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Crohn's Disease Forum » Parents of Kids with IBD » This Must be a Flare


 
02-23-2013, 11:37 PM   #1
DanceMom
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This Must be a Flare

Since her EGD/colonoscopy on January 17th A has been doing well. The best she's done in years actually. The prep seemed to make her feel better though her doctor warned me that is usually temporary. The antibiotics helped the diarrhea, and I thought that maybe our problems were gone. Slight denial maybe, but she's been so good lately.

But Friday night I could tell things were changing. The ride home from dance was a very quiet one, and when we got home she cried when I made her run her dances. She never cries when she practices. Ever. When I woke her up this morning for competition she barely ate and said her throat and stomach hurt. All day she was pitiful and cried at the drop of a hat. This is how it starts - with her saying her throat and stomach hurt. She wants to sleep all the time. Then come the headaches. I'm totally bummed.

So my orders say to call the GI so he can prescribe a 5-ASA medication. From what I understand this is not a risky med, but I do worry about side effects. I suppose the potential benefits outweigh the unlikely risks in this case though and I'm desperate to get her feeling better again. Any advice or suggestions are appreciated.
02-24-2013, 01:13 AM   #2
upsetmom
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Hi DanceMom
My daughters been on pentasa for a few months with no side effects.
The only thing is this is a milder drug and a few times they've had to put her on flagyl to get things under control again.

Good luck
02-24-2013, 01:19 AM   #3
CarolinAlaska
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sorry to hear it. I hate this disease.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
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02-24-2013, 01:23 AM   #4
Jim (POPS)
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5 ASA meds are light treatment for crohns, in fact, alot of GI Dr. don't use them for crohns. I have taken them off and on with no roblums.
02-24-2013, 07:25 AM   #5
Dexky
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DanceMom, read through this thread...http://www.crohnsforum.com/showthread.php?t=44963

I think I can speak for most parents on here when I say that mesalamine is one of the least scary things our kids have been/will be on. I hope it helps her but prepare yourself, they will probably recommend something much more frightening as a maintenance med. Good luck!
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02-24-2013, 09:42 AM   #6
my little penguin
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^^^ yeah that!!!
Most Gi 's compare it to giving aspirin for brain tumor.
It may help a small amount but pretty much useless by itself.
That being said I was afraid to give it to DS when he was first dx.
Don't be afraid to speak up if its not working in month.
That is typical and indicates she needs something more effective.
Good luck
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02-24-2013, 11:59 AM   #7
Hope345
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Dancemom,

How is your daughter doing?
I was just wondering what age she is. My daughter is 14 and wants to join the dance team next year.

She is on Asacol, remicade and the coritfoam. If you have any questions let me know, I would be glad to help.
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Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues
02-24-2013, 07:58 PM   #8
DanceMom
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I understand that the risk of side effects is low, but I don't take any medicine lightly. Especially something that is likely to be a long term med. It just makes me nervous.

Julie, A has been dancing competitively since she was 3. What started as a fun hobby has become a real passion for her. She's amazing and I admire her for it. Her Pulmo encouraged her to be as physically active as possible and attributed her improvement in asthma symptoms to her athleticism. Her new GI doesn't seem too excited about her dancing and has mentioned that it may be too stressful for her. As long as A wants to and is physically able to dance she will. It makes her happy and keeps her going.
02-24-2013, 08:09 PM   #9
CarolinAlaska
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Then she should! When it becomes a nightmare increasing her symptoms and worsening her illness then you both can reassess that decision.
02-24-2013, 08:15 PM   #10
my little penguin
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hugs- trust me-
none of the parents here are suggesting putting your child on any meds is an easy thing to do.
I agonized over pentasa for a very long time.

But from a parent who has been dealing with it for over a year as have others on this forum
we just wanted to let you know out of all the meds to be put on.
most of us would jump at the chance to go back to those early meds - if they worked.

as izzismom said"even scary meds start to look like baskets of kitten" when they start to work.

