Just stop taking the meds?

What dose of prednisone is she on? I am so sorry she's feeling so bad. Have you considered Remicade? I know the only real cure is surgery but it's such a big step and we all hope that it doesn't come to that. I am in the same boat, on 6mp, pred, Asacol, rectal meds... I've tried diet and probiotics as well without much luck. Have you tried dietary restrictions or probiotics? Have you had her stool tested for bacteria? Have you tried any courses of antibiotics? Are you using any kind of rectal meds?

Hi BIGDOG-

 

I am so sorry about your daughter! I also have a 10yr old daughter with UC for the past year and I know what

you are going through-

 

You do need to get help NOW from you Pedi GI Dr. Do you like and tryst them? If not, can you find another DR ASAP?

 

Is she on a high enough dose of Prednisone to get the falre calmed down? I always had my dd take it 2 times a day.

Have you increased her VSL? I would try that also?

 

Also, Cortenemas really help alot- can you get them and do it 2 times a day for a week or so and see if it help?

when my dd was really bad I would give her Immodium first so she could hold in the enemas over night.

 

Maybe a different Mesalamine- pentasa? Colazal? Sulfasalazine?

 

I think you need to get in tough with your Dr and see what they suggest...they have to treat her- this is not right

 

Please keep us posted- I am praying for you both

Big dog, I've just read some of your older posts (I have a little girl with UC too ). Looks like you have tried everything, Remicade included, and that she's been struggling with this for years. If you've tried diets etc I would give flagyl a try if you haven't. If not, I would start to think about the possibility of surgery. In a child I think weight loss/stunting of growth can have serious physical and emotional/psychological consequences. I know how hard it is, we are struggling with this too. Keep us updated.

Thanks, all. I guess I did fail to mention that she had Remicade 3 times. She ended up with a septic hip (air flight, hip surgery) and on another occasion she had major allergic reaction. However, the very first time she took Remicade she felt better so quickly, the next day. However, we are not comfy as parents to go down that road again, with two hairy, scary epiodes

She's been on Imuran and Purinethol, too, but became hepatoxic. She was really sick. This "generic" 6mp she's been on now for 6 weeks, since the 1st of Oct. She's begun to throw up, lose appetite, etc..

She takes prednisone twice a day. 10 mg in the a.m. and 6 mg in the p.m.

We've taken her out of Montana, down to Cedars Sinai (not recently). They pulled her off all meds at that time for 10 days then added Imuran, which was awful, as I mentioned above.

The Mayo Clinic in Rochester agreed with our decision to take her to Cedars Sinai but now I'm thinking we ought to give Mayo a shot at this.

As far as diet goes, she eats bland foods. She has no allergies, thankfully. she drinks lactose free milk to help with easier digestion. We've not tried rectal meds. she does take probiotics, both VSL#3 and another one. She takes immune system boosters, fish oil, and a multi vit. Amazingly enough, the girl is healthy other than this stupid, ridiculous disease.

Sorry to say that I don't know much about UC in regard to children; however, it sounds like her UC condition is serious. Is she predisposed to UC? In other words, is there any other relative who has this disease? If so, is it possible for her to get surgery? It really sounds awful to be so young and not be able to lead a normal life due to this disease. The sooner she gets surgery, the sooner she will be able to get her life back to normal. If she is not predisposed to UC, then I would look into every alternative treatment first before resorting to surgery.

maybe some of the mom's who did choose surgery will come on and give advice, or shaz, her parents had her colon removed when she was 10, she is very happy with the decision.
It sounds like your GI has tried lots of the stuff there is. My concern with a small child would be the long term effects of the meds, and the though that she would be on them for the rest of her life.
When my son was about 2 or 3, he started having blood and mucus in his poo and i freaked, i told my husband, if this is UC his colon is coming out. we won't do drugs, we won't do diets, its coming out. I wasn't going to let him go through what i went through, when i knew how much better life was post surgery.

i hope she gets some help soon, and im so sorry to hear she is going through that

Okay, I'm back. I just read all your replies. Took her to her Pedi GI on Tuesday. She recommended hospitalization again. We came home and are headed back tomorrow to spend the weekend in hospital. While there and on i.v. steroids, they plan to try Remicade again. I don't know what "rejection" is but I do know that she had a severe reaction (septic joint) and the next time she took it she had a severe allergic reaction. Since she'll be in the hospital anyway, they plan to administer it to her again, very slowly. I was unaware that reactions are common with Remicade. It sounds dumb, but I feel better knowing that now! After Remicade, our option is Humira and surgery. I took her off immune system boosters.

She's now on: Lialda, Entocort, Prednisone

I pulled her off the 6mp and she is a lot better. She isn't nauseous and has an appetite, even though she won't each much.

Hi Big Dog -
You'll be in my thoughts this weekend! I hope she finds some relief from the steroids, and I hope the Remi goes smoothly. Keep us posted....

If you are looking for a "safe" experiment, that is, not a prescription drug with side effects, but instead whole, natural foods, I may try the SCD or antifungal diet with natural antifungals, especially if she has been on antibiotics before. What are the "bland" foods she eats now?

Well, I am not a child and not sure about UC in a child however I had 2 severe reactions while on Remicade and after getting Benadryl and steroids by IV before each infusion I continued on it no problem for several years. I started on Remicade when I was 21. I had once reaction where I couldn't breath and one where I had severe joint pain a couple days after. My joints were so bad I couldn't wash my own hair or put on my bra, I could not move without severe pain. After those 2 incidences I never had Remicade again without being premedicated and starting slow and I never had another problem.

Also, not sure if they do this for kids or not, but I also had a flare so severe once they put me on bowel rest and put me on TPN for a month. It is nutrition by IV. THey put in a permanent IV line so no food goes through the digestive track, the first few days I was in the hospital, then they sent me home with a pump and the TPN was delivered to my house. I could have clear liquids and the rest of my vitamins, fat, and calories all came from the IV.

I hope this next stay in the hospital goes well and she gets well soon. So sorry such a young one is dealing with this.