• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

The Worried Mum's/Dad's/Carer's Club!

Glad to hear that things are well. OH, I feel for her. I have migraines from the same type meds. I don't take any of them for that reason. I am glad that you got it all straightened out!
 

DustyKat

Super Moderator
Bumping! See? I stand by my threats Dutch. :lol:

Now you all can see how quickly I react (worry) at the slightest provocation! :biggrin:

Dusty.
 

DustyKat

Super Moderator
Then welcome to the club Julie! :wink:

You can check in anytime you like but you can never leave! :voodoo: :lol:

Dusty. :heart:
 
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
 
Great idea. I will soon have lots of extra cash. My son (dx at 15) is now off to college and doing well. Remicade has been amazing for him. He has made it through most of Freshman year asymptomatic. He is great about his diet and the almond flour cookies that he bakes are a big hit in the dorm. He even asked to take the yogurt maker back to school last time he was home. Of course no family's struggle with Crohn's has a happy ending. My 12 year old daughter has been having suspicious symptoms. She also has frequent migraines, often with abdominal complaints. Just yesterday she complained of cramps while running, the same complaint that led to her brother's diagnosis. No stool complaints for now. It won't take much more for me to bring her to GI for eval. I hate to worry her, but I don't want to delay diagnosis if that is the problem. At least she can look at her brother's life and see that it can be close to "normal", whatever that is. Remicade scares me to death, but it has made a huge difference. I don't relish the thought of possibly having two kids on it. I do yoga daily to help balance the highs and lows. I would give anything to have to deal with this for myself instead of for kids, but that is not the hand I was dealt. My son and I talked about some of the positive changes in our lives with his diagnosis when he was having to write college application essays and that was helpful to both of us. This forum is great for hearing someone's good story or relating to their bad story. I have a little bit of both to share for now.
 

Jmrogers4

Moderator
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
Great idea, I don't know if I have enough money to put in it though. It would probably consume my entire paycheck.

You can't even have normal worries because it all ties into Crohn's even the normal worries circle back to is this going to have an effect on his disease.
 
So true that everything circles back to how will this affect IBD?

Currently concerened b/c fecal calprotectin is still high (mid 300's), and hemoglobin is low (11.3). GI doc prescribed vit D and iron (yuck). Day after seeing GI doc he got a fever of 106(!!!) and was diagnosed with pneumonia. Now, on amoxicillian, so I haven't added in the iron and vitamin D so I feel guilty about that, and I worry that the antibiotics will mess with him.
 

Jmrogers4

Moderator
That is so rough Henrietta, seems like a lot of kids are dealing with pneumonia this year. Hope he gets to feeling better soon.
 

my little penguin

Moderator
Staff member
Add me to the club...:tongue:

Currently having
Migraines again, stomach aches, nausea fatigue etc....:voodoo:
Remicade was working but now what ...:eek2:
I have a kid in tears upstairs now .:ybatty:
:(
 
MLP, I'm soooooo sorry to hear this.
Whens his next appointment? When were labs done?
I'm sorry I might have missed all this.

HUGS
 
Replying to the post as I need to belong to worried parents group. I am so constantly worrying...I am worrying (you see...) that when I start writing why bothers me, I would never stop...Today just one - worrying about both of my kids as we are probably moving to another country, so many unknowns, so many things to take of, so many good-buys, so many people to cheer up instead them cheering us up...oh my...

Ania
 
sorry to hear about the pneumonia. this won't help immediately, but have you read about Manuka honey? My son takes it daily and so far he hasn't seemed to catch any more colds or have any worse colds than his classmates. He caught the flu last April when about half of his high school had it and missed fewer days than his friends. it was recommended to me by a friend whose 2 sons have Crohn's also. It may not be doing anything, but you certainly couldn't talk my son into stopping it to find out. hope this helps.
 
Sorry MLP that he is not feeling well. Hugs!!!

Worry Queen here too! When things bad..."oh no!"...when things are good..."what's coming?"
 
Location
Niagara,
I am an amazing worrier too! And Crohns drives me nuts 'cause every little thing that happens could be a possible complication...

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'.
But instead, we are always guessing and worrying, afraid that each little symptom is a problem.

I wish I knew when I was over reacting and could 'chill' (as my son says!).
 

Tesscorm

Moderator
Staff member
MLP - just catching up here, I hope things are better today! :hug:

Another worrier here... :redface:
 
henrietta 78- he takes a tablespoon each morning. he likes to spread it on some spelt flour bread and then sprinkle some ground flax seed on top. I take it also and like to mix the tablespoon in a serving of plain yogurt. it has a really smooth taste so it is easy to also have straight off the spoon. I get it from amazon, but it is also at whole foods.
 

