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Crohn's Disease Forum » Parents of Kids with IBD » Pediatric IBD specialty center in SE? New dx- GI dr stinks


11-12-2010, 12:30 PM   #1
susanfrances
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Pediatric IBD specialty center in SE? New dx- GI dr stinks

Hi all. I'm really new
here and just saw the parent's board. After many, many months of missing school, abdominal pain, cramping, gas, diarreah, and vomiting, our pediatric GI doctor ordered a CT for my 9 yo daughter "just to prove to her that there was nothing wrong". The next day his nurse called us to come back in. Inflammation and scarring of the terminal ileum. Not surprising to me. Both my mother and I have CD. Even with the results, he said her symptoms were not related, only caused by anxiety. No treatment. Nothing else. I obtained a copy of the CT from the hospital. The radiologist certainly felt it was IBD- w/ no info on family history- just clinical findings. I need a good specailty center to get us started on the right path, then we'll follow up at home. Any ideas?
11-12-2010, 04:14 PM   #2
DustyKat
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Hi Susan and

No prizes for guessing why you want go elsewhere! Boy that docs a real charmer isn't he.

Sorry, I can't help with any recommendations as you see by my profile, ! I hope someone can help you out and you can start to knock this on the head. Good luck and welcome aboard!

Take care,
Dusty
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11-12-2010, 06:13 PM   #3
susanfrances
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Thanks! I'm sure someone has an idea or two. It doesn't even have to be somewhere particularly close; but a good place to get us started. After Dr. Charming told my daughter "I see patients in cancer centers every week that tolerate their illnesses better",(in fairness, she was in tears holding her belly) she's pretty worked up about knowing this is just the beginning of the process-
Pediatrician won't prescribe any meds for the inflammation and we waited months to see the GI. I feel terrible not being able to help her more.
11-12-2010, 07:00 PM   #4
DustyKat
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I see patients in cancer centers every week that tolerate their illnesses better"
Oh that's just awful saying something like that. There's a vast difference between tolerating an illness and being in chronic pain. Watching my daughter I think the worst thing about the pain is the tolerance they build up to it. When Roo was in tears I knew it had to be bad.

I know how you feel about being helpless and I so hope you can find a GI soon that is far more compassionate and willing to listen to you and your daughter. It must be such a worry to you knowing there is inflammation there and nothing is being done about it. My thoughts are with you, good luck!

Wishing you the very best,
Dusty
11-12-2010, 08:20 PM   #5
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Susan, have you considered Vanderbilit Children's (Monroe Carroll Children's hospital) in Nashville? We see Dr. Sari Acra there. Sometimes the communication seems to be wanting a little but overall we've been very happy with Dr. Acra. I asked in a different thread if you'd tried to find someone in Chattanooga. I can't find the thread now.
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11-12-2010, 09:08 PM   #6
susanfrances
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That sounds like a very workable solution. My parents live in Nashville and we are up there frequently. My mom has found good care in that area for her crohn's disease. Last year she visited Cedars-Siani and they thought her doctors in Nashville were on the right track.
It's important for me to find someone who can understand that her anxiety is fueled by the abdominal pain and the worry that no one will beleive her. The CT w/contrast is undeniable though- surely thats going to help. I just hope the inflammtion doesn't smolder until we can get in; especially with the holidays coming up. I know there is a lot of controversy about the ibd7 prometheus profile, but it was a great help to me (and very accurate). I wonder if they would do one on her. We've had the ASCA and ANCA tests that were negative, but mine and my mothers were also. netwrok of others who have been there, done that!
Thanks for the tip! It's such a relief to have found this wonderful network!
11-12-2010, 09:13 PM   #7
David
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After Dr. Charming told my daughter "I see patients in cancer centers every week that tolerate their illnesses better"
My god. If a doctor told my child that he would have quickly found out his personal tolerance for pain. My kudos to you for handling things far better than I would have. I have no advice but also wanted to wish you the best. Crappy doctors suck
11-12-2010, 09:57 PM   #8
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On the way to the car I thought of 100 things I wanted to go back and tell him- but I was trying sooo hard to keep my composure in front of my very sick, very nervous sweetie. She also has asthma- which anxitey can make worse- but her pulmonologist doesn't say "Sorry you can't breathe. I'm not going to treat you, you just have to calm down, it's all emotional". Pulmicort is to lungs as Entocort is to guts. Simple fix to me. Pulmicort has been a life saver for us.
And, I agree....crappy doctors suck!
11-12-2010, 10:19 PM   #9
tica
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Hello My name is Betty, this is my first time here. Hello Susan. With my daughter (she is 15 now, she has ulcerative colitis) I went to see different doctors first my self, I did the interviewing first. Also look up their license. I found a wonderful doctor right here in Illinois. The problem with my daughter was that she was loosing to much blood, and we did not know how, it took months and the right doctor to find out that she had Colitis. I am so glad that I found this site, just to talk to other moms. If you would like his number let me know.Thank you!
11-12-2010, 10:59 PM   #10
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With the week that I have had, I definately won't turn down the name of a good GI. I don't care how far we have to go to find some one who is kind, compassionate, and knowledgeable about this disease- how it sometimes looks different than the day before, and may even look different tomorrow. But believing that it is there, and they can help.
Thanks
11-12-2010, 11:04 PM   #11
Crohns08
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Shands in Gainesville, Fla is good, and I believe there is a Mayo clinic in Alabama. Both are good places if you haven't tried them yet
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11-13-2010, 09:23 PM   #12
tica
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Hello Susan. Hang up there. Something I learned is that you as a mom have to do the best you can to feel good about something, even if you feel that your world is crashing down on you. Because at the end your child (children) will feel how you are feeling. Any how, the doctor name is Dr. Nagpal his number is (708) 684-5650in Illinois, also see Dr. Fox at Harvard university, he is one of the best in the world. I took my daughter to see him also, for a second opinion and he agreed completely with my regular doctor. Talk to you soon. Betty
11-14-2010, 06:23 AM   #13
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Hi Betty!! We'd like to hear your story too!! I hope your daughter is going ok now!
11-15-2010, 06:16 PM   #14
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Wow Susan, I just don't understand how these docs are pediatric specialists...doesn't that imply that they like children? I would suggest the Univ of Michigan but I know they won't take anyone w/o a referral. Your poor baby. I certainly hope you find something nearby like Mark's suggestion of Nashville. We also started my daughter on Omega 3 to help swelling naturally while you're waiting on meds... Tylenol doesn't seem to help her pain, but maybe it would work for you?
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11-16-2010, 09:17 PM   #15
susanfrances
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Thanks for the omega 3 tip. It's certainly worth a try! We checked in with our regular pediatrician this week. She thought IBD was clear in the radiologists report. Not her specialty, though. At least she did refill the Levsin, Dr. Evil wouldn't do that much, because afterall...she's fine.

Thanks for all the support. You guys are the best!
11-17-2010, 02:23 PM   #16
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I've seen the Omega 3 used a lot. I think there's even a Disney version in a gummy! We use a special order one by a company called Isogenix... it tastes like candy instead of fishoil Another way to get the Omega 3 into her is by trying Pediasure Sidekicks... they also have prebiotics and probiotics to naturally help the intestines. We're doing those everyday too.
11-20-2010, 07:55 PM   #17
AZMOM
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We also see Dr. Sari Acra at Vanderbilt and he is a very good doctor. I hope you can find someone new that you and your daughter can be comfortable with! I'm a big believer in having a good partnership between the child, the doc and of COURSE the Mom. :-) I hope things get better soon.

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