Well I am back--Have Lots of Questions~~~

Hi Everyone,

Well here I sit in between boughts of crying so please bear with me. First I have been here before and sorry I have been absent I guess part of me has/was been in denial that this isn't for real and guess I was trying to avoid this and not face it (big mistake BTW).

Also this may be kind of lengthy, have a bunch of questions that I am looking for any insight experience on...

Also I know my story doesn't hardly compare to some of the stories I have read, but please know that I say prayers every night that EVERYONE can manage this and find a cure for everyone affected by this terrible disease.

That being said, a little recap--my 5 year old twin daughter was diagnosed with Celiac in July 2010 and CD in Sept 2010. The most interesting part is we are no longer on Gluten free diet and the Celiac diagnose has been taken away. She didn't get better on GF and actually got worse, we didn't see improvement until we were on Pred (6ml), we weaned off and at 3ml symptoms (vomitting & diaahrea & explosive stools) returned. This is when they told us it was CD. We started Imuran 25mg and after a month started to wean very slowly off of Pred. Unfortunately Wednesday night before thanksgiving was our 6th day a the 3ml of Pred and the symptoms came right back again and threw up for the next 3 nights until her stomach was empty. The weird thing is that she ate some light food during the day and didn't vomit at all. Sunday was fine, but she just spent the last hour wretching everything out of stomach again.

Two weeks ago at last appt, they had tested her levels with Imuran and they were barely on the scale so we increased the dosage to 37.5mg and continued to wean down the Pred.

Does anyone have any experience with this type of track record?

We are concerend that we are giving her the two med--Pred & Imuran to close together and that may be possibly upsetting her stomach...thoughts???

I feel we have been on pred too long and concerned about side effects as we continue, what is considered to long?

But how do I get her off the pred? I feel this is trial and error and right now we are dealing with "error"...

What if the Imuran doesn't work? what is typically tried next?

How long does it take to figure if it is working or not?

Sorry for all the questions, I am sure I can keep going but will stop here for now and see what you all have to say. I feel we need to be doing something more to help her but I have no idea on WHAT else to do!!!

I still haven't experienced and pray to God that I don't have to experience some of the scarier stories I have heard but it absolutely breaks my heart to have to be holding my daughters hair out of her face while she throws up repeatedly. I would give everything I have to make her not feel this way...

Thanks for your time and I promise I will try to be more available as well.

Take care,
Scott K
Dadofcrohnsdaughter
Jillian, twin daughter diagnosed Sept 2010 CD

Hi Scott. I'm really sorry to hear that things aren't going so well. It's so difficult and frustrating. Symptoms seem to be different for everyone, and there are so many different medications etc - it's really hard as a parent to know what to do.
My son is also five. But he was diagnosed at two, so I guess we've been dealing with it for a while now, and it does get a little easier as you start to understand your own child's symptoms and what does and doesn't work for them.

It is trial and error - and in some ways if you really do feel it's more 'error' at the moment it's probably worth following your instinct and pushing for a different approach with the doctors. We've certainly done that, and tried many different options over the years.

With regards to your specific questions, we haven't experienced Imuran yet, but have had dealings with Pred and various other drugs. I would be interested to hear from others as to the vomiting symptoms, as something about that doesn't sound right to me. We've seen occasional vomiting during really bad flares - but it's not ongoing. We certainly didn't get it with the Pred. In fact our doctor has always told us to get in contact if there is persistent vomiting, as it can be a sign of a blockage.

Our current doctor also really favours the elemental diet approach, as opposed to pred as a way to achieve remission. My son is currently in his 5th week of no solid foods, just drinking peadisure (we're in NZ, so I'm not sure what the US equivalent is). This drink isn't strictly elemental - we did try the harder stuff but he didn't tolerate the taste for long - but this drink is pretty close and does the trick). He's doing really well and has put on 2kgs in this time, with great energy levels. He'll be on it for another 2 weeks. It basically rests the bowels and allows some healing. He still gets diarrhea - but it's more a matter of liquid in, liquid out - it's not frequent and there's no pain.

We do know from experience however that this approach won't hold him in remission for long - so we are now starting him on methotrexate as well. Imuran is a possiblity if that doesn't work. But I guess my point is that pred isn't the only way to achieve remission - and things like the elemental diet are far kinder on the kids, and you're not mixing the medications.

Anyway - I hope that can help a bit. It's one perspective anyway. I certainly know where you're at and it's very difficult. Really hoping you find the right way through it all.