Jmrogers4

Moderator
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'.
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.

MLP - Hope DS is feeling better today
 
Hi, I am new today to this forum, hope I am starting in the right place. I have a 12 year old son with Colitis and Crohn's. His troubles are mainly very low colon, lot's of inflammation right now. We are trying Prednisone for the first time - day 3 and then we are to try Methotrexate. He has been on Apriso, but it hasn't seemed to do much over the past year. I have also requested the doctor to give him enemas. He doesn't get a lot of tummy pain, just some bleeding. I am excited to be on here!
 

Tesscorm

Moderator
Staff member
Welcome to the forum! :D

I hope the pred works for him!! You'll find lots of great parents here with tons of experience and knowledge to share, and always ready to offer their support. :ghug:

Feel free to ask questions about the meds; there are quite a few kids here who have used both pred and methotrexate.

Have a look through all the subforums - lots of info in the various sections.

I'm sure there will be lots of other parents along to welcome you... :)
 

Jmrogers4

Moderator
Welcome Dawn
My son was on methotrexate for a few months - worked fantastic for controlling his crohn's symptoms unfortunately he had a reaction to it and could no longer take it. Jack also took Apriso along with Imuran. I agree with you we did not see much of a difference with the Apriso and it was expensive.
 
Hi and welcome,
My girl is on pred and EEN. I'm glad you were able to find us (sorry for your son) and welcome aboard.
 
Thanks to you all! I don't understand why the doc wants to keep him on the Apriso, if he said it has done anything?? He had some slight inflammation up higher and a little gurd, but that is all healed. He may think the Apriso healed that, but I think diet and supplements are more likely since the lower got so much worse. Many have said the lowest part of the colon is hardest to heal and you have to use enemas.:duh:
 

Crohn's Mom

Moderator
Hi Dawn and welcome ! :hug:

My daughter tried Apriso as well, and it didn't help her a bit either.

Feel free to start your own thread here and tell your story so we can all get to know you better !!
Hope to "see" you around more :)
 
worried again.
B seemed to be doing pretty well, but now she hasnt really pooed in 4-5 days so we started Miralax. Nothing too much yet. bloated. she is irritable, find her in bed under covers, but always says she is fine. I will give her a better laxative tomorrow if nothing happens... it is always hard on her body, but needs to happen.

It is always something. I feel like the poor girl has not had one normal week since she was diagnosed last year in January.
I am so hopeful starting Kefir next week will help her.
Have any of you had luck with milk kefir?
thanks for letting me vent.
 
Last edited:

Jmrogers4

Moderator
Poor B :( Hope the miralax goes to work. I always get the "fine" as well even though you know that it is not really
 

CarolinAlaska

Holding It Together
Yeah, we have to dig here to get a report. I keep a record of symptoms so every night I go through the "how many poops did you have today? what was it like? did you have any abdominal pain? did you take your vitamin D?" etc. My husband will comment in conversation about how well she's doing, and I'll be like, "no, I don't think she's in remission, she's still having abdominal pain, but it is good that her poops are formed now..." We go to the doctor's for her weight checks and we try to describe to her how Jaedyn's doing and we argue. Tim downplays her symptoms, but I think it is because he doesn't ask. It used to be that she had a lot worse pain, but daily pain is daily pain, isn't it? I'm just preparing myself that when we see the GI next week at 5 weeks into EEN she's going to say we need to do prednisone because she hasn't gotten well fast enough... But maybe in one more week she'll be pain free. After all we've only been on the NG tube and the peptide formula for the past 10 days now, so maybe by 2 weeks it will be a different story... Okay, I'm rambling, but maybe someone can recognize my worried pattern of thought and make some sense out of it
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hope, I've never heard of milk kefir? What is it?

Carol, If the GI wanted pred to begin with, you know she'll use continued pain to push it after 5 weeks. We've never done EN so I don't know what the expectation is there. I understand your reluctance to start pred, I hope she gets better soon!!
 
My son is on his 4th day of Prednisone 60mg, (he weighs 75lbs) he looks like he is addicted to an illegal drug. I am so worried, supposed to do this for 2 wks! Why can't they lower the dose and use a steroid enema too???
 
Dawn,
I am so sorry about your daughter. There is a good chance the Prednisone will stop all of his symptoms for a while. It is also common for the GI to start other long term meds that will take longer to take effect at this time too.

