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Hi-  My 11 year old son is newly diagnosed with Crohns Colitis.  Is there anyone out there who has a child near my sons age that is already on Imuran?  Can you tell me about your experience? The side effects are frightening.  

The Dr's are pressuring us to start him on it because he is not growing.  I'm too frightened and am getting a second opinion in 2 weeks.

 Reply posted for Leica.

My son is 11 and has been on Imuran for the past year, it made him tired at first but that passed within a short time it seemed that everytime he went for labs his dose was increased and was not working on the inflamation as well as it should have just got back from Dr's appt. yesterday and once again labs came back as showing inflamation and Imuran not at theraputic levels talked about increasing his dosage again which would put him at the same dosage as his father also a CD sufferer which just did not seem right to me as his father weighs 240 lbs and Jack only 67lbs, he also has not gained any weight since last April and weighs only 67lbs although he has grown an inch his first in 2 years!

Dr has decided to switch him to Methotrexate, which I did not know anything about and have spent the day looking up information on it if anyone has experience with it I would appreciate any info.

I think my son would tell you the one thing that has helped him the most was going to Camp Oasis last summer.  Just meeting kids his age going through the same things that he is at school, with friends, etc has really helped and he has kept in contact with those friends and have formed their on support group even though they all live at the closest 6 hours from each other.  It was definitely worth the 9 hour drive to take him to camp and see the once again happy child come out with some new coping strategies at best and knowing he is not alone at worst.

Hang in there, I think everyday is a learning experience for all of us parents of children with Crohns

 Reply posted for Leica.

Hi Leica,

I know the waiting game all too well.  Unfortunately, that is something that all of us have to try to gain control over.  We seem to always be anxiously waiting for one thing or another, blood work, test results, weight, height, aches, pains, symptoms, etc.   

It is great that he gained two pounds......we do our "happy girl" dance every time Lizzie gains.  Sometimes the docs expectations aren't necessarily attainable, but don't let it discourage you......after all, at least he gained! 

I just came back from Lizzies school Halloween party and she is doing well (thanks for asking).

Let me just give you one more piece of advice, don't forget about taking care of yourself.   After all, what would everybody do if Mama got sick.

Be well, keep us posted.

Lizzies Mom

 Reply posted for AZMOM.

Thanks for being a "bright spot".  I hope you ALL know how helpful you have been!  Hugs back at ya!

 Reply posted for Leica.

You are right - having the support is so helpful.  And I'm glad to add a bright spot.  We all know firsthand that sometimes you have to look hard for those!  Please keep letting us know how he is doing.  Some of what you have shared reminds me so much of our first months.... 

Sending e-hugs your way.  :-)

Claire's Mom

 Reply posted for Lizzies Mom.

Hi Lizzie's Mom,

The hardest part of this is the waiting game.  To see if Alex does alright on the Imuran and to see if he begins to grow.  I know we have a long road ahead of us.  It's funny that he never, ever complained of stomach aches before but now he complains most days.  Not sure if it's from all the meds. or the Crohn's suddenly causing him pain!  Again- time will tell.  We will finally meet with a nutritionist in 2 weeks. Somehow, she never showed up at our last Dr. appt like she was supposed to.  Alex has actually gained 2 pounds in the last 7 weeks but the Dr's aren't happy with that amount.  I am THRILLED to see him finally put on a little weight!  He's still not to 60 pounds yet!

How's Lizzie doing?

 Reply posted for AZMOM.

Thank you so much for your words of encouragement.  It adds a bright light to a presently gloomy situation.  So glad your daughter is doing well now and growing.  Spoke with the Dr. yesterday and told him about Alex's achy bones, leg cramps and tiredness.  He said not to worry- it's all fine!  Well- I know it's not normal for him so I am continuing to keep an eye on him and I jot down how he is feeling each day in a diary.

Thanks again for being so kind!  As unfortunate as it is for each of us to have sick children- it's nice that we have each other for support.

 Reply posted for Leica.

Hi Leica,

You and your husband are right.  As parents, we know our children best and often the docs need to be reminded of that.   As for your son being in the 7th %tile, have faith.  Lizzie had been there too for quite some time....now she's up to 20!   It will take  a while, but once his body adjusts to whatever dietary/lifestyle changes, meds, etc. that his #'s will start to become at a more therapeutic level and he will start to grow too!   We still struggle every day with adding add'l calories.  I hope he is feeling more himself.  I think starting any new med takes time.  Let me know how he is doing (and you too).