Hopefully you wont get to that point and she can take the pentasa and be fine.
I think most were trying to prepare you realistically Pentasa only works for a very small percentage of kids with IBD.


I watched my child suffer as have most on here for many months while we tried the less scary drugs one after another.
being very cautious in our approach before ruling out each drug.
at one point ds told me "mommy they don't make a drug that can fix me yet"

We found our drug for Ds and I hope you find yours for your daughter very quickly- since it breaks a mother's heart to make these decisions especially when its your child in pain.

AS one of the GI's said to us early on - there is no right or wrong path to treat this disease - it only matters that you find a therapy that works for your child.
Since IBD kids all react differently to different meds it is always a guessing game.
02-24-2013, 08:29 PM   #11
DanceMom
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Maybe the potential side effects is only part of my fear. Maybe the possibility that it may not help is what I'm really afraid of. I'm not sure. I just know I'm anxious. But MLP, your post somehow made me feel a bit better. Thank you.

A question for those of you whose children also have asthma.....does your child's asthma tend to flare when their IBD flares? A has been off her daily asthma med for 2 years now and has been doing well. But now she has a lingering cough that has gotten much worse over the last 24 hours and I'm wondering if the whole inflammatory process is kinda taking over multiple systems.
02-24-2013, 08:53 PM   #12
my little penguin
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In a word
- yes
DS has inflammation in his
Lungs - asthma
Skin- dermitis
Eyes- limbal vernal keratoconjunctivitis
Head - migraines
Plus from crohn's he gets mouth ulcers, joint pain , and vasculitis.

Thankfully everything doesn't flare at once usually.
But asthma wise we had to increase his maintence meds alot prior to dx and when things were off.
Let her pulmo know about it as well as anything else.
02-25-2013, 06:19 AM   #13
Dexky
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Something else to remember is that any time a new med is introduced, blood tests will be done more frequently to monitor possible side effects.
02-25-2013, 06:38 AM   #14
DanceMom
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She woke up at 4 AM with a temperature of 102.4. Would she have a fever that high from a flare or is this likely some sort of virus as well? She seemed to be following the exact same pattern she typically does for a flare but she doesn't usually have any sort of fever with it.
02-25-2013, 04:49 PM   #15
Hope345
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Our daughter had her first temperature since being diagnosed with Crohns about a month ago. It lasted for one week off and on. No other symptoms. There was a flu going around that had only that symptom "I heard", so I wasnt concerned it was Crohns. But low and behold, she did have a flare 2 weeks later. Not sure if a virus set off the flare, or the temp was due to the flare. The GI nurse thought a temp without other noticeable flu like symptoms probably had something to do with Crohns.
02-25-2013, 04:52 PM   #16
my little penguin
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Hugs..
For us Gi gave a clear sheet which states they want a call on any and all fevers .
02-25-2013, 05:23 PM   #17
DanceMom
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Well, I decided I would call the GI and let the nurse know exactly what was happening so they could decide what was best for her. I called on my way home from work and on my way to pick up A from my Mom's house. She said it sounded like a virus (sometimes I think she brushes me off because A's case doesn't seem severe enough) but that she'd get with the doctor and call me back. As I walk in the house A is screaming, "Somebody get in here and look at this!" So I run to the bathroom and look in the toilet and there is blood, lots of blood. It is mixed in with the stool, which is formed, but it is undeniably blood. A doesn't usually have blood in her stool, and if she does it is always questionable as to whether it is really blood because there isn't much of it. So I took a picture as "evidence" because I didn't want to feel like I was being brushed off again.

The nurse called back just a few minutes later and I told her the new news. She said that the doctor was debating on putting her on probiotics or starting something similar to an antibiotic (the name of the med started with an "f"....fluoro something I believe....) because he thought the bacterial overgrowth was probably back (at least he didn't think it was a virus!). But with the bloody stool she thought it was best that A be seen as soon as possible so she's going in tomorrow afternoon.