If the symptoms return when tapering off of the Prednisone, then the enema/foam or cream could be started then.

thinking of you both

Carol, It sounds like she is doing really well on the tube feedings. You are right that the pain does mean there is probably some inflammation still. the GI might add in an antibiotic, put probably not Prednisone. Maybe by then the pain will be gone.

Keep us the great work mom and Jaedyn is such a trooper!! glad she is feeling better.
 

CarolinAlaska

Holding It Together
Thanks Dex and Julie for the encouragement. :) Overall I'm in a much better place emotionally than I was when we started the EEN and got the Crohn's diagnosis.
 
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
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Welcome Liz! I think you should seek a new GI. Sammy has too low a quality of life to spend another day without a solid treatment plan! Good luck!
 

CarolinAlaska

Holding It Together
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
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!

Let me know if there is any way we can be of encouragement to you and your son.:hug:
 

my little penguin

Moderator
Staff member
Hugs ....
I agree you need a Gi and you need a good plan for your son
Before the damage gets too bad that it can't be fixed.
Treatment should not be optional thing .
It is great to have your child's by in on things
But for a while longer they are still a child whose is getting sicker by the day.
I really hope a new Gi or second opinion can get your child to that good place.
 
Hey Liz,

I also live in the DC Metropolitan area (Southern Maryland) and my son was diagnosed with Crohn's in April 2010 shortly after turning 13. Sorry to hear about Sammy - Crohn's sucks.

We have had a ton of good fortune with our doctors, so I thought I would share to see if you were being seen by the folks at Children's Hospital? There are 2 doctors that we have seen from the get go - Dr. Wolfe and Dr. Sehgal (both females). They have offices in a variety of places (pretty much any where there is a Children's Hospital Out Patient Center (Annapolis, Upper Marlboro, Laurel, Montgomery County).

When Alex first became ill we spent a few days shy of 6 weeks in Children's Hospital. After that he was on 1500 mgs of Pentasa per day, but continued to have some inflammation issues and they raised his pentasa to 3500 mgs per day - (knock on wood) since then he's been good. We just had an appointment a week ago and everything is normal except his Vitamin D - so we are back on supplements.

Alex is on Home and Hospital through our County (you mentioned Sammy being home now - is the County coming into school him?). I have found it to be the BEST medicine. Zero stress = healthier, happier child. We tried staying in school, but missing 1 to 3 days per week made his grades suffer and stressed him out. So by the middle of 8th grade I pulled him and our pediatrician is great about keeping him home (as long as he's involved with other activities). He's now a sophomore and it's been a blessing! As a County Homeschooled child he can still participate in school activities (if he so desires), attends awards ceremonies, has played ice hockey for his HS team and will graduate with a HS diploma (which if I had pulled him to teach him myself, Maryland Law - Homeschoolers do not get HS diplomas unless they attend Maryland schools).

Trying to think if there is anything else that might help... Keep posting questions and venting - the Forum is GREAT for both :) And you and Sammy will be in my thoughts and prayers.

God bless..
Shell
 
Thank you Shell, Champs Mom,my little penguin,Carolin, &Dexky,
I know you are right about the doctor. I appreciate your input. I had a different doctor at Childrens Hospital and got waylaid with some other specialists (oncology, for bone tumors, and immunodeficiency, and infectious diseases dept. they passed us around so much and never offered anything conclusive since he had varying symptoms in so many areas. ( 2005-2007)When I tried to switch GI docs to one that would be near us (they had recently opened the Laurel office) They wouldn't let me switch. Been to Childrens hospital gargantuan mega center too many times and it now gives him such angst. I am headed to check out Johns Hopkins Med center in Balt. and Fredreick. Have some good leads on excellent PEds there. so hope to be setting up appointment today. My fear is that he has had such bad experience with the other drugs and the ones that are left seem to have potential for such bad side effects. At a seminar from Hopkins I went to last weekend a woman stood up to ask how often they see side effects with Humira. Her daughter was in the hospital for her neurological reaction which triggered a rare syndrome and she was now having to be treated for that which was worse than the Crohns has risk of death and is also now a lifelong issue. the speakers poo pood her a bit and said only a small percent of people have extreme reactions and that for many people it is a life changer and worth the small risk.
I am in a bad place because, at this point , given my sons history of being in the 1% and having bad reactions to just about every drug he has tried,( for other things tooantibiotisc, shots etc) it is hard for me to (yet again) take the "partyLine" of oh this one is different this one works for most people" and risk that we would be in a situation (like his woman who spoke) of then being in a situation of treating lifelong neurological damage in addition to Crohns. As a parent, how could I ever face him if I told him i thought we should try Humira or Imuran and he ended up worse off?
A bit worried that when I go to the doctor I will somehow get pressured into these drugs. My son would rather try the fecal transplant, ( not sure anyone does this for kids yet though, and certainly no one does it around here for anyone) and i am going to look into seeing if there are any Dr Shrader physicians in our area to do the LDA therapy which I read about on this site. I may opt to traveling with him for that treatment if it seems worthwhile. Anyone have any experience with this? Or other ideas. I know I do have to do something fast. He is not getting any better really on the Pentasa.
Will keep you all posted. getting used to this site. So will figure out where the best place is to follow up with where we are. I so much appreciate your input and support.
 
