 
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ayiddishemommeh
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12/3/06 2:38 AM
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A gut vuch. So finally someone colored the index file blue.

we need a peds. dr. our trouble maker is 3 yrs.

I understand your frustration. We either don't have a dx yet. So far we're groping in the dark. Maybe one day for both of as IY'H ?

 
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shaulismom
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3/23/08 10:02 PM
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hi e/o.im new here.i need to vent.anyone know about delayed gastric emptying?my 2 yr old was dx w/it when he was 10 months old.also recently added to the list was cyclical vomiting. is anyone familiar w/either of these 2 things?anyone know of any miraculous cures aout ther that his drs dont know about?he is on prevacid(oh-forgot to mention he also had gerd),erythromycin,and zofran.hes not tube fed but i feed him seriouslyevery 2 hours and i have no life but him(but i really do have other kids,a home,etc that need my attention)i acn also say that in his 2 years i have never ever left him in the care of anyone else but me(except my husband for little bits of time here and there)i feel like i cant let him out of my sight or he will start to vomit again and end uo in the hospital again.im not sure that i feel better with this venting thing,but i appreciate being given the chance toany comments are welcome.esspecially one with cures
 
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