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06-20-2012, 12:41 PM   #1
Breanna's mom
 
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Location: Clyde, Ohio
Breanna's mom

Poor Breanna isn't having as good of a response as we hoped for on the medications! She continues with the abdomen pain and diarrhea with occasssional urgency. The GI doc called today and increased her Prednisone to 40mg and keeping her Imuran at 100mg at this point. He ordered stool cultures to rule out C-Diff as well. We are scheduled for MRE at U of M hospital Monday so praying she gets some relief between then and now. Being 'new' to this whole diagnosis can someone tell me if 40mg of Prednisone is 'high' for her age and this disease? Just little frusturated but I know it will get better! So they say!
06-20-2012, 01:25 PM   #2
Tesscorm
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Hi Breanna's mom,

I don't have experience with prednisone so can't help you with the dosage.

However, I hope you get some answers from the MRE on Monday!

I read on your other post that your doctor didn't believe EN was necessary at this point; please note that EN has comparable success rates at inducing remission as do steroids, however, the success rate is higher if the crohn's is in the small bowel. Regardless, the formula may still help Breanna, is anti-inflammatory, is easily digested providing bowel rest and will provide her with all the necessary nutrition (and NO side effects). As far as I know, it can be used together with any medication so she could certainly continue on with her currents meds. For some reason, it is much more commonly prescribed (often the first treatment option for children) in Canada, Europe, etc. but not in the U.S. (not sure why...).

The formulas can be ingested orally (there are a number of shakes available) or through Naso-Gastric tube (as my son does). The normal course of treatment is for the formula only for approx. 6 weeks with regular food then gradually reintroduced. (So, not necessarily the easiest treatment for a child to comply with ) Perhaps it is worth discussing this with your GI again???

Regardless of the treatment plan, I hope Breanna finds some relief quickly!

(As your daughter's diagnosis is fairly recent, you may be interested in a presentation recently posted by My Little Penguin in the Parents of kids w/IBD. Here is the link to the posting... http://www.crohnsforum.com/showthread.php?t=37599

and the link to the presentation

http://www.naspghan.org/user-assets/...2ndEdition.pdf


Good luck!
__________________
Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
06-20-2012, 05:28 PM   #3
AZMOM
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Hey Breanna's Mom - I haven't read her story yet but wanted to tell you Claire was at 40mg during a bad flare right at her 6th birthday. How old is Breanna?

Hang in there.......

J.
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
06-20-2012, 05:45 PM   #4
my little penguin
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Second the EN- we have done it with other meds (6-MP) and later Pred.
My DS is 8 and on 30 mg of pred. We were told once 40 mg is as high as they typically go with kids but none of our kids are typical.

I assume they are having her do blood draws at least every two weeks to check on the ALT/AST/CBC etc... levels while on imuran.

Hope the MRE can give you some answers.

06-21-2012, 06:28 AM   #5
Breanna's mom
 
Join Date: Jun 2012
Location: Clyde, Ohio
AZMOM- Breanna is 9 years old and thank you! We are certainly tryig to!
my little penguin- They have been drawing labs weekly because of her critical anemia issue's at this time. Breanna has also been on 30mg Prednisone for the past 2 1/2 weeks until yesterday when they increased it. Thank you for the info! I really appreciate it! Hope all is well with both your children as well!
06-21-2012, 08:32 AM   #6
Keepingfaith
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Hello Breanna's mom!

The Prednisone dosage of 40 mg is a relatively 'high' dose for someone her age because 'we' have to consider her growth. With that being said, I and many other people from the age of 8-to teen years have been on higher doses than that, I'm talking 60mg doses. I still haven't been able to get off Prednisone since October & I have never been in a 'remission'. Almost everyone on this forum will tell you the first few medications they've tried did not work for them. Everyone is different so everyone responds differently.

It could be that she isn't even digesting the Prednisone? In November I was in the hospital for a month so I could receive IV prednisone & WHAT A DIFFERENCE! I agree with the others, give EN a try and/or discuss switching medications with her GI.

HUGS! Hope she feels better!
__________________
Current medication:
Entyvio
Imuran
Entyvio
Prilosec
Protonix
Seasonique
Noritriptyline
Steroid suppositories
Canasa suppositories

Diet: Feeding via J-tube

DX: Crohn's Disease, Juvenile Rheumatoid Arthritis, Endometriosis, Gastroparesis

Previous Medications:
Remicade- Drug Induced Lupus, Humira, Prednisone,
Entocort, 6MP, Methorexate, Amitriptyline, Asacol, Flagyl, Apriso, Cimzia, Cipro, Sulfasalazine etc. You name it, I've tried it.
06-21-2012, 11:04 AM   #7
izzi'smom
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Second the EN- we have done it with other meds (6-MP) and later Pred.
My DS is 8 and on 30 mg of pred. We were told once 40 mg is as high as they typically go with kids but none of our kids are typical.