Lizzies Mom

 Reply posted for Leica.

Leica - I just wanted to give you some words of encouragement.  I know you will watch your son like a hawk.  :-)  I hope he will do well. 

I don't talk much about Claire's JRA but she was diagnosed with arthritis when she was 3.  We tried special diet, naproxen, methotrexate, etc, etc and even as we progressed through all these things....the progression of the inflammation was relentless.  She went under anesthesia to get steroids injected into the joints.  It kept getting worse.  She was up to 14 joints affected, could literally hardly walk and quit feeding herself just after her 4th birthday.  We took a leap of faith and started Enbrel - we were scared to death.  Well, it was like an answered prayer.  Within 3 weeks, she was in complete remission with a normal sed rate.  I will never forget waking up to those little bare feet running across the hardwood floor kitchen.  I burst into tears because I had forgotten that she could even run.  She had shuffled like a little old lady for so long that really, I had forgotten the sound. 

Fast forward a few years...she had a rare neuro side effect to the Enbrel and we had to stop it immediately.  Shortly thereafter, up rears the ugly head of Crohn's.  She can never have another TNF blocker (like Remicade/Humira) because of what happened on Enbrel.  So would I do it the same way all again?  YES!  Her quality of life was so much better that I would do it all again.  We all want the best for our kids. 

I will tell you to be patient with the Imuran.  It takes awhile.  Claire eats a healthy diet (mostly lol) and is growing like a weed.  I will be hoping and praying Imuran will give your son the relief he needs.  And if it doesn't, I know you'll keep searching for the right path.

Claire's Mom

 Reply posted for Lizzies Mom.

Hi Lizzie's Mom,

     I am NOT smarter than you by turning to this sight.  Unfortunately, I have experience. My husband was diagnosed with a fairly rare disease years ago and I was feeling helpless and alone back then, so I started looking on the internet for help. This time around, I knew to look for an organization for CD,  Everyone has been so helpful here and I sooo appreciate it.

     As for Lizzie's growth, my daughter who is now 17, was a "late bloomer".  She didn't start growing until 13 1/2 and is actually still growing a bit the last time the Dr. measured her.  She is over 5' 8 1/2" tall now!  So keep the hope for Lizzie! Girls do grow past 14 years old!

     As for Alex, I don't think he has ever been more than 7th percentile on the chart.  His lack of eating has always been an issue but the Pediatrician always told me that as long as he stayed on his curve he was fine. I do believe doctors need to give more weight to parents opinions about their children. We are the ones that know our kids best!  So I do worry about Alex and his growth because we are seeing a huge difference in his friends height now because they have started growing at a faster rate recently.

     My husband and I were a bit shocked with the outcome of the second opinion.  It's as if the Dr. had spoken to the Hopkins Dr's.  He said exactly what they said.   It was a little chilling.  So Alex is taking the Imuran.  He was lethargic last night at dinner, seemed to be himself this morning but this afternoon he is tired and not acting like Alex.  He felt warm to me earlier but didn't register a temp.  I will keep my eyes on him closely this week.  He had better not be getting sick again- or- could it possibly be from the Imuran?????  The saga continues.... Have a great evening!

 Reply posted for Leica.

I am glad you were able to get your second 2nd opinion.  Though a bit taken aback by the outcome.  I really am an optimist at heart.  It's a  good idea to continue doing your reading/research, and making some dietary changes.  

As you know, Lizzie has struggled with growing too.  Thankfully she has begun to grow/gain, but at her own pace, which is slow.   She is only 20% tile for weight and 50% for height now, but I'm not complaining.  We had to work with a nutritionist to add calories to her day-to-day and it is still a struggle. 

The fortunate part for you is boys typically have a longer "window" for growing  They generally are later in growth, many through high school and into college.   Unfortunately for Lizzie, girls generally are finished by 12-14 yrs.  Though she may be a little delayed there too because puberty may also be lagging (it often is in these situations).  Only time will tell.

I know how very overwhelming it can all be.  You are smarter than I was, because you have turned to this site.  It wasn't until well into our life with CD that I ended up here.  There are lots of caring people that are only here to help those families that are stricken as we all have been.

Keep me posted on how things are going.

Lizzies Mom  

 Reply posted for Lizzies Mom.

Hi Lizzie's Mom,  Second opinion says Alex needs the Imuran to enable him to grow and that this is "crunch time" for him.  We have to do it now- later is too late.  So- we started him on the Imuran on Thurs.-  I will continue to research to get him off of it.  As for the flu shot- this Dr. said he should have it so he will get it as soon as he gets rid of his cough from being sick last week!