Hi, my son is 12 and we currently go to UMMC in Baltimore, but have an appt with Dr Laurie Conklin in Montgomery Co. which is also apart of Children's hospital in DC. He was on Apriso 1500mg a day and got much worse, so now ummc wants to start mtx. They never suggested increasing the Apriso(mesalamines). Maybe they didn't try increasing the dosage, because it didn't help at all, only got much worse?
 
Last edited:
@ Dawn: We met Dr. Conklin while inpatient at Children's she was great with us - but not our regular GI.

@ Liz: I too was (am) opposed to Humira and other like drugs because of the "possible" side effects. My son was seen in oncology for 6 months due to inflammed lymph-nodes in his abdomin and my Dad had CLL (chronic lymphocyte leukemia) and it was just too much of a possibility for me. However, I know there are folks on this site where Humira (mp3) was a life changing (positive) drug. Though my son's doctor *really* wanted us to try it - I opposed and she didn't argue. It was moreso a "Okay - we'll keep going, BUT IF what we are doing doesn't stablize him, then I need to consider other options, including tube feeding." It was helpful that he bought into his recovery (he wanted to get back on the ice). Has Sammy met any other kids with Crohn's? Someone he can talk to about what he is going through? I think that is a huge help. Alex also goes to therapy weekly... just a thought (takes a wee bit of pressure off of you also if he has someone else to talk to about what he's going through and have them help him through the emotions...)

Shell
 
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 :).
 
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 :).
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.

And, to the rest of you....I FOUND YOU! LOL I didn't know about support groups til I noticed Carol has it listed under her avatar.
 
Sorry for making you cry marni's mom! My heart goes out to you and your daughter - 4 is so very young to be diagnosed! I hope she starts to feel better soon, you iron ladies will be in my thoughts!
 
Hey everyone, :sign0144:

Okay, so here's my worry:

Hubby's been diagnosed with Crohn's since 2008, when he was 18-19 years old. It's progressed to being a rather severe case of Crohn's today at 22 years old. I know that, generally speaking, IBD doesn't get easily diagnosed until the later teen years, but I'm really concerned about our son. He's only 1 1/2, but I'm so worried that he's gonna get his daddy's IBD. When I was pregnant with him, someone told me that IBDs are more readily passed down through the mother, and so (since I don't have an IBD) my kid would, more likely than not, be okay. I don't know if this person was just saying that to ease my worries though....

So, here's the question: When was your child diagnosed with IBD? Were there early warning signs? Does your child have a family history of IBD? Which side(s) of the family do they get it from?
 
Feed him very healthy and organic! Lots if veggies and low grains and lots of low sugar Greek yogurt! Low sugar always!
 
Good thing he does love his veggies!! That, and I did breastfeed him until he was 11 months old. I've heard that breastfed children are less likely to become immuno-compromised. I hope so!
 
When was your child diagnosed with IBD? Age 13

Were there early warning signs? Not really. He had situation when he went running for the bathroom at age 11 and didn't make it (explosive). Nothing had happened before or after that gave us an indication there was an issue.

Does your child have a family history of IBD? None.

Some other info (I'm curious to read from others if you'll add it to your answers:

My son:

37 weeks gestational, natural birth - low birth weight 5'10", LOW water in delivery, and SHORT cord (only about 12 inches!). Anyone else similar?
 
When was your child diagnosed with IBD? Symptoms began at age 9 dx at 10
Were there early warning signs? Only a little blood in bm's
Does your child have a family history of IBD? None on either side
Which side(s) of the family do they get it from?
Normal term and delivery - did get extra fluid in his tummy, but was pumped

Had a lot of antibiotics as a baby for ear infections and then again at age 8 and 9 for strep throat!
 

