Hi, I'm new here. My daughter was diagnosed with crohn's 4 months ago. The past 4 months has been the worst months of my life. She is 13 years old and she's on 6MP. She was also on Prednisone for 2 months but it made her eye pressure to go up so we had to stop it. She has nausea and lot of burping. The burping makes her vomit sometimes. Does anyone has the same symptoms. Is this because of crohn's or 6MP. I'm so glad I found this forum. Now I know I'm not alone.
My Daughter
- Thread starter tarlon
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Hi Tarlon,
First welcome. You've found the best community on the internet =) It sounds like the symptoms are probably Crohns related. Although I would bring it up with her doctor. I assume she is getting the regular blood tests that are needed to make sure the 6MP isn't causing any problems. It could also be reflux disease which I think is pretty common. You might try some Prilosec or similar to see if it helps the burping issue.
If she is vomiting quit a bit then I suggest asking her doc for Phenegren or something like it to help control it. I tend to be nauseas quit a bit and have orders in to let me get it whenever I need it.
First welcome. You've found the best community on the internet =) It sounds like the symptoms are probably Crohns related. Although I would bring it up with her doctor. I assume she is getting the regular blood tests that are needed to make sure the 6MP isn't causing any problems. It could also be reflux disease which I think is pretty common. You might try some Prilosec or similar to see if it helps the burping issue.
If she is vomiting quit a bit then I suggest asking her doc for Phenegren or something like it to help control it. I tend to be nauseas quit a bit and have orders in to let me get it whenever I need it.
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Hello Tarlon~ Sorry to hear about your daughter and the crohns 
.. My symptoms started when I was 12. It's good that they have a diagnosis and you know what your dealing with. I have crohns in my esophagus, stomach and somtimes flares in my mouth as well. I have to stay on meds similar to the meds that Drew metioned or I have burping, bad taste along with some pain and raspy voice. I have found that the soulutabs work well for me because they coat the area quickly. Having the nausea medications on hand helps me too. Hope you find some good information on here and friendly support from others dealing with the disease. Take care~
.. My symptoms started when I was 12. It's good that they have a diagnosis and you know what your dealing with. I have crohns in my esophagus, stomach and somtimes flares in my mouth as well. I have to stay on meds similar to the meds that Drew metioned or I have burping, bad taste along with some pain and raspy voice. I have found that the soulutabs work well for me because they coat the area quickly. Having the nausea medications on hand helps me too. Hope you find some good information on here and friendly support from others dealing with the disease. Take care~Thank you so much for your response. Yes we did do blood test every week for 4 weeks and then every 2 weeks after that. I just had a call from her Dr. to give me her blood results. She asked me to stop the 6mp because it doesn't seem to be working. She thinks that she should go on Remicade asap. I was so against the Remicade from the beginning and my daugther is terrified of it. Is anyone here on Remicade? Can you share your experience with me. Thank you so much.
My Butt Hurts
Squeals-a-lot!
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If you use the search option, you will find TONS written here about Remicade.tarlon said:
Here is a good thread called "Remicade Club".
http://www.crohnsforum.com/showthread.php?t=4544
For the most part, it seems that most of us have either done really well on Remicade, or done well at first and then it quit working. One of us (kromom) had a very serious reaction that could have/could have not been from the Remicade.
I am doing SO well on it, btu I am also on Imuran and Pantasa. Who knows which is working, or if they all are, btu I was "going" 10 - 15 times a day before I started Humira (which quiut) and then Remicade. I feel 95% normal!
I think I just read today though that Remicade and Humira shouldn't be used for pre-adolescents because the cancer risk is higher. Don't quote me on that though, check for yourself. NO idea where I read that.
Welcome to the forum by the way - you've found an amazing place to help you get some suggestion for your daughter.
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I'm on Remicade, it threw me directly into remission the first time around. Its really not a huge worry... I believe my new doctor explained that I have a 1 in 75,000 chance of developing the T-cell lymphoma that is most talked about with the Remicade, and that is only if I am on Imuran at the same time (taking my age and gender into consideration). He said all of the cases of T-cell lymphomas were found in young adolescent males taking a combo therapy of Imuran and Remicade. Remicade is a really great drug when it works the way its supposed to.
The infusions are rather uneventful usually, take about 3 hours and its not painful or anything. I would really consider it at least... maybe others on here can shed light as well.
Welcome to the forum!
The infusions are rather uneventful usually, take about 3 hours and its not painful or anything. I would really consider it at least... maybe others on here can shed light as well.
Welcome to the forum!
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hey tarlon, i was young with crohns as well, i was dx when i was 9.
like your daughter, they put me on the 6mp which didnt really work and so they started remicade soon after that. it gave me a pretty good couple of years! it was the best i have ever felt crohnswise. like katiesue said, it is definitly worth considering.
no one deserves to feel sick all the time, maybe itll help her to feel great!
good luck to both of you
welcome
like your daughter, they put me on the 6mp which didnt really work and so they started remicade soon after that. it gave me a pretty good couple of years! it was the best i have ever felt crohnswise. like katiesue said, it is definitly worth considering.
no one deserves to feel sick all the time, maybe itll help her to feel great!
good luck to both of you
welcome
Thank you Kello. I'm just trying to digest the idea of her having to go trough the infusions. She is so scared of hospital and Ivy. I think I have to come to terms with the idea and control my emotions and then try to work on her. All I've done today is been crying. I'm so glad I found this forum and everyone has been so nice and helpful. Thank you so much.