I assume they are having her do blood draws at least every two weeks to check on the ALT/AST/CBC etc... levels while on imuran.

Hope the MRE can give you some answers.


Also hoping the MRE gives you some solid answers. Our Pred dose was a bit lower-I believe the highest we got was 30.
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
06-21-2012, 05:31 PM   #8
dannysmom
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When Danny was 12, 30mg was his pred dose. It only seemed to make his symptoms much worse. Good luck with your testing and hope you get a treatment to help soon!
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Jeanne
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)
06-27-2012, 03:08 PM   #9
DustyKat
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Hey Breanna's mom,

How did the the MRE go?

Is Breanna doing better on the increased dose of Pred?

Thinking of you,
Dusty. xxx
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Mum of 2 kids with Crohn's.
06-28-2012, 06:14 AM   #10
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DustyKat- We are still waiting on results of the MRE. I left a message with the office nurse so hoping to hear something today. We havent seen much of an improvement at all with the Prednisone increase! :-( Amazingly enough she lost a few more pounds again and just seems SO TIRED! She is scheduled for a lab draw again today so Im a little anxious to see if the increase in Prednisone has had any positive effect in her levels. Thank oyu for keeping us in your thoughts!! It's greatly appreciated!! I will certainly update as soon as lab levels come back and/or MRE results are known! :-)
06-28-2012, 06:26 AM   #11
DustyKat
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Thanks for the update!

I hope you get the results soon, there's nothing worse than waiting...ugh!

I hear you about the Pred, I think it probably stabilised my son's condition to certain degree but didn't improve it. He also continued to lose weight on it. As it was it turned out he had other complications brewing away. I hope in Breanna's case it is just a glitch and she is soon feeling much better!

Good luck with all the results!...

Dusty. xxx
06-28-2012, 02:07 PM   #12
Breanna's mom
 
Join Date: Jun 2012
Location: Clyde, Ohio
This disease just makes me want to SCREAM!! Breanna's labs are back and don't get me wrong I do understand it will take time but I was PRAYING that a month's time on the medicines would show some improvement, which is has not!! Her HGB is down again to 10.6, HCT to 32.6, MCV to 76.2, MCH to 24.8, MCHC to 32.5, MPV to 8.5, Sed Rate up to 42, ALT down to 6, ALP down to 107, Total Protein down again to 6.4, Albumin down to 3.2 and CRP back up to 2.0!! No wonder she isn't feeling good and feels exhausted!
Just wish it would at least show a little bit of improvement! :-( No word on MRE as of yet but believe me I have left 2 messages today with the doctors office!
06-28-2012, 02:19 PM   #13
Sascot
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I think there are alot of us screaming with you!! This disease sucks. Sorry your daughter isn't feeling better, it is very frustrating. My son had to come off his meds because his liver wasn't coping so we are back to the start again. Our docs said it would take a minimum of 6 - 12 weeks for Aza (which is same as Imuran I think) to even start working, so a month is probably not long enough to see an improvement yet. Hang in there, hope you get results of MRE soon!
06-28-2012, 03:37 PM   #14
DustyKat
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I'm so sorry to hear this hun...

I so hope the MRE is able to provide answers for you. Given her apparent lack of response to Pred do you think it might be the time to introduce EN? I don't how bad it has to get for the doc to agree but these latest bloods and her continued weight loss should be more than enough to prompt him.

In my thoughts,
Dusty. xxx
06-28-2012, 06:16 PM   #15
Breanna's mom
 
Join Date: Jun 2012
Location: Clyde, Ohio
Well I dont know what to think about her MRE results! The nurse called this evening and said the MRE showed no new disease but does show there is Crohns present in small bowel as well which was what the GI doc assumed due to her Colonoscopy results already. I asked if she recieved the lab results because obviously I had them I assumed they did but she said they havent recieved them out. BUT then she proceeded to tell me that we need to keep Breanna on Prednisone 40mg and the doc will see us Monday to discuss what the plan will be. SO if they kept her Prednisone at 40 instead of dropping to 30 without even seeing labs I guess I am to assume the MRE was the reasoning for the change?!! Guess it's back to the waiting game until Monday!
06-28-2012, 08:46 PM   #16
Tesscorm
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I'm sorry that you haven't seen more positive changes in Breanna or in her labs!

I also urge you to ask her GI again about EN. It's success rate at attaining remission (comparable to steroids) is reason enough to try it but, even if it doesn't achieve remission, it will provide her with all the necessary nutrition! I've never heard that there is a conflict with any medication so she should be able to continue with her meds if her GI prefers... I think many GIs worry that compliancy will be an issue with kids (during the 'no food' period), and it is difficult , but... there are so many reasons to at least attempt the treatment... My son was allowed broth, jello, clear fluids, etc. during the 'no food' period which may have helped a bit... but, be prepared, many GIs do not even allow the broth, etc.