Jmrogers4

Moderator
When was your child diagnosed with IBD? Symptoms began at age 9 dx at 10
Were there early warning signs? awful constipation as a baby, don't know if this was early warning or not, just prior to dx, fatigue, weight loss, lack of growth, anemia, constipation for a couple of days, then diarrhea
Does your child have a family history of IBD? Dad has Crohn's
Which side(s) of the family do they get it from? - Not sure my side is lactose intolerant, dad is adopted so don't know of any family members besides him.
Normal term and delivery - 9.3 lbs, born on his due date. He was induced. He was so big (and I was so tiny at the time) he was sitting on a nerve in my leg and it would cause my leg to go numb and I would topple over - not very safe
 
Seems a total crapshoot, rehopeh ... sorry, pun intended.... There is a genetic component - susceptibility - but there is also some environmental aspects and triggers. I think my son's Crohns was triggered from a strep infection. He was on antibiotics nearly constantly as a baby for ear infections and tonsilitis. I would use antibiotics sparingly, knowing your child's genetic history. And maybe be more strict about a healthy diet, we weren't. We had no one in the family, found out an adult first cousin of my husband was diagnosed just about a year before my son was. Also, stay on track with yearly pediatrician checkups to more closely monitor height/weight gain stays on the growth curve.

When was your child diagnosed with IBD? officially age 8, Sep 2010.
Were there early warning signs? No, but slow growth was missed, normal bathroom habits, non-healing abscess near bottom with surgery revealing fistula, led to GI and bloodwork and endoscopy/colonoscopy and dx.
Does your child have a family history of IBD? Which side(s) of the family do they get it from? No, but apparently husband's side.
Alex was full-term, week-late, C-section
 
Last edited:
Thanks everyone, for all of your responses. I think you're right, Jenn: it does seem like a complete crapshoot (lol). Husband has Crohn's, in-laws have lactose intolerance. He was induced 3 days early, since both sides of our family has a history of birthing big babies, and he was no exception: 9lbs 10oz at birth. Normal, healthy pregnancy, no complications. So far, we've only had occasion to use antibiotics once in his 1 1/2 years, for an ear infection he got. But, we've tried to keep him on a healthy diet, sticking to organic as much as possible with our budget, and limiting the amounts of junk food and sweets he has. We did have issues with him not gaining weight appropriately when he was about 6 months old, but he caught up quick once he turned 1. He's now back to being my "Chubba Bubba", weighing about 35lbs at 1 1/2 years old :)

So far, he seems pretty healthy and happy to me. Some seasonal allergies, but other than that not much to really worry about. I just wanted to have some idea of what to watch out for, if anything, in the future.
 
Liam undiagnosed (seems like only time will tell if he has IBD but as it seems possible I'm trying to modify diet in ways that might help).

Full term breastfed <6 weeks -- he couldn't tolerate breast milk, flowed straight through him (12+ dirty nappies per day & not able to gain weight appropriately)

Family history: Crohn's on my side family. UC on my husbands.
Healthy between 1 & 10 but his weight starting dropping away from the percentile line it was tracking aged 6. Now 10, no weight gain to speak of this year, despite growing 8 cm, plus has had symptoms on and off all year (severe stomach ache/ acid reflux / mouth ulcers).

Personally I'd keep a close eye on how your son is tracking against his growth chart lines as from what I've read here it seems that not growing as normal rate seems to be an early indicator for many kids.
 
Welcome to the forum and I am glad you have such great questions.

I highly recommend probiotics. With yogurt, kefir milk or tablets. This will always keep his good bacteria strong. Do lots of research on this however, because even some of the good bacteria can take over too much and his body size would only need a small amount. It is a strong theory that "bad" bacteria play a huge role in IBD and many other diseases.

Daughter diagnosed: age 13
First symptoms: Age 12
Was constipated as a baby, hardly ever used antibiotics.
Family History: cousin diagnosed with exact type of Crohns (Crohns colitis 20 years ago at her age) Her dad and I have no stomach issues. Some acid reflux runs on other side of family.

You probably already know not to ever give him ibuprofen, aspirin, aleve, or anyother anti inflammatory.

Keep his immune system strong.

I have read that the percentage of a child getting it with only one parent having IBD is VERY slim.

This is a great site for you and your husband to find info and support for his IBD.
Take care and best to your family.
 
