:ylol2: good to hear all is well for now.
Great idea, I don't know if I have enough money to put in it though. It would probably consume my entire paycheck.I started putting money in a special jar whenever the Crohn's worries kicked in. I have a never ending pot of money for Legos, wine and chocolate
Or like those stick on thermomentor that go from green to red. Put one on the belly - green is good Red - hospital No more guessing/2nd guessing yourself.You know, it would be so much easier if Crohns just showed up as a crazy third arm that grew out of the belly and then we could look for it and say 'oh, there's that Crohns acting up again' or, when we didn't see it, we could say 'oh look, no Crohns going on here, things are fine, I can relax'.
Hi Liz. Thanks for your post. I'm so glad Jae's blog was helpful and encouraging to you. It is a rollercoaster life, and I find blogging about it helps me keep it all straight. I think right now Jaedyn is at the best place she's been in years. She's off her seizure meds without seizures, she is tolerating her new med without side effects (6 MP, only three doses so far), no diarrhea, no abdominal pain, cheerful, doing her schoolwork. Of course I realize that her good times are usually cyclic, and don't last more than a week or two, but I'm hoping those cycles will get longer and longer until even her bad days are short and not much. She is still having some joint pain with activity and isn't gaining as much weight as I'd hoped (yet gaining!)... I do talk with her about what we want to do, because I need this to be something she wants. Last fall she decided that she was sick of being sick and was willing to do whatever it takes to get better. That led to a bunch of testing, a Crohn's diagnosis and now 7.5 weeks of complete enteric nutrition, but she is feeling better! I'm hoping we're on our way out of this cave of darkness and disease!Thank you for sharing your story here. I am new to the forum as of tonight. My son is 13 and was diagnosed in February 2012. His background is somewhat similar to your daughter's, with the exception that he continued to grow taller while his BMI dropped from 75th percentile to 1%. He had always been sick, and was on antibiotics constantly for years. We knew the GI was also an issue, but there was always something acute that seemed more important that needed to be addressed. (chronic debilitating sinus infections, adnoidectomy, tonsilectomy, sweat tests, Seizure tests, apearance suddenly of "benign" bone tumors, school issues, ADHD. ) Months of living on ensure to gain weight ( before diagnosis)
Your daughter is very wise and brave to be able to discuss with you what her options are. I also sense you are an exptremely good avocate/parent for your child. My doctors in a major metropolitan area with all the resources available to them, have not moved half as fast as yours or offered nearly as many sensible options over the past year. It is very difficult to get them to return phone calls to discuss treatment.
It took us 6 months to get my son weaned off of Budesonide, (he was only on it fofr about 6 weekks initially but he had absolutely horrible side effects for him) this experience has left him extremely wary of making any changes to his regimin of Pentasa ( 1000mg 2x/day)and risling any other new drugs.
He is worse off now than he was a year ago. Tires very easily, has so much diffculty concentrating it is difficult to get him to do any school work. He is also at home, and is in bed 90% of the time. Counting a year in second grade he has likely missed almost 4 years of school at this point. It has been a tough winter for us. He wants to do so the Specific Carbohydrate Diet and argues over going to the doctor. Having a preteen with crohns os no picnic.
I am extremely grateful that he has such a resilient personality, tht his friends still coem over to play with him and are exited when he can last 5 minutes longer than he did last time when they play quick football scrimages in the back yard. Well just wanted to introduce myself. I am liz. my journey with sammy is not how I would have chosen it. the challenges are not ones I would wish for any child or parent. I am grateful to have found this group as I sort out what our next move is to help give him the strength he needs to be able heal so that he can get out and play wiht his friends and leave his room , and concentrate on school. Thanks for your strength and your story of pumpkin. I love that she colored the ENN tube bandage. That just says so much about her. She will bring so much strength from this forward in her life. I pray things will get easier for her and your family soon. WIth you in spirit as I navigate this last bit of winter. ~liz
ACC, thank you. Your post made me cry. If you ask the others here who know me, they'll know why. I'm a raw nerve right now because my daughter, who is 10, is in a MAJOR flare. The biggest one in the six years since she was dxed. It IS hard to watch our kids suffer, and painful. And, if we cuold, we'd take that pain away and endure it ourselves. There's nothing worse than having your child look to you for help or relief, and not be able to give it.Hi everyone! I am not a mom yet, but I was a pediatric Crohn's patient (dx 2001, age 11). I'm 22 now. I just wanted to pop over and say that you guys are champions. Because I don't have children, I can't imagine what it must be like to worry so much about your child, but after my most recent hospitalization it really hit me how much my mom has done for me and how hard she works to take care of me when I'm sick. She is my rock and I would not manage my illness nearly half as well if I hadn't had her unwavering support. As much as we kids might not have gotten super lucky with our health, we certainly did with our parents. I gave mine quite a bit of grief when I was young and sick (still a pisser even when malnourished!), hopefully your tots are better behaved, but I just wanted to say that you're all amazing and strong and wonderful parents .
