Irishgal1, did I see a post where you mentioned you could recommend a doctor in NY. We are in NJ so NY is certainly an option for us. Thanks Brian...
Thanks Poppysocks. I think the very near future will be a interesting time for break-thrus in immune disease treatment. We have personally seen in only a few years how main stream medicine is...
http://www.ccfa.org/research/participate-in-research/find-studies-and-clinical-trials/red-hill/RHB-104.html Thanks Brian...
Wanted to share info I found out about a study on FMT for children up to 21 with UC. We have searched the country and could only find FMT for C-Diff (which my daughter also suffers from). This study...
I would be also interested in the long term followup. Thanks...
We travel to Mexico once a year (Club Med Cancun) with my now 18 year old daughter who has UC/Crohns. We have had no issues. We never drink the water, only bottled, brush our teeth with bottled...
good luck...
On another note, make sure you signup for the Humira discount card. It helps cover your deductable. I think it covers up to $ 2000.00 on the inital dosing and 900 a year up to 9000. I could have my...
Nurse mom and dad. We give it to her. An ice pack on the arm for 15 minutes first....
My daughter has been on it since Dec. she just turned 18. She has failed everything else including Remicade. Humira has been a wonder drug for us. Never know for how long but we will take a day at a...
Here's another vote for Cleveland Clinic. My daughter has been there a few times and avoided surgery in the 11th hour. See Dr. Remsi. He's the guy....
My daughter is 17 and has suffered for 3 years. She has similar indeterminate UC. She has not had success with most standard drugs. Currently on Humira and imuran with success. But we have been on...
Wishing you the best. It has been 3 years of hell for my daughter and the rest of us. She has been as sick as anyone could be with this disease and has managed to bounce back, always avoiding surgery...
Very happy with Dr. Oliva-Hemker at John Hopkins. My daughter is 17. We have been around the country seeing the best. Cleveland Clinic, NYU, Mount Sinai. Good luck...
To those that have done it and have found success, How long did that success last? Asking for my 17 year old daughter, we are trying to find her facility that will perform FMT under medical guidance....
By the way, in the three years that my daughter has had UC, nothing has hit her like the Cdiff flare she just went thru. In the bathroom every hour on the hour for days, pure water. Dropped from 113...
My daughter is 17 and has been fighting Cdiff. We have been everywhere for her. The last place we went was John Hopkins we went there because they are doing FMT for kids with Cdiff. Only catch is you...
Just returned from our meeting with the doctors on FT. Here is the latest on one of the few top hospitals doing FT for children. They have done two. They are only doing for CDiff, which we knew. That...
Katmom, Whole different ball game when it's your kid vs. yourself. Our daughters both have the same concerns about the self image and the effects of the surgery on their new relationships and who...
Thanks all for your words and thoughts. Just praying we can keep her well enough to get her to Hopkins on Friday....
We met with a surgeon two years ago when they said we had to take it out. She is well aware of what the surgery entails. She is freaked out by the bag (she would have the 3 stage J-pouch). I have no...
Ksl905- did you have the surgery and if it was your daughter instead of you would you want her to have it? Thanks Brian...
I thank you all for your input and think it is important that other's chime in, isn't that why we are here. In the last 3 years we (my family) has learned alot about the illness as well as the...
Thanks for all your words. As far as GI's are concerned, we have been to our hospital (Morristown NJ, NYU, Mount Sinai, Cleveland Clinic). They all say the same thing. The only thing I find...
Thanks. Right now not eating much as she no sooner puts it in her mouth and she is in he bathroom....
She is 17 and has had UC for 3 years. We tried everything and nothing has worked. She also has Lyme and just recently CDiff. Doctors here are recommending surgery. We have been this close once...
Having trouble finding a place that does FT for kids. So far struck out at Columbia Pres. although they did say they will see if there is anything they can do since she is 17 1/2. Same at Cleveland...
Pluot, Thanks. Will call tomorrow morning...
Herbgarden Our daughter who is 17 is currently battling a case of Cdiff as well as a bad UC flare. Our GI is actually discussing FT's with us, but they do not do them at his hospital or anywhere...
Yes it's not fecal smelling at all. Its also not sulfurish. Thanks...
Trying to figure out the connection if there is one to the change in BM odor and change in health. My 17yr old daughter who has suffered for 3 years today had a strange odor in the bathroom. We have...
As the dad of a 17 year old girl who has suffered terribly over three years. My heart goes out to you. We did Remicade and moved on as it stopped working. We never stop holding out hope that the next...
My daughter, 16 at the time would have scary Roid Rage. But it passed. Hang tough...
JD good luck with the Uceris. Follow-up, the insurance company reversed their denial and have the covered the second prescription for the Uceris. I knew that would happen....
Gary, thanks for your response. We are appealing. Been down this route before. The appeal process is a pain and takes time. We were denied an expedited appeal. Interesting the denial came back with...
Our insurance company covered it for 4 weeks and denied the second 4 weeks for our 17 year old daughter....
I find it interesting that the head of pediatric gastro at a well known hospital would not have heard of this company nor it's research. I brought it up to him last week....
The treatment plan is new. starting very slowly and trying to build up her strength and overall health before she starts trying to kill off things. She is very depleted in all areas. My wife is the...
Rearmiracles, I have seen some of your other posts and was hopeful that treating the Lyme and co-infections would resolve the UC. Sorry it didn't work for you. Would you say it had any effect on your...
mycoplasma, babesia, epstein bar virus, h-pylori,...
My daughter has had UC for three years. We have been around the country to the best and with little results. She has been on Cipro for over a year prescribed by the Cleveland Clinic as well as...
constantinprayer My daughter is 17 and a junior so we understand your challenge and your will. We will add you to our nightly thought list and will wish you good health. My daughters symptoms are the...
Update on daughter and Uceris. Things not going great. Approx week 6-7. Went really well at first. Took her out of a major flare. Then about 2 weeks ago she started on the downward road. Watery...
What a difference a few days can make. Started daughter on her Lyme treatment which is Doxycyclone. Not doing well. Blood and mucus increase. Afraid that the Uceris may not hold. We were worried that...
Quick followup. 17 yr. old daughter on Uceris 2 weeks and all is good so far. Out of the really bad flare. So far no side effects that we can tell. There have been a few moments of what we questioned...
Just wanted to chime in on Uceris results. My daughter who is 17 has been in a flare. Bathroom run every 1.5 to 2 hours, little blood and either watery or loose stool. Started Uceris about 7 days now...