I hope you're able to get some answers and direction on Monday!
06-28-2012, 10:38 PM   #17
DustyKat
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They may have kept her at 40 because of the scan results but could they also have kept her there because of her ongoing symptoms?

I hope all goes well over the weekend and good luck for Monday! We are waiting right along with you!

Dusty. xxx
06-30-2012, 05:41 PM   #18
crohnsinct
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Breanna"s mom: I am just getting back from our mission trip and getting caught up. I am so sorry for the frustration and lack of improvement. I second the EN request and will be praying that Monday brings you some clarity in understanding and direction.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
07-02-2012, 08:50 PM   #19
Breanna's mom
 
Join Date: Jun 2012
Location: Clyde, Ohio
We had Breanna's follow up appointment today. He said that Breanna isn't responding to the Prednisone, which isnt normal. The labs are showing no improvement and she has lost weight again. He is going to give her 1 more week on our current medication regimen and retest her labs on Thursday. It looks as though she will have to be switched over to IV Remicade if no improvement he said. He added an extra 250 calories through the nutritional drinks in hopes of her gaining a little weight or at least maintaining current weight. She spiked a fever last night of 102.3 and tonight of 100.9 but I believe she may have an ear infection on top of everything else. Keeping a positive attitude because at this point we just want her to feel better! Hope everyone has a safe and relaxing Fourth of July!!


Meds; Imuran 100mg
Prednisone 40mg
Multivitamin with iron
Prilosec 20mg
07-02-2012, 09:05 PM   #20
Clash
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My son is older, 15, and he was put on prednisone starting at 40mg, he was at that level for 8 weeks but it did not help his inflammation either. We knew from the beginning that he would be on Remicade, the diagnosing GI just put him on pred. while we were waiting for ins. approval and appointment with Ped GI. Our Ped GI said pred works for different people at different levels and sometimes not well at all. I really hope that Breanna is feeling better soon. Remicade has been really great for C.
07-02-2012, 09:14 PM   #21
Breanna's mom
 
Join Date: Jun 2012
Location: Clyde, Ohio
Clash- Thank you for the response! I am SO glad to hear your son is doing better with the Remicade. I am honestly anxiously awaiting for her to start the treatment mainly so she feels better and can enjoy the rest of her summer! Thank you again!
07-02-2012, 09:32 PM   #22
crohnsinct
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O is also on Remicade and while it didn't work 100% and needed the help of EN it has been great for us. Even though there is suppressed immune system she has been the healthiest one in the house! I hope that you have wonderful success with it and that Breanna gets relief very soon!
07-03-2012, 06:33 AM   #23
DustyKat
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I'm so sorry to hear that Breanna isn't responding to the Pred hun. But hoping more than anything she has a wonderful response to Remicade if that is what is needed.

Good luck!

Dusty. xxx
07-03-2012, 08:11 AM   #24
Tesscorm
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A friend's daughter was quite sick last summer (with Crohn's) and surgery was almost a certainty... she started Remicade in the fall and has been great ever since (and NO surgery!)! I hope Breanna responds just as well!!
07-03-2012, 06:00 PM   #25
Catherine
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Hopefully Remicade is just what she needs to start the process of recovery.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
07-05-2012, 05:01 PM   #26
Breanna's mom
 
Join Date: Jun 2012
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Breanna had her weekly lab draw this morning and an hour later my cell rang with a call from her GI doc. Her sed rate was is in the 60's, CRP at 3.1, all iron levels showing anemic still and new issue of her platelet count being elevated. SO guess where we are? YUP Admitted to the childrens hospital an hour away from home! :-( She has received an IV bag of NS within an hour, just spiked the Potassium bag and awaitng a strong dose of IV Steroids all the while continuing the Imuran 100mg. Hopes is to help give a gentle push closer to remission since the orals are obviously not working! Keeping our fingers crossed this works!
07-05-2012, 05:13 PM   #27
crohnsinct
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So sorry for the set back but glad you are getting the help you need. I hope she responds quickly and it all sorts out well for you both!
07-05-2012, 07:30 PM   #28
AZMOM
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Crossing fingers that a little inpatient support will help you turn the tide.....in our experience, high platelets go along with inflammation.........

Hugs -

J.
07-06-2012, 04:41 PM   #29
DustyKat
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How is it going hun?

Are things settling down?

Yep, I'm with J...increased platelets often mean tissue damage is present, so inflammation.

Good luck! You are in my thoughts...

Dusty. xxx
07-06-2012, 04:44 PM   #30
my little penguin
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hope things are improving today
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