He has been on it for 5 weeks. He started his Prednisone taper and when we were on 5mg every other day is when the symptoms came back. So we went back up to 10 mg every day. Been doing that for a week and it is not getting any betterKristy5959 - How long is your son been on MTX? I know it takes a few weeks to building up in his system. My son is on his 3rd week and not helping yet, at all. He is also tapering Prednisone.
Good to know. I am sure the Dr. will give us a few options...I just know Remicade will be one of them. Just trying to know what are the right questions to ask before starting something new.So sorry Kristy, I totally understand. My son is down to 30mg, was down to 25, having alot of bleeding (he started at 60mg this time). We are starting Vancomycin tonight, which worked last year beautifully - it's for gi bacteria. He can take it for 3 weeks, giving the mtx time to kick in.
We have done a tone of diet changes. But nothing seems to make any difference. Just this morning I tried to get him to drink Almond breeze milk and the smell of it made him throw up. He had already taken his meds...blah! The part I am worried about is that he is have blood in his stool about 6 times a day. He is losing weight and he can't go to school because he spends so much time in the bathroom. He is miserable all of the time. A 9 year old shouldn't act like this I am just hoping we can find him (and me some relief.I would ask if that is long enough for the mtx to fully do it's job, maybe give it a few more weeks? Have you tried any diet changes? My son wasn't as bad as he is now, before the Prednisone. Like why use something that is impossible to get off of?
Thank you, this gave me some good insight and some things to ask the Dr. tomorrowMost kids become steroid dependent - typically the younger the child at dx ( anything less than 15 is very young btw) the more severe the disease course.
IBD can also be very aggressive so you may have mild symptoms that you can "see" even though damage has been going on for a long time on the inside. Hence the suddenly doing worse.
As far as MTX. It can take from 6-12 weeks to become effective.
DS tried it last summer. Every time we tried to wean down the pred things got worse. WE also increased the dose - this didn't help.
He ended up starting remicade at the end of August.
Once started not problems weaning pred and I got my kid back.
Remicade does take time to work as well. but most see improvement after the third loading dose if not before.
It is given by IV. Your child will need a TB test. It does need to be done at an nfusion clinic.
DS had his at the children's hospital where his gi is located with lots of other kids.
He actually enjoyed his time there - movies, games tons of food and nurses getting him warm blankets.
SOme docs pretreat with antihistamine and steroids some only antihistamines.
There have been some studies that show staying on MTX and Remicade decrease the risk of building anitbodies to remicade. But sometimes the meds still stop working anyways without antibodies or the child reacts anyways.
DS had two minor reactions to remicade late int he game (infusion 6 and 7) .
So given that pre treating with steroids did not stop him from having a reaction the decision was made to stop the remicade and try humira.
Hypersensitivty can happen but it is rare. Once it does happen if steroids do not prevent it then the odds of it getting worse each time are good.
I will say remicade was the best thing that happened to DS - it is like he is not sick anymore most day.
You are right. A 9 year old shouldn't have to go through this. I'm sorry you and he do have to go through this. We totally understand. Don't worry, you and your doctor will find a solution.We have done a tone of diet changes. But nothing seems to make any difference. Just this morning I tried to get him to drink Almond breeze milk and the smell of it made him throw up. He had already taken his meds...blah! The part I am worried about is that he is have blood in his stool about 6 times a day. He is losing weight and he can't go to school because he spends so much time in the bathroom. He is miserable all of the time. A 9 year old shouldn't act like this I am just hoping we can find him (and me some relief.
I think you're reading it! Well, not right this second but the rest of the forum I'm sure you've seen Dusty's kids' success stories post-op with Imuran. Sarah is 7ish years now in remission and Matt is going on two. My son was on 6mp for over a year w/o side effects. If it will work for him, I'd go for the 6mp. Just a pill a day as opposed to visits to the hospital for the remi infusions.Isn't there a Crohn's manual or something??? I so wish there was! I'm also bummed that we're not enjoying and appreciating remission right now because of the big ? in front of us.