Gillian.

Hi. My daughter is now 7 and was diagnosed at 6. She started on Prednisone in the hospital and Mercaptopurine (6MP works in the same way as Imuran). It usually takes 3 months for the 6MP (or Imuran) to reach a therapeutic level. If it is working, then she should be okay without steroids. I will tell you that in for us, it took longer than the typical 3 months. It took just under 5 months to completely wean the steroids. When we would start lowering the dose, Claire would be very ill. Similar to your sweet little girl.

At 3 months (or sooner sometimes) there is a test they can do to see if the drug is at a therapeutic level. That may be what you have already done. When Claire did so poorly at 3 months, we found her levels were way too low and had to try and give it more time.

Hang in there, you may just have to use the Prednisone longer than you would like. I'll be praying that the Imuran works for her! I should add here that Claire has been off the steroids for over a year and maintained remission just on the 6MP. It can work so hopefully it will work for you all.

Blessings,

Claire's Mom

Scott,
Imuran was one of the drugs I tried a few years ago. Actually it was the generic Azathioprine. It did not work well for me. Doc kept raising the dose and I kept feeling worse and worse. i finally went to a new doc and had to go on Pred to feel better. I don't know anything about pediatric Pred dosing so not sure how big that 6mg dose is for a 5yr old.

But, as most of us know, Pred can be a life saver when nothing else is working.
I think 6MP is similar in action to Imuran but never tried it. The next step might be Remicade or Humira, but I don't know if they are approved for children.

If she is throwing up, does the doc say she has Crohns in her stomach? Or maybe just a narrowing in the small bowel? My Crohns started as a narrowing in the duodenum when I was about 19 (which caused me to throw up). Pred fixed that up way back then. I've been taking Protonix for a number of years for Crohns in the stomach which has not bothered me in years.

My best wishes to your daugher (and her twin) and you. Your story is just heart breaking. I hope she finds relief soon.

CDDad said:

Scott,
Imuran was one of the drugs I tried a few years ago. Actually it was the generic Azathioprine. It did not work well for me. Doc kept raising the dose and I kept feeling worse and worse. i finally went to a new doc and had to go on Pred to feel better. I don't know anything about pediatric Pred dosing so not sure how big that 6mg dose is for a 5yr old.

But, as most of us know, Pred can be a life saver when nothing else is working.
I think 6MP is similar in action to Imuran but never tried it. The next step might be Remicade or Humira, but I don't know if they are approved for children.

If she is throwing up, does the doc say she has Crohns in her stomach? Or maybe just a narrowing in the small bowel? My Crohns started as a narrowing in the duodenum when I was about 19 (which caused me to throw up). Pred fixed that up way back then. I've been taking Protonix for a number of years for Crohns in the stomach which has not bothered me in years.

My best wishes to your daugher (and her twin) and you. Your story is just heart breaking. I hope she finds relief soon.

Click to expand...

Remicade is approved for children, I know they try to stay away from it as much as possible because the risk of developing certain types of cancer are raised considerably when adolesents take remicade or humira. I am currently on both without any results. Everyone is different, and I feel for you and your baby girl. I can't imagine one of my children going through dealing with this disease, its hard enough for adults. Best of luck to you and your entire family. I hope you get the answers you seek. You are in my prayers. :rosette2:

Hey Scott welcome back!! I guess in so many ways we have been lucky with EJ's crohns. The pred taper quickly got him into remission and 6mp has pretty much worked since. Like AZMom says, it does take some time to become effective. We were told up to 6 months but I think about 4 was more realistic. I'm glad NZ and AZ have some practical advice for you. Good luck Scott!! I hope you all can quickly find what works for Jillian!!

Hey Scott, one more thing. Is she taking anything like Prevacid or Prilosec? Claire vomited frequently too and her doc had her on Prilosec until the Prednisone was weaned. I'm not clinical enough to tell you why that was important but he was pretty adamant. Worth considering if you haven't added that yet......

Thinking of you all -

Claire's Mom

Thanks everyone for all your comments!

the thing I am confused about is the vomitting, we are now on day 6 of it. can imuran be contributing to this?

This is new and really haven't see the vomitting like this, before it was almost always out the back end and really the only thing we have changed in the last 2 weeks has been weaning pred done to 3ml from 3.5 and increased the dosage to 37.5 mg of imuran and of course all on direction of our Doctors.

