gonna tell the GI no...

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Regular Member

Date Joined Jun 2008
Total Posts : 237
   Posted 2/8/2009 12:01 PM (GMT -6)   
chris has flared 2x's in the last year while on the pentasa. once brought on by antibiotics, and most recently from an illness. on the pentasa his bm's range from formed to soft, and when flaring it's painful, bloody and explosive. he's on 20 mg of prednisone currently and that put him in remission within in 3 days. the GI wants to start him on Imuran but after researching it i'm really not interested in exposing my baby to it. we haven't really tried anything else besides the pentasa and  short-term prednisone. It just seems like a really big jump to me. i also would like to try some more natural stuff and would like to see an alergist and nutrition/dietician first to see if we can rule out some things that may be contributing factors. i've just never told a doctor no before and am worried about coming off as a know-it-all. anyone care to share their experience with me, or have any guidance?
Veronica (27), mommy to Chris (3.5 yr old, diagnosed november 2007 with left sided UC) and Emily 10 months
Chris current meds:
 Prevacid, Prednisone 20mg
 Pentasa 1000mg
 Culturelle 1x daily
 soon to start Imuran 25mg

Forum Moderator

Date Joined Apr 2004
Total Posts : 23551
   Posted 2/8/2009 12:32 PM (GMT -6)   
No need to feel as if you are a know it all to a doctor. Any good doctor that realizes that their patient or the patients mother, who can do their own research, will not mind if you give them an informed decision. Do not be afraid to tell the doc what you feel is best for your child. Imuran is a pretty potent medication and I don't know if I would have the guts to put my own children on it myself.
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers -Celebrex and Tylonel Arthritis
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Veteran Member

Date Joined Feb 2007
Total Posts : 788
   Posted 2/8/2009 2:34 PM (GMT -6)   
I agree with Red! I had a strange reaction to Imuran that put me in the hospital and they had a hard time even figuring out what caused it. If I were a baby, it would've been even harder.
If you feel hesitant to put Chris on it, then don't. There are other meds you can try first that he might respond to. And if you've only tried pentasa and pred., then you've only really just begun. I would definitely try diet changes too. I found that certain foods were big triggers for me. But I was able to control my symptoms better if I avoided them.
Trust your mommy instinct.
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/29/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."

Veteran Member

Date Joined Aug 2008
Total Posts : 5951
   Posted 2/8/2009 2:47 PM (GMT -6)   
     Can only speak for myself but my GI and I have hit some pretty rough spots over the last ten years.  He was so nasty to me in the hospital (he explained that he was frustrated) that I seriously considered dumping him for his associate.  It wasn't until I was discharged from the hospital and called his office requesting his associate see me that we were able to smooth things over.  Actually, his associate called me and said that my doctor was very hurt that I didn't request to see him.  I explained that I didn't like his attitude and refuse to put up with it if he ever shows that side of his personality to me again.  My GI kept insisting that I take Remicade.  I flat out refuse it because I was exposed to the TB virus years ago and know for a fact that Remicade can activate TB and it could kill me.  His associate even agreed with me and said Remicade is completely out of the question for my case.  I think my  GI took this personally and got very indignant.....well, tough toodles.  Bad enough he has me on 6MP which I fought tooth and nail against taking too, but I knew I had to take something because my system was becoming prednisone dependent.  Well, the 6MP does NOT keep me out of flares.  I lowered my dose too because on 75 mgm my white count went way too low...now I am taking 50 mgm one day and 25 the next.
     Sorry this was so wordy, but sometimes you just have to use you own judgment.  God bless.  I feel so bad for your baby.  I cannot imagine such a young tot having to endure this rotten illness.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.

potty girl
Veteran Member

Date Joined Dec 2006
Total Posts : 835
   Posted 2/8/2009 6:41 PM (GMT -6)   
Dont be afraid to tell your doctor what is on your mind. I have dumped a couple of them. but if you cant see eye to eye its time to get a new one. are at least a really good reason why he doesnt see it your way.

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,

Regular Member

Date Joined Dec 2008
Total Posts : 55
   Posted 2/8/2009 7:26 PM (GMT -6)   
My 13 year old was just diagnosed last June.  He also has limited UC (one time they refer to it as proctosigmoiditis, the next as left sided disease).  We started out on Asacol for at least 2 months.  It did nothing for the blood we were seeing.  Next, we switched to the generic for Colazal for a couple of months.  Nothing.  I asked about pushing up the dose of Colazal a bit (he was on 3/day, now on 5/day).  Then I started him on VSL#3 on my own.  I also switched over to the brand name Colazal.  And we got a prescription for Cortifoam.  Our peds GIs also mentioned immunosuppressants, but I asked about rectal meds, thus the Cortifoam prescription.  Right after we started the Cortifoam, we saw a drastic difference in the blood.  From blood with every BM to rarely even a speck anymore.  Now he is continuing with Cortifoam every second to third day, and he really does fine with it.  I think that our GIs are open to being a little less aggressive in treating because my son is feeling so well, and his only symptom is a little blood, which so far has not made him anemic.  I am hoping we can wean down the Colazal eventually, and I'm not sure how long they'll let him stick with the Cortifoam.  We'll also keep up with the VSL#3.  Not sure if you would consider rectal meds with your son, but since he has left sided disease, they may help...  Good luck and I hope you find some relief for your son soon.  It is so hard to have a child with an illness.  You just want to make it all better for them...

Veteran Member

Date Joined Nov 2006
Total Posts : 552
   Posted 2/8/2009 11:45 PM (GMT -6)   

You won't come off as know-it-all, you will come off as a concerned parent. The final decision what medicines your child takes is yours. We've been blessed with a great pediatric GI who worked with us. Each change in meds for bratcat was hard for us and she was already a teenager. I can't imagine what you have to deal with watching Chris be sick.

There are many possible alternatives to the heavy hitting drugs. Because UC is lifelong, we also thought about the long term effects.

You may want to look into the posts by haileys letter. Her daughter was very young and sick. She spent alot of time finding why she was so sick and it seems Hailey is now doing great.

You can always imagine all of us standing behind you when you talk to the doctor. Kind of like the cell phone company commercials.

--Mom of bratcat (17 years old) and nonamejames (20 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp

Veteran Member

Date Joined Sep 2003
Total Posts : 659
   Posted 2/9/2009 11:26 AM (GMT -6)   
You are the mom and if you feel a medication is not the right one at this time then you have every right to speak up. Also, get a second opition if possible from another child gastro doctor.
When I left my child gastro 15 yrs ago It took a few tries till I found the one I have now who is great.
Your baby will thank you some day for being so caring and loving and not letting a doctor jump the gun on
Good luck :-)
~~ Donna ~~
Diagnosed with UC in 1987 at age 16
Imuran ~ 2 1/2 pills a day,Pentasa 2x4 a day
Lexapro ~ 20 mgs daily for sanity  :-)

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