Hope Lizzie is continuing to do well :)

 Reply posted for AZMOM.

Hi-  Wanted to get back to you about the second opinion.  Alex started on Imuran on Thursday (we are still NOT AT ALL happy about it) but the 2nd opinion fells strongly that he needs it to grow.  In the meantime, I am continuing to slowly change his diet, look into probiotics that I hope to start today and research galore in hopes of getting him off of some of these meds.

As for the flu shot, this Dr. also felt Alex should have it so he will get it as soon as he gets over his cough from when he was sick last week.

 Reply posted for alanschachter.

Alan- Can you give me examples of what your daughter eats for breakfast on school mornings and what she takes for lunch.  Also, does she eat at restaurants and if so, what does she eat? Thanks- Wendy

 Reply posted for alanschachter.

Hi Alan-  Thanks for the info. on the meats.  I will concentrate on the dairy, grains first. 

We keep kosher for my husbands side of the family.  I agree- Alex is way too important and we will do anything we need to do to get him healthy!  If that means my husbands side of the family can no longer eat here, I'll buy kosher trays if I have to (and I'll have to!)  His family is being very understanding about the situation and know Alex COMES FIRST.

I just bought Robb Wolf's book- about the Paleo Diet and bought the SCD book and have the list of legal and illegal foods.  Lots of unwanted changes will be happening in our house (in the long run- it will be better for all of us).

Thanks again so very much for your guidance!  Wendy

 Reply posted for Lizzies Mom.

Hi Lizzie's Mom-  Alex was feeling a bit better this morning but now he's getting sluggish again and laying down!  Hasn't had a fever- so that's good.  Didn't eat much soup yesterday- actually hasn't eaten much of anything for 2 days now.  That's never good because he is so small in the first place!  Thanks for asking about him!  :)

As far as the flu shot goes, my other 2 kids got it today.  My husband has a disease that if he gets pneumonia/bronchitis- he could get very ill so we have had the kids get flu shots to protect him for the last few years.  I am going to wait to make a decision about the shot after our second opinion gives us his thoughts.  I think I am swaying more towards NOT having Alex get it. (The GI Docs and Pediatrician say he should get it) My husband and I will get the shot so Alex should be protected from all of us at home- I just worry about him around the kids in Middle School.  To be continued, next week, after the second opinion....  Have a great weekend!

 Reply posted for Leica.

How's your son?   Hopefully the soup and rest has him on the mend. 

Our pedi gi's office recommends the flu vaccine.   Though I have never given it to either of my children.   I am funny that way, sometimes I do go against the docs opinions.  Knock on wood, we have never had it.  Guess I feel our country as a whole has gone vaccine crazy.........the difference between the immunizations my 14 yr old received and the new babies today is extreme.  Who knows, it may be causing some of these immune system deficiencies .....not saying it does, but it may??

In the meantime, my recommendation is ask his pediatrician and gi doc and see what is best for your own family.  You will find lots of different opinions here.

Lizzies Mom

 Reply posted for AZMOM.

Hey how did your second opinion go?

 Reply posted for Leica.

My daughter's doctor always wants her and her family members to have the flu vaccine.  Be sure it's the shot, there's no attenuated (weakend but not dead) virus in there.  There is, however, attenuated virus in the flu mist.  That's why you only want to do the shot.

Claire's Mom

 Reply posted for Leica.

Does anyone have thoughts about Alex getting the flu vaccine while being on Entecort?

 Reply posted for Lizzies Mom.

Hi-  I was able to go back to bed for a short while once the other kids were off to school. We already use those teas in our house, my daughter finds it calms her tummy issues so she has been using them for a few years now.  Just made a big pot of soup and hoping he feels better quickly! Thanks for your well wishes and advice!

 Reply posted for Leica.

We've all been there....up @5 AM w/a sick child (fun/NOT).   For now, you have hopefully just the common cold/virus that goes around this time of year in school.  It is most important to keep him hydrated.  Lots and lots of fluids, soups, teas.  When my daughter's stomach is off, I reach for either the chamomile or peppermint tea.  The chammomile we use when her stomach feels anxious/off and the peppermint we use for nausea. 

I hope he is feeling better and that you are able to get a bit of rest for yourself.

Lizzies Mom

 Reply posted for alanschachter.