I admit, I'm very freaked out by the blood and high fever because those aren't typical symptoms for A. At the same time, I'm glad the blood happened (and I could get a pic of it) because I think it proves that this is more than just a virus.
02-25-2013, 05:25 PM   #18
my little penguin
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Blood can be scary the first few hundred times .
Flagyl would be the drug.
Good luck in the am
02-25-2013, 05:58 PM   #19
CarolinAlaska
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Very scary. We haven't had to deal with blood either. I know it would be unnerving, but I would comfort myself that a lot of others have had to deal with it, and it will be part of the package.
02-26-2013, 12:40 PM   #20
Hope345
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Dancemom,

Blood has been an issue for our daughter for 2 years. Lots of it. In B's case, she has Crohns in three parts of her colon, including the descending colon and rectum. What helped the most was cortifoam. We started it 2 months ago and the blood, pain and mucous stopped over night.

Let us know how she is doing. Hopefully they do a stool cult. and check for C.diff as well. Our GI is always running those.

hugs to you both
02-26-2013, 06:16 PM   #21
DanceMom
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Quick Update: GI is checking for C Diff and ordered a Sitz Test. He thinks she's constipated. After the C Diff test she is to start Florastar for a month because he thinks the bacterial overgrowth is back. I'm annoyed.
02-26-2013, 06:23 PM   #22
my little penguin
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Hugs ...
So sorry ...
Can you get a second opinion at an improve care now center??
Or major Ibd center ?
ImproveCareNow is working to transform care, health and costs for all children and adolescents with Crohn's disease and ulcerative colitis. Since ImproveCareNow began, the percentage of kids enrolled in the program who are in remission (feeling well, no symptoms, fully active) has increased from 50% to over 75% all without new medications.
ImproveCareNow is a non-profit that relies on the generous support of donors, funding from grants and participation fees paid by care centers in our network.


Care Centers
The ImproveCareNow Network includes 51 participating care centers (listed below), spanning 28 states and London, England.

Arkansas

Arkansas Children's Hospital Little Rock, AR
California

Children's Hospital & Research Center Oakland Oakland, CA
Children's Hospital Los Angeles Los Angeles, CA
UCSF Benioff Children's Hospital San Francisco, CA
Colorado

Children's Hospital Colorado Aurora, CO
Connecticut

Yale-New Haven Children's Hospital New Haven, CT
Delaware

Nemours Children's Clinic | Alfred I. duPont Hospital for Children Wilmington, DE
Florida

Arnold Palmer Hospital for Children Orlando, FL
Georgia

CHOA - Children's at Egleston| Emory Children's Center Atlanta, GA
CHOA - Children's at Scottish Rite Atlanta, GA
Illinois

Advocate Children's Hospital, Oak Lawn Oak Lawn, IL
Advocate Children's Hospital, Park Ridge Park Ridge, IL
Children's Hospital of Illinois | University of Illinois Peoria Peoria, IL
Indiana

Riley Hospital for Children Indianapolis, IN
London, England

Great Ormond Street Hospital London, England
Maine

Barbara Bush Children's Hospital at Maine Medical Center Portland, ME
Massachusetts

Baystate Medical Center Springfield, MA
Boston Children's Hospital Boston, MA
MassGeneral Hospital for Children Boston, MA
Michigan

Helen DeVos Children's Hospital Grand Rapids, MI
University of Michigan | CS Mott Children's Hospital Ann Arbor, MI
Minnesota

Mayo Clinic Rochester, MN
University of Minnesota Minneapolis, MN
Missouri

Children's Mercy Hospital Kansas City, MO
St. Louis Children's Hospital | Washington University St. Louis, MO
Nebraska

Boys Town National Research Hospital Omaha, NE
Nevada

Pediatric Gastroenterology & Nutrition Associates Las Vegas, NV
New Hampshire

Children's Hospital at Dartmouth Lebanon & Manchester, NH
New Hampshire's Hospital for Children Manchester, NH
New York

