Treatment for child w/mild t- mod Crohn's

[liveinazoo]

I just told my doctor no to Humira. My daughter(10) was diagnosed on 1/13/08 with Crohn's. She was 44 lbs,anemic, vomiting, and diarrhea. She left the hospital after 10 days and now weighs 60 lbs and occasionally has a small stomach pain. She has been on generic 6MP for 5 months with dose increased to 75 mg without reaching a theraputic level. She was switched to name brand Purinethol in June and was at the theraputic level in 30 days! They tapered her pred from 20mg to 10 mg, 7mg to 5 mg during these past 6 months.

She was admitted to the hospital before labor day with 104.6 fever for two weeks. Given IV antibiotics and fever finally went away. Cultures all negative but her CT scan showed significant inflamation in her small intestineand illium.

So, now that her GI has seen the inflamation he feels that 6MP is not working and she should try Humira. She has regular stools her blood work is good, and only an occasional stomach pain. Since we left the hospital on 9/1 she is only taking 10 mg of prednisone and doing quite well. I want to try Pentasa before jumping to Humira. Does anyone else have any questions or things I should tell my doctor to support this decision? He is trying to maintain her growth and prevent a flare prior to her growth plates closing. She had been undiagnosed for two years and did not grow or thrive during that time.

Thanks for any suggestions and help.

 

[amor151]

i can understand you wanting to get her off prednisone, im 15 and am worried about the affects it has on my growth as well, but pentasa is not a very powerful drug. it sounds like your daughter is doing alright though so pentasa could be enough to keep her in remission so it is definately worth trying before humira in my opinion. ive been on a large dose of pentasa for well over a year and have honestly not felt much of a difference because of it but apparently it can be quite useful in dealing with mild crohn's disease. 10mg is not a large dose and if she is not feeling alot of pain or other symptoms on that amount i would be led to believe she would feel around about the same when she comes off them completely and pentasa could be a good way of maintaining her health.

im not an expert but from personal research and experience thats what i think, hope it helps

 

[Mazen]

I think you should try Pentasa first as it's a milder drug.

You may also try the SCD diet, if your daughter is willing to accept it. Here are some links:

http://www.breakingtheviciouscycle.info/
http://www.amazon.com/Breaking-Vici...d_bbs_1?ie=UTF8&s=books&qid=1221550421&sr=8-1
http://www.pecanbread.com/

 

[saidinstouch]

To be 100% honest, if 6MP wasn't effective you are just prolonging the inevitable if you try pentasa before Humira/Remicade. Essentially in the standard stepwise progression that has been used in the past pentasa is a stop used much earlier than 6MP. I know the concerns for Humira are drastic, but 6MP can be just as bad. In fact that 106 degree fever could very easily have been caused by extreme 6MP toxicity as that is one of the main symptoms associated with 6MP related toxicity. Obviously 6MP isn't as associated with lymphoma, however it is fairly immunosuppresive in its own right so that concern should be alleviated hopefully.

As you said you want to keep her off prednisone while she grows and that is truly your best bet. If she is 10 she will be starting to grow rapidly and will need all the bone density she can get (if she isn't on calcium supplements get her on one IMMEDIATELY with the guidance of your doctor for the amount to take and be sure it is calcium citrate NOT calcium carbonate as it is more readily absorbed). If your doctor thinks Humira is the next step I would listen and give it a try. It is good to be concerned, but sometimes you have to just take that leap of faith and hope that it works to get her healthy again. The biologics were a lifesaver for me and I really hope if you go that way for her that they can provide her the relief she needs.

The other option is to try dietary modification with the SCD diet along with pentasa, however that can take time to take effect. If she is in a near remission state then you can probably give the diet a chance to work, especially since she is young enough that dietary modification is still an easier option for her. If she flares again though it is time for you to get more aggressive and give Humira a try. The shots/pens aren't overly painful in the grand scheme of things, they just take a few tries to get used to and ultimately become a minor inconvenience with the icing of injection site + warming of pen to room temperature being the most painful part of the process . From my experience the pens inject MUCH faster and cause less overall pain and discomfort as I've had both types of injections.

I'm sorry she is going through this, especially at her age. Luckily there are some amazing drugs out there that might help her with what she needs. I wish I had better advice than go straight to Humira, but I honestly think that is a good way to go if she flares again before the SCD diet can do something for her. I would make sure she is off the 6MP and talk to your doctor about the toxicity problems. If they didn't mention that to you then get yourself a new GI doctor IMMEDIATELY. A doctor who doesn't tell you about that side effect (and one who might not have gotten the metabolism bloodtest that is available to determine the therapeutic dose of 6MP) is not a doctor I would keep. That level of fever is borderline brain damaging and quite possibly could have been prevented at the first signs of flu-like symptoms with a little knowledge. Hopefully some of this rather long prednisone insomnia induced post will help you out some and I wish you and your daughter all the best.