Hi rehopeh,
Oh I love chubba bubba babies. Grace has so chunky, I could just eat her up, my son as beautiful as he was...was always and still is a bean pole. Grace at four weighs 40lbs and that took quite a journey to get her to gain that.
My Grace had constipation/belly pains/ reflux/joint pains/eye pains/rash since she was very young.
Hugs I hope your boy never faces this and I hope your hubby gets feeling better soon. You both look so darn cute in your avatar. I like seeing happy couples! HUGS
 
Welcome Liz. I am sorry your son is having such a hard time and I agree with Dexky, you might look for another GI. Your son's past sounds very familiar. I have a 15 yr old with Crohn's. Pre-dx he had ear infections, sinus, allergy, bronchitis, asthma, pneumonia,....always something! Tons of antibiotics as an infant and toddler. At 3 years old, his old school pediatrician told me that something was "weird" about his immune system, but he couldn't put a finger on it. He also said it would show up later in life... In hindsight, boy was I an idiot for not taking that seriously! Ryan has also gone up in height and down on the weight chart in the process.

It is so hard to watch our kids suffer with something, especially when it interferes with them having the life we envisioned for them. But it sounds like he has a great Mom and some friends that are really sticking by him in this.

I hope that things are looking better soon. HUGS!!
 
Hi all. I just joined today and was reading everyone's stories about helping their children though this. My A was diagnosed in Sept 2012 at age of 10. Thankfully the doctors got it right the first time and didnt have to spend days on end in tests. We go to Riley Hospital here in Indy and have one of the top GI doctors in the states. She is also Lactose intollarent so that adds some issues when figuring out what she could eat at first. She started out on the Prednisone for 3 months and got added the 6MP at 50 MGs then started Remicade in November just before Thanksgiving. After the initial infusions she was to go every 8 weeks, but after the fifth week started to get symptoms again so they adjusted us to every 6 weeks for the Remicade. Now they have adjusted her 6MP from 50mgs to 75mgs per day. It seems that the medicines are not staying in her system like they want but the drugs are working. She still has some of the Prednisone weight on her and finding ways to get that off with the increased meds is challenging since her metabolism has increased so has her appetite. Any suggestions on how to help with that i am open to. She does eat healthy but our schedules just dont make for a normal workout routine with her.
 
Hi! I am new to this. I am frustrated because my 14 year old has been having left upper abdominal pain on and off. She also has sensitivity to smell...especially to a child with strong body odor. She says she starts to gag when she has to sit near her. Does anyone else have sensitivity to smells and upper left abdominal pain? I always hear of
 
Hi rehopeh
My Lucy is 3 and was only recent diagnoised
With crohns.
She had early signs of tummy pain, diarrhea, weight loss
From a early age.
Lucy only weighs 11kg
I hope your hubby feels better.
 
Hi Penny. My A does gag when she smells something new. This started with her symptoms. She just trys to get away from it asap but sometimes that doesnt happen and she spits up. We try to make sure that we enter a mall at a main entrance instead of a store entrance where the perfumes set her off. If she cant get away from the person try to see if she can carry something small that she likes the smell of, my daughter likes ground coffee, and have her sniff it to help.
 
Thanks! I really hadn't thought of carrying around something that smells to cover it up. I will let tell her to try to use gum or get something else like lotion or some perfume to use.
 

CarolinAlaska

Holding It Together
When was your child diagnosed with IBD? 1-13 (age 13)
Were there early warning signs? Failure to thrive as a toddler after a bad case of Rotavirus, never recovered. Diarrhea most of her childhood, that was controled with a gluten-free diet for the most part (not Celiac)
Does your child have a family history of IBD? None on either side, but my side of family has a problem with gluten tolerance and other GI issues.
Which side(s) of the family do they get it from? N/A
Normal term and delivery.
Had several rounds of antibiotics as a baby for sinus infection (ended up being a foreign body lodged in her sinuses that she finally sneezed out!) and in preteen years had ongoing sore throats with swollen glands...
 
Jennifer was actually diagnosed at age 7 but I know she had it for several years. Really she had symptoms at age 3. When she was at preschool she would have diarrhea and have bowel movements 4 times a day. The doctors always said she must lick her lips. When she was born her face was real red with dry patches (ezema). It wasn't until they started 6 MP that it finally cleared up just like the doctor said it would. She had tried allergy shots at age 5 or 6 but she seemed to get worse. Our pediatrician said he always trust a mom's intuition so we stopped them and she did get better. Delivery was normal. My sister has ulcerative colitis but the genetic mutation which is also found to have bowel issues is from my husband. Jennifer had numerous ear infections as a child and had been on numerous antibiotics with ear tubes placed.

Sorry have to pick up a daughter. will catch you later.
 
My 9 year old has only been diagnosed for a little over a month. We have been doing weekly shots of methotrexate and prednisone pills daily. It worked for 2 weeks, now he is losing weight again and his joint pain is back. The Dr. wants to discuss Remicade...any advice on questions I should be asking the Dr? Or advice on how to deal with this new treatment?
 