Hi Alan-  Where do you buy these meats?  Natural grocer?  We keep kosher.  I'm sure I can't get these meats "kosher" but I need to look into it.   I have even more work ahead of me.  It's overwhelming.  It's easy to say "we can't worry about keeping kosher anymore", but then it becomes an issue with having family over to eat.  I have to keep researching to find all options before I start making decisions!

I sincerely appreciate you help.  Wendy

 Reply posted for Lizzies Mom.

Thank you for your message.  I am eager to hear what the 2nd opinion has to say this week.  Meanwhile, Alex woke up sick in the middle of the night (that's why I am up at 5AM). He will be missing yet another day of school. This will be his first "cold or virus" since being on entocort. UGH.  Have a long road ahead of us.  I have to get him healthy!

 Thanks for being there for us "newbies".  Hope your daughter is feeling good!  :)

 Reply posted for Leica.

Sounds like you are doing everything I would suggest, seeking another opinion and questioning the current docs plan of meds.   I share with your family's concern with the "big gun" meds (there is too much at stake/too much unknown).  (Though for some it is the only option left after trying LOTS of other options have been tried and failed).  

I've been coping with CD w/my 10 yr/old.  She was officially diagnosed when she was only 4, but sick from infancy.   I recommend you read everything you can get your hands on. I noticed a significant difference in her after meeting with a nutritionist and making some changes to our day-to-day.   It turns out, our family was eating waaaay too much fiber for her "special belly".   Our doc prescribed a low fiber and low residue diet.  

Lizzie too shared with your son's  "failure to thrive".   She has had her ups/downs, but is now back on the right track (knock on wood). Our nutritionist met with us on the subject and helped us in adding calories to her daily intake.   Lizzie does best w/eating more frequent smaller meals and "safe" snacks in-between.

My fingers are crossed for your 2nd opinion.   Though the diagnosis more than likely will remain the same, hopefully the recommended course of treatment can be less evasive.

Lizzies Mom 

 Reply posted for alanschachter.

Hi Alan- I am the woman who wrote to you on FB (Wendy C.). It was very late into the night and I apologize for not explaining myself! Thank you for your post.  Will be looking into different diets like SCD, asap.  Have you ever tried spinach and sunflower butter for your daughter? Not sure that I could get my son to eat spinach!  The Dr's told us today to have Alex stay away from fresh veggies, nuts, corn and popcorn after telling us on 3 occassions that diet does not play a factor.  I knew better so I've been investigating it myself!

I just wish we weren't feeling so pressured to make a decision but the Dr's (and my husband and I) are concerned about his lack of growth.  Thank you for your advice about diet and meds.  You have been very helpful.

Will keep in touch

 Reply posted for CA mom.

Thank you CA Mom!  That certainly makes me feel better that your son began growing and gaining weight but these heavy duty meds still scare me.  My husband and I have decided to wait for the second opinion next week before we make our final decision - which will also give me more time to look into different diets.  My son has never weighed over 62 pounds and over the summer was down to 56 and he is only 4'2".  Very tiny compared to his friends that really shot up over the summer.  I'm sorry you are going through this but glad your son is doing well.  Keep up the great work!  :)

 Reply posted for Leica.

Hello,

My son started on mercapturtine at 13 (I believe this is similar to your son's med).  I was terrified also of side affects, but he has had none.  Actually, after he was diagnosed and got treatment, he started to grow and gain weight.  I have not regretted having him take the meds because he was much better for it.  Hope that helps!

 Reply posted for AZMOM.

Thank you so much, Claire's Mom for your very encouraging words.  Off to see the Dr.  Wish us luck.

 Reply posted for Leica.

A second opinion is good.  You need to be sure you have all the information you need and are comfortable with the decision to start the medication.

My daughter is 7 and has been on Mercaptopurine (similar to Imuran) for 16 months.  She's done very well.  None of the side effects that people often mention.  No hair loss, no opportunistic infections, no nausea, lab work normal, etc, etc, etc.  She had one stomach virus courtesy of her "healthy" big brother but all the kids in our neighborhood got that one!   She is eating a healthy, normal diet and growing like a weed.  At our visit just a couple of weeks ago, she is in the 90th percentile for weight and 92nd percentile for height.  It was the right choice for us. 

Do your homework and definitely ask lots of questions.  I say the same thing in almost all my posts but here it is.......  I personally don't believe there is a "one size fits all" treatment out there for our children.  You have to work with a good doctor to find the right mix of diet and medication for your child.  Trust your instincts and know that you aren't alone.  There are lots of folks out here that will be happy to share their stories with you and listen!

Keep us posted.

Blessings,

Claire's Mom