Children's Hospital at Montefiore Bronx, NY
Kravis Children's Hospital at Mount Sinai New York, NY
North Carolina

Levine Children's Hospital Charlotte, NC
University of North Carolina at Chapel Hill Chapel Hill, NC
Ohio

Cincinnati Children's Hospital Medical Center Cincinnati, OH
Nationwide Children's Hospital Columbus, OH
Rainbow Babies and Children's Hospital Cleveland, OH
Oklahoma

Oklahoma University Medical Center Oklahoma City, OK
Oregon

Northwest Pediatric Gastroenterology | Randall Children's Hospital Portland, OR
OHSU Doernbecher Children's Hospital Portland, OR
Pennsylvania

Children's Hospital of Philadelphia Philadelphia, PA
Penn State Hershey Children's Hospital Hershey, PA
South Carolina

Greenville Children's Hospital Greenville, SC
MUSC Children's Hospital Charleston, SC
Texas

Cook Children's Fort Worth, TX
Dell Children's Medical Center of Central Texas Austin, TX
Texas Children's Hospital Houston, TX
UT Southwestern Medical Center | Children's Medical Center Dallas Dallas, TX
Vermont

Vermont Children's Hospital at Fletcher Allen Burlington, VT
Virginia

Children's Hospital of the King's Daughters Norfolk, VA
From:
https://improvecarenow.org/about/who-we-are
02-26-2013, 06:25 PM   #23
my little penguin
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Keep in mind most 2nd opinion places take about three months to get an appt from when you contact them.
So if you start now you can always cancel later if you don't need it kwim.
02-26-2013, 08:10 PM   #24
DanceMom
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This doctor does specialize in IBD and for whatever reason he doesn't think she has it. Instead, she's constipated, has IBS, has SIBO, she's dehydrated, and has a virus. I'm just really angry right now because she continues to have bloody stools and cry that she's in pain and all I have to offer her is a glass of water because the doctor says she's dehydrated. And don't even get me started about the $80 probiotics that the insurance won't cover.....
02-26-2013, 08:14 PM   #25
my little penguin
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Please get a second opinion
DS has mainly constipation as his main sign.
02-26-2013, 08:32 PM   #26
DanceMom
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This is our second opinion, lol. I want to trust this doctor because I like him. He takes time with us and I believe he really does want to get A healthy. I just think he's being overly cautious with diagnosing IBD. Because her MRI and biopsies were iffy and her fec calp was within normal limits he just isn't convinced.

I will look into Arnold Palmer. In the meantime I have no choice but to trust this doctor and play the game.
02-26-2013, 09:09 PM   #27
my little penguin
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Never easy
DS had normal scope
Normal mre /ct
Blood work normal

But has chronic inflammation on his biopsies as well as alot of EIM's that the do. Could objectively see vs self reported .
02-27-2013, 06:52 AM   #28
DanceMom
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A's biopsies showed chronic as well as acute inflammation but apparently it was not severe enough to be considered IBD. Her biopsies 1 year prior didn't show any inflammation despite her symptoms so perhaps we are headed in the right direction as far as a diagnosis is concerned.

I suppose what made me so angry is that he changed the game plan. Because she responded so well to the Clindomycin he is now thinking that her problem is SIBO and not IBD. Not sure if SIBO can explain the inflammation in the colon and rectum but.....
02-27-2013, 11:06 AM   #29
Hope345
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Have you been able to see the colonoscopy yourself? If it is patchy inflammation then that is often how they diagnose Crohns. If you see inflammation, then a clear area, then more inflammation....
If he thinks it is bacteria overgrowth, it could still be crohns, what does he think crohns is?

You also might look into Dr Borody's approach to IBD. He does what he calls an ANTI-M.A.P. treatment. He also believes IBD is caused from a bacteria overgrowth and treats with three antibiotics over a 2 year period. It has been very successful.

You could still use the cortifoam along with this treatment.
02-27-2013, 12:59 PM   #30
CarolinAlaska
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Sounds like your GI lives in a bubble too.
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