Kristy5959 - 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.
 
Kristy5959 - 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.
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 better :(
 
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.
 
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.
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.
 
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?
 

my little penguin

Moderator
Staff member
Most 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.
 
My son will have his second remicade infusion this week. He was diagnosed and had surgery in October 2012. Our GI recommended remicade as the best chance to stay in remission after surgery. We had to battle insurance though, because it is typically only approved for use w/ fistulizing Crohn's or when other meds do not help. It can't hurt to start the conversation about using it and get the ball rolling as far as insurance. It took us 5 months to get approval.

Have heard from others that remicade has made a huge difference for them.

Best wishes!
 
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?
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.
 
Most 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.
Thank you, this gave me some good insight and some things to ask the Dr. tomorrow :)
 

CarolinAlaska

Holding It Together
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.
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.
 
Hello Im knew to all this support group stuff but Im not sure who else to ask this question. I have a 12 yr old son who has been dealing with Crohns for about a yr now and Im glad to say that he is doing very well. He has always wanted to join the military, he talks about it all the time and in the past few days I have found out that he cant. Im hoping theres a parent out there that has some advice on how and when to brake this news to him. Should I tell him now or do I wait? I know hes going to crushed. Thank you to anyone that can help!
 
Welcome Camsmom that must be really difficult.

I'm not a huge fan of delaying bad news however if I was in your shoes I think I'd want to go into the discussion armed with lots of ideas (and material for him to read and look at) about alternatives careers to help try to emphasis that there are still lots of great options available to him.

If your school has a careers councillor perhaps they could help you come up with options that fit his interests and apptitudes.
 
Last edited:

Artisan105

Yondaime
The Remicade process usually takes 3-5 hours depending on the dose and how fast it is given. They will give him some Benedryal and Tylenol before the infusion. This will make him sleepy so make sure he is comfortable. If you notice any reactions like rashes, coughing, or restless leg or hands, make sure to inform the nurse about it. They will make a note of it to give to the doctor. Oh, after the infusion, the day of and the day after, he is not going to feel good. He is going to be bed ridden for a day or so. He is not trying to be lazy. He just feels like poo.

Remember, Remicade is an auto-immune suppressant drug. This means infection from anything is high! Like pink-eye from someone at the hospital or at school. A cold or flu. Just make sure he washes his hands properly. Keep him away from other children or sick people until a day or so. Give his body time to recover.

There is a lot of positive benefits from Remicade. If it doesn't help your son, ask your doctor for Humira. It is similar to Remicade but created out of human hemoglobin. But talk to the doctor about the negatives about Remicade also. Remicade is actually classified as a cancer treatment type of drug but it benefits Crohn's patients as well. There have been some instances of people developing cancer from it. Others get severe rashes. It all depends on the person.

I tried every medicine out there for Crohn's. 6-mp, Metho, Imuran( Made me stop breathing!), now I am on Remicade. I been on it for 3 years now and it has worked wonders for me. My doctor is keeping Humira as a last resort trump card, so most doctors won't just use Humira first until they have tried other meds first.

Just remember everyone is different. Not all medicine works for everyone. Keep a journal of your son's medicine- his reactions to them- good or bad.

Oh what is really important is the meals you give your child. Make sure to go to the diet forum and read all the foods that help people/ harm people. Make a journal on what works for your son. Most processed foods are a no no. High acidic fruits like OJ is a no no. Raw vegetables typically are not good for us: Boil them or cook them. Milk is not good for us. Gluten is not good for us. No fast food. No take out food. No soda. etc.

Ask your doctor if he can do a vitamin test. It shows what your body is lacking. Don't give your son just solid vitamin pills. Get the gel cap liquid ones. Get soft iron pills. Get flaxseed oil gel-caps. All of these things will help him out tons. Try to use sugar alternatives- like honey or agave. Normal sugar is not good for us nor does it absorb properly.

I hope all of this helps you out. Praying for you.
 
My daughter just received her 8th dose of Remicade, which was doubled the last two doses. she has NOW had one month of no symptoms. :)

I do believe the Remicade or whatever each parent/person decides to use to get this disease under control is an important step, for moderate to severe IBD. Nothing else was working for our daughter, and we even have to do the Cortifoam each night still. But now all is GREAT!!!

Each person is different as to how they respond to Remicade. They will monitor your son very closely each treatment. They will give him an antihistimine before the treatment starts and take his vitals every 15 minutes to make sure all is well. Our daughter never had a reaction and the treatments have always gone very well.

