my daughter was just diagnosed

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ljf01
New Member


Date Joined Feb 2008
Total Posts : 18
   Posted 2/29/2008 8:41 AM (GMT -6)   
Hi all,
 
I've been reading past posts and it's helped a lot. My daughter, who will be 9 tomorrow, was just recently diagnosed with ulcerative colitis after an 11 day hospital stay and 6 weeks of issues. She has been on pentasa and a liquid form of a steroid for 2 weeks, and while it's helping a little, it's not enough. She still goes 4-5 times a day with horrible cramping, blood, and piecy/stringy stool. The Dr. said his next choice as far as medication goes for her would be remicade. If anyone could shed some light on their experience with remicade and/or ulcerative colitis in children I would so appreciate it. As a side note, we are also thinking of getting and 2nd opinion with an infectious disease Dr. just to make sure the GI practice didn't miss anything as far as bacteria goes...even though they did a ton of testing as well.
 
Any answers would be appreciated!
 
Thanks!

JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 2/29/2008 9:12 AM (GMT -6)   
Hi ljf, my daughter just turned nine a few days ago and was dx with UC in August. My son also has UC and was dx at age 10. We have not done remicade...yet, but I can recommend an excellent resource for parents with IBD kids and many of them have done remicade. It is a great site to get information and support for all kinds of issues that we parents face including dealing with doctors, medicines, school issues and emotional issues for both parents and kids. I'm am so sorry about your daughter. A second opinion is always a great idea. Do you know if her doctor had the IBD 7 First Step Prometheus test done that helps determine if it is IBD (crohn's or UC)?

You can email me anytime if you'd like and do check out the link below.


http://www.dragonpack.com/ibdsupport/parents/
Julie

Mom of Son 16 UC dx 07/02, Sulfasalazine, Imuran, folic acid, L. Reuteri, Zyrtec, Iron, Vit/Min

Daughter 9 UC dx 08/07 Colazal, 6MP, Iron, Vit/Min., Culturelle


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 2/29/2008 11:24 AM (GMT -6)   

hi ljf01,

Unfortunately, I can't comment on Remicade with regards to children though I have had Remicade infusions myself in the past. Is your daughter taking a probiotic? If not, I would like to recommend using culterelle, which has helped many on this board regain formed stools.

ps.

If you don't mind me asking, has your daughter ever taken antibiotics?

Can you possibly create a signature with a list of meds, etc. that your daughter is on?

thx,

NBT

 

 


Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


ljf01
New Member


Date Joined Feb 2008
Total Posts : 18
   Posted 2/29/2008 3:20 PM (GMT -6)   
Julie - Thanks for that website. I'm sorry to hear about your children. How are they doing? My daughter did have that prometheus test and it came back negative. My understanding is that it is not 100% correct...do you know anything else about it? I do know it is a test for only "markers"  for the disease. Did your kids have it and if so were theirs positive or negative?
 
NBT - She is on an antibiotic now for something she picked up in the hospital. She just finished her last dose today. Otherwise, maybe she has been on them when she was younger but not much. I am looking into probiotics, etc. I now have my signature done.
 
Thanks!
Mom to Hailey....she was just diagnosed with ulcerative colitis mid Feb08
Currently on 500mg pentasa 3x/day and 16mg prednisolone (liquid-it says subsituted for orapred) 2x/day, working a little but not a lot


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 2/29/2008 3:23 PM (GMT -6)   
Just wanted to say hi! I was going to recommend the website someone already gave you. There are several other meds out there...has she tried Colazal, Asacol, any rectal meds? I hate she is having a hard time. Keep us posted.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 2/29/2008 4:05 PM (GMT -6)   
Mom to Hailey, When my daughter was on prednisone, they started her on 25mg (she weighs around 55-60 lbs.) - I'm not sure how that translates to prednisalone dosage.

