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Crohn's Disease Forum » Parents of Kids with IBD » Why won't the GO Dr prescribe new meds yet?


07-31-2016, 03:02 PM   #1
Lsmsmsmshs
 
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Why won't the GO Dr prescribe new meds yet?

My daughter was diagnosed with IBS about a year ago. She has steadily gotten worse. Hours and hours of diarrhea and severe abdominal pain that keeps her up all night. Also some pretty odd symptoms like her eye swelling,joints hurting, and so tired....ALL the time. (And she is NOT a lazy girl), all of these symptoms happen all around the time she has a terrible episode of prolonged diarrhea and abdominal pain.
We wound up in the hospital following a bout, IV fluids,pain med,anti nausea,sent home (labs,And US and xray negative)
Pediatrician got us into GI Dr. Just finished upper and lower GI(the suppository set her on fire). Colo showed "bumps" on her lower intestine. Dr said won't know anything definite until biopsies back.
"So what do we do if it happens again?,we have nothing to help with the pain or stop the diarrhea?". Dr said she didn't want to give anything until biopsies back. Bc if biopsies warrant New meds she doesn't want to prescribe antidiarrheals then have to take her off of them.
She is fine right now. She hurts all the time. But has had several really good days. She is used to pain. But just wanted some other opinions. I do like my Dr. She is great. But I am new to chronic pain and diarrhea.
07-31-2016, 03:11 PM   #2
my little penguin
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The issue can be anti diarrheals can cause a lot of problems if your dd has crohns .
The meds used to "fix" crohns has a host of serious possible side effects including lyphoma so doctors need to be sure it's crohns before prescribing them .

Add in its better to get a picture of the extent of the disease at the time of dx so they can tell if the med is working since what works for one person doesn't necessarily work for the next .
Typically biopsy results are read and back within a week if they are done outpatient In the US. Inpatient less than a day or two .

You can ask your dd Doctor if she can start EEN ( exclusive enteral nutrition ) formula only .
No foods just formula for 6-9 weeks while you wait
Some use boost or ensure
Others need more refined formula ( semi elemental or elemental - peptamen Jr or neocate Jr )
EEN is as effective as steriods in reducing inflammation in kids with crohns .

Let us know how things go
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07-31-2016, 03:31 PM   #3
Lsmsmsmshs
 
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That makes a ton of sense! Thank you! Another question. My daughter is 14. We have seen a direct correlation with her swollen eye ball(I mean,literally, it looks like you pushed the colored portion of her eye to the back and the white portion swells out and over the colored portion),crazy right? Only one eye at a time, and hurting in her joints. Specifically, her left hip, left wrist, right knee, and then comes the episode as spoken of before. But. When I told her GI Dr about this, she said she wasnt aware of any GI problem or disease causing eye problems. Ok. Call us crazy. But it is more than just ironic that she hurts so severely and has diarrhea so severely at the same time her eyes and joints and also extreme fatigue all set in. Your thoughts?
07-31-2016, 03:38 PM   #4
my little penguin
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See an opthamolologist there are specific eye conditions that are extra intestinal manifestions (EIM) of crohns
One of those is uvetis or iritis -
Opthamologist is a medical doctor who specializes in eyes
Not an optometrist

Second if her joints are hurts - there is juvenile spondyolarthritis (JSpA)
This is strongly related to crohns and can mirror Gi flares or flare independently.
A rheumotologist would be best to see about this
http://www.spondylitis.org/Learn-Abo...ndyloarthritis

And

http://www.spondylitis.org/Learn-Abo...thic-Arthritis

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127025/

On EIM

Little concerning your Gi didn't know about the eye manifestations of crohns
Ours has us check a box on when Ds sees an opthamologist
07-31-2016, 03:41 PM   #5
my little penguin
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Are you at a major pediatric Ibd center ???
If not you can get a second opinion quickly
07-31-2016, 03:45 PM   #6
my little penguin
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If it's uveitis then it needs seen immediately since vision loss can happen quickly
07-31-2016, 04:15 PM   #7
Lsmsmsmshs
 
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We are at Vanderbilt. I think the Dr is not wanting to lean one way or another without biopsy results. Validation of the eye and joint concerns may be something she wants to wait on appropriate diagnosis. Her thoughts are it still could be the most severe form of IBS and these other symptoms are from something autoimmune. I don't care what it is. As long as it has a med to help with the pain/diarrhea. I know one thing for sure, my girl is steadily getting worse.
07-31-2016, 04:35 PM   #8
ronroush7
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Sending support.
07-31-2016, 05:24 PM   #9
my little penguin
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Even if it just bad Ibs
The eye and joint symptoms really should be seen by opthamologist and rheumotolgist since there are plenty of other autoimmune disorders which cause eye/joint symptoms with sub clinical ( normal biopsied )Gi stuff
07-31-2016, 05:26 PM   #10
ronroush7
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Even if it just bad Ibs
The eye and joint symptoms really should be seen by opthamologist and rheumotolgist since there are plenty of other autoimmune disorders which cause eye/joint symptoms with sub clinical ( normal biopsied )Gi stuff
Agreed

07-31-2016, 08:08 PM   #11
CrohnsKidMom
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Sorry your poor girl is going through this. It is normal for the GI to wait until the biopsy results are back before starting treatment. Waiting is the worst though. Switching to a low fiber, bland diet might help with the symptoms right now, or EEN, as my little penguin mentioned. The symptoms you mentioned, including the eyes, could be GI related for sure. I hope you get those biopsy results in soon so treatment can begin. Take care.
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08-01-2016, 09:41 AM   #12
CarolinAlaska
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I third the necessity of seeing an ophthalmologist ASAP, and also a rheumatologist.
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Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
08-01-2016, 01:55 PM   #13
Lsmsmsmshs
 
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Thank you for all of the support and thoughts. I hope to get answers soon. Will keep everyone posted.
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