As with any medication like this, you are doing it because it is what he needs right now to stop this disease. With some people/kids they respond within the first-4th treatment, but we really didnt see a whole lot of change until recently.

We were very nervous about starting this medication,

1. Because of the possibility of not being able to fight off infections. However, she has never been sick with a virus since we started her on it.

2. Because once you start, you dont want to stop unless you have a reaction. Once you stop taking it, you can build up antibodies against it.

3. Long term possible effects: cancer. This one still bothers me. But the percentage of people who get cancer is very small.

4. Scar tissue. Remicade can cause scar tissue where there is a lot of inflammation which often leads to surgery down the road.

None of these have happened to our daughter and she is doing great like I said.
But like you, we had to make a decision on how to get her diesease under control quickly and long term use of Prednisone is not an option.

(you had mentioned earlier about your son being angry/aggressive, it is a side effect of Prednisone.)

I wish your son the very best and hope this is what helps to get his Crohns under control.

I hope I didnt say too much, but I know your head is spinning trying to take in all the information. You are doing so well and your son is so blessed to have you helping to make him better.
 
I'm a worried mom. Worried I'm going to make the wrong decision and possibly not decide soon enough.

Lukas had his small bowel resection three months ago now. Prior MRE showed no Crohn's any where else except the stricture and his surgeon said he didn't see anything either during surgery. Since surgery Lukas has only been on Pentasa, which his GI says doesn't do much.

I've read the studies and know he should probably be on 6MP or, better yet post-surgery, Remicade. We are waiting until his June appt simply because I want to wait until school is out to work through any side effects. His TPMT test was in the intermediate range and I just have a gut feeling that 6MP isn't going to work for him. Absolutely no basis for that other than my gut! Completely rational, right? Ha!

As of right now, he's doing great and his last labs in February were the best they've ever been. His GI said if he continues to do great clinically and endoscopically we could just do nothing... but after everything he's been through, that really scares me. His GI is also very open to both 6MP or Remicade as well, but quite honestly, I'm not sure he knows which direction to go either. It's like we're waiting for something (presumably bad) to happen to point us in a direction.

So... I'm worried because I have no idea what to do re: maintenance meds. I know I need more info (labs, scopes) before I can truly make an educated guess on what to do next. Maybe that's my problem? When he was sick, I got used to labs being run every couple of weeks so I knew where we stood. Now? No clue.

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.
 
Mehita,

I am glad everything went so well with your sons surgery.
It is good to enjoy life now..... maybe he will not need medication. At least smile and breath for a week or two and forget about Crohns. As a mother, I know that is not possible... but you both deserve a break.

You are doing everything you can and he is blessed to have you.
 

CarolinAlaska

Holding It Together
Breathe and enjoy your son,yes. But I'd also be giving 6MP a try. I didn't push for it, but now Jae is not feeling as good as she might be in a couple more months... It has had absolutely no side effects. I would encourage you to get it started. If you wait and your son does start developing symptoms, your option to do the 6MP will be forfeit as it takes to long to start working. Anyway, it's easy for me to say now that I finally made the plunge and got it started... wasn't easy to take that step though.
 

my little penguin

Moderator
Staff member
Yeah that ^^^^
Out of all things 6-mp is pretty mild and can keep thins at bay for most.
You wouldn't want to lose what you gained by surgery /removal.
Plus if he shows signs again then you will need at a minimum pred to keep things under control AGAIN until 6-mp starts to work ( 3-6 months)
Is there a reason for waiting???
DS had no real side effects . Just elevated ast alt numbers which the docs took care of but nothing he could "feel" that would stop him from doing anything.
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
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.
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.
 
Hmmm...okay, thanks guys. If I call the GI and say we want to start 6MP, can someone tell me how this would play out? Would we need to go in for base labs before starting or would the Feb labs be good enough? Then labs weekly for a bit?

The reason we were waiting until June is 1) he is doing well right now (aside from a head cold) and 2) we're trying to avoid missing more school and tennis practice w/appts and labs. He gets pretty stressed when he misses school no matter how much I or his teachers tell him otherwise.

Would they start him on 6MP with this cold/virus going on? He sounds horrible but says he feels ok. Two BM's that were between 6 and 7 on the stool chart, presumably from the virus.

Maybe I waited too long already...?
 

my little penguin

Moderator
Staff member
We took 6-mp through plenty of colds. Only fever was an issue.
Your tmpt level should be good from feb. just ask your Gi for their thouhhts
It really shouldn't add any new infections.
As for DS he caught the same number of colds etc ...
And he was in 2nd grade so exposure to yucky kid germs was high.
 
Top