For the Prometheus test my son took the old one 6 years ago and was negative for both UC and Crohn's, but his biopsies pointed to UC. Initially I thought maybe he didn't really have anything, but a flare every year since then has pretty much confirmed that he has something. My daughter had the newer test and hers said UC as did biopsies. My son is left sided and my daughters is pancolitis with the worst of her disease on the right side which is not really the norm (I pray it is not really crohn's!!).

Have you done any rectal meds? My son used proctofoam and canasa.

Right now both kids are doing great and have been in remission for the last 6 months. Before that my son had be flaring for 13 months.

I look forward to getting to know you better. Hope you little girl has a great birthday and is feeling better very soon!!!

p.s. my 9 year old wants to know if your daughter likes webkinz? Webkinz are what got us through the ordeal of the colonoscopy and stuff!!!
Julie

Mom of Son 16 UC dx 07/02, Sulfasalazine, Imuran, folic acid, L. Reuteri, Zyrtec, Iron, Vit/Min

Daughter 9 UC dx 08/07 Colazal, 6MP, Iron, Vit/Min., Culturelle


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 2/29/2008 6:43 PM (GMT -6)   
Just throwing it out there...have you considered an antifungal diet? UC symptoms can have a fungal etiology. I see your daughter has taken antibiotics in her life, which can certainly be culprits of health issues, like UC. An antifungal lifestyle change was the only thing that helped me get well again after 8 years of UC. I am very sorry to hear that your daughter is suffering. Ditto the probiotics suggestion, especially if she is on antibiotics now.

ljf01
New Member


Date Joined Feb 2008
Total Posts : 18
   Posted 2/29/2008 11:07 PM (GMT -6)   

Tabitha - Thanks for the welcome. The only medications Hailey has tried are the 2 in my signature.

Julie - Interesting about the prometheus testing. Tell your daughter Hailey loves Webkinz. She got quite a few while in the hospital and had a few before.

kim123 - Thanks for the antifungal suggestion...I will look into it.

We did make an appt with an infectious disease Dr. for this week just to confirm there is no bacteria, etc. causing this.........although there probabaly isn't. We were in Cancun in Nov so my husband can't get it out of his mind that it could be something she picked up there.....although the symptoms didn't start until mid Jan.

Thanks all!

Laura


Mom to Hailey....she was just diagnosed with ulcerative colitis mid Feb08
Currently on 500mg pentasa 3x/day and 16mg prednisolone (liquid-it says subsituted for orapred) 2x/day, working a little but not a lot


callisja
New Member


Date Joined Mar 2008
Total Posts : 1
   Posted 3/3/2008 9:03 AM (GMT -6)   
I have not been on remicade because, at least according to my rheumatologist and gi, remicade incorporates mouse proteins. Although there is no significant threat posed by them in the short term, long term use has not been sufficiently studied. Therefore, both of these doctors recommend using remicade only for older patients who (let's be honest) will not be on it for as long and, even if they are, it is preferable that they have a better quality of life than quantity. I was first diagnosed with ulcerative colitis and ankylosing spondylitis about 6 years ago at age 18 and both doctors felt that I was simply too young to go on remicade when it is certainly feasible that I'd be on it for another 60+ years. Therefore, they put me on humira (which treats both AS and UC). Although the humira did wonders on the UC, it didn't work on the AS, so I ended up going on enbrel instead, which doesn't do anything for UC (therefore I'm now on something else that doesn't work for the UC, but no insurance company would pay for both enbrel and humira).

The point of my saying all this is that your daughter is too young to deal with UC, especially when it affects school, playing with friends, athletic events, etc., but remicade has the potential down the road to have some nasty side effects. Humira, on the other hand, is manufactured using wholly human proteins and synthetics. For all the bad press that the pharmaceutical companies get, the fact remains that they're in the business of making money, and that means coming up with new medicines to treat chronic diseases like UC. As my doctor always says, I've gotten these at the best time in history since there is no doubt that those money grubbers will do their best to make a dime and at the same time cure the disease.
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