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aw hun, feel free to come on here and vent and cry with us ok?
we are famous for our cyber shoulders
yes the iv is scary, esp to the younger patients...but in comparison to the tummyaches and constant nausea and vomiting, one tiny prick isnt so bad right?
maybe it would help her to see it from that perspective?
i came to really enjoy my remi infusions! when i was younger it was a nice special day with my mom or dad...i got off school early or didnt go, got to watch tv or take a nap during the drip, have a lunch out...it was fun to do all that stuff instead of a school day!
then when i was a bit older and stressed out and bogged down with school and activities, infusion day was a wonderful break from the hustle. 3 hours of sleepy time for me!
maybe some special positives would give her something to look forward to with the infusions. the greatest positive of ALL is no more stomachaches of course.
also, the people in childrens hospy's are SO nice. the ladies in the clinic i went to for infusions were sweet and caring and really helped with the whole fear aspect and before i knew it, it was old hat. also clowns came by...and honestly im a clown hater so i always pretended to be asleep lol, but im sure it cheered up other kids!
we are famous for our cyber shoulders
yes the iv is scary, esp to the younger patients...but in comparison to the tummyaches and constant nausea and vomiting, one tiny prick isnt so bad right?
maybe it would help her to see it from that perspective?
i came to really enjoy my remi infusions! when i was younger it was a nice special day with my mom or dad...i got off school early or didnt go, got to watch tv or take a nap during the drip, have a lunch out...it was fun to do all that stuff instead of a school day!
then when i was a bit older and stressed out and bogged down with school and activities, infusion day was a wonderful break from the hustle. 3 hours of sleepy time for me!
maybe some special positives would give her something to look forward to with the infusions. the greatest positive of ALL is no more stomachaches of course.
also, the people in childrens hospy's are SO nice. the ladies in the clinic i went to for infusions were sweet and caring and really helped with the whole fear aspect and before i knew it, it was old hat. also clowns came by...and honestly im a clown hater so i always pretended to be asleep lol, but im sure it cheered up other kids!
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Tarlon I was on Remicade also but did not do as well as the others have seem to do or done. My blood work was all over the place then I had antiphalaxis reaction during an infusion. It was very serious but they were able to turn it around and I did not have any lasting effects from it that I know of now. If you and your daughter are worried about the infusion process itself you shouldn't. I mean if your thinking the IV and all of that would be really painful and grueling it's not. The staff at most of the places they do infusions are really great as a whole. (from my own expierences) I would try as hard as it must be to be as strong as you can in front of your daughter. She is young and is looking to see how you respond and what you think. If you do your research and way the pros and cons and think this is what is going to be best for her then she will trust you. I had to go through a lot of very painful procedures when I was her age and my mom held my hand all the way. I remeber my dad going with me when my mom was out of town once...I saw him turn greenish and have to be taken to another room and that made me scared about something that I had had done many times before that. Kello has been through remicade at a much younger age than myself and she would know if it was worth it for her at a young age. If she is soo sick and in pain I think I would do whatever I had available to make it better for her. I have had a lot of IV meds and hydration over the years and I now have a power port for all of that stuff. It helps save the vains I still have and it makes IV treatments almost pain free. I don't even know if that is something they do for children with crohns or not?? Kello might know that ....I got mine as an adult not a child but I wish I would have done it sooner. I am so sorry that you have such painful decisions to make for your little gir! I have three girls myself and I can't imagine how tough it must be for you..I hope you can find the strength you need for yourself and your daughter Try not to let this confusing and frusterating disease get the best of you.. Keep us posted and vent if you need to vent so you can put on a BIG SMILE for your little one
Try not to let this confusing and frusterating disease get the best of you.. Keep us posted and vent if you need to vent so you can put on a BIG SMILE for your little one
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Kello you must have been responding to her post at almost the same time as me..lol.. You have such a great outlook on everything! If I were in Tarlon's situation those are just things I would want to hear from someone who has been through this as a young girl.. Like I said I have three girls and you just want to know your making the right decisions... Your an awesome resource for parents and you women!
Thank you so much for taking the time responding to me. People here are great. What a support group. I just have to get it together. You know it's very hard when you raise your child the best way you know how and you're always careful of what they eat and what they do and all of a sudden you have to give them all this meds with all these horrible side effects. My daughter was never really sick. She was mostly constipated and occasional stomach ache the past 2 years. I took her to an specialist 2 years ago and she said it was IBS. She was perfectly OK until the Feb. of 2009 she got the stomach virus and the diarrhea didn't go away for a month and I notice that she was losing weight and she had no energy. After so many tests the doctor told me she is anemic. That was when I panicked and I took her to my own Gastro.specialist and asked him to do Endoscopy and Colonoscopy. From then on she went on different meds. and the last one was 6MP and Prednisone that the doctor told me to stop because it's not working for her. We had to stop Prednisone last week because her eye pressure was going up. We have to see her doctor on Monday and I know Remicade is our only option now. She has a friend online whose already on Remi and that's a big help. I am sure she can put her mind at ease a little bit. I've heard that if you were on Prednisone and you need to go on Remi you would have to wait a few weeks before you can do that is this true. Again thank you so much every one with your kind words. I will keep you posted.
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tarlon said:
Tarlon - If you mean do you need to be off prednisone for a while before beginning Remicade, I know many of us on this forum were/are on both at the same time, so I'd say the answer to that would be no, but your daughter's doctor would have the final say on that.
Welcome to the forum. I'm so sorry your daughter has Crohn's and that you both have to deal with this, but you have a lot of caring people here who want to help in whatever way we can!