We did do the test you mentioned AZ to check the levels of Imuran and it wasn't even on the scale yet so that is why they had us increase the dosage and we are also on Prevacid but only since saturday, again on recommendation of Doctor.

We were all good (at least as good as you can expect) when we were at higher dosage of Pred, and that is what I think we will end up doing. We have increased it back to 4ml, but may have to go higher after we talk to Doctors.

My big concern is that do continue on Imuran and give it more time or go to a different drug....also what is 6mp? I have seen that before... is it Imuran or something siimlar, it seems more people I have talked to are on that and trying to guess (because don't think Doctors are doing anything different then that too ) if we should switch medicines or stay w imuran for now.

Anyways that is all for tonight, i really appreciate everyone thoughts, prayers and words.

I hope someday soon I can be giving advice like you are all doing versus asking for it,

One last question... is it possible to run out of tears?:sign0085:

Scott, Imuran is the same as Azathioprine. Under the wiki article, short term nausea is listed as a possible side effect. My understanding is that 6mp is essentially the same med. 6mp is a direct formulation of what Imuran is converted to by the body or something like that. I do know that the GI should closely monitor her blood work to be sure it isn't having negative side effects as she builds up her levels.

They'll find what works for her Scott. It will still ALWAYS be on your mind but life does return to normal. It's definitely a new normal though!

Mark,

Thanks, yes I know they have checked her levels once around a 5 week point after being on Imuran and the good levels were barely on the chart, guess they look for something minimum of 200 (of whatever measurement they use) and then the bad levels were barely a trace.

After that is when they increased the dosage of imuran which was about two weeks ago.

I am hoping that we just don't have enough in her yet and we should STOP weaning off of the PRED until we see higher levels.

Just very concerned about her vomitting, pretty much has not eaten anything of substance in over a week. But we are trying to keep fluids in her as well.

Well we are going back to Doctor tomorrow, so we will see.
THanks!@!!

Aww! My heart goes out to you as a crohnie and a parent. This has to be especially hard on you to watch your daughter. I am in my 40's and I think my 6mp is a pediatric dose. I can not handle much of the 6mp. I take one quarter of a tablet of 50mg 6mp--and an Allopurinol pill. It took me some time to get it to work, but thankfully it does. I was pretty dehydrated from my crohns before diagnosis. She will be fine--I know its gotta be tough for you...But, the meds will hopefully kick in for her...Something...I will keep you both in my prayers. Stau strong Dad...Cry here with us! Hugs....Sue

My 9 year old would throw up with prednisone. He took rx prilosec twice a day to control the stomach irritation from prednisone.

It's going to take a long time to get the imuran into the therapeutic level. My understanding is that the prednisone or entocort is the stop gap to get the inflammation under control during this time lag (between starting imuran and therapeutic levels).

My son couldn't tolerate pediasure so we bought nutrition breeze off of amazon.com. This was easy on his stomach while we were waiting for the stomach issues to resolve.

Are you talking to anybody in the doctor's office as well? When my son was diagnosed, our doctor assigned a case nurse who would call us to see how everybody was doing. It takes time to adjust.

She didn't ever throw up before on Pred though.

I am afraid we weaned off Pred too fast and now dealing with flaring and needs to subside, just taking longer then I thought

We don't really have anyone that checks up on us, we can call and will hopefully get a call back the same day, but we are going back in to office tomorrow.

Just so many variables and unknowns and guessing, which I am findint out is the norm until we get things figured out...just tears my heart to see her like this.

ANd the amazing part its me and my wife crying and she just rolls with it... kids are amazing. She pukes her guts out and jumps into my arms and smiles and says "all done daddy"....

Definitely ask about slowing the Prednisone wean. I think you are on the right track. I'll be anxious to hear what her doc says.

Yes, our children are AMAZING. I remember shortly after Claire was discharged from the hospital, she came out of the bathroom with a big grin, high fived me and said "No blood!" like she had just scored an NFL touchdown.

Hang in there.......

Claire's Mom

Thanks everyone, I am truly hoping it is just that we weaned to quick off pred, I am not sure why, but I am so scared of keeping her on Pred to long, but after this week I don't think i will be. I will actually be more scared to wean her off again in the future, scared out of my mind that we will repeat this week.

but I am slowly coming to the realization that this up and down will become part of our life and the "Norm" as someone put it... don't have to like it and hope I don't get to used to the down but will pray and hope for the up.

I will update you all on what the Doctor says, but I am expecting for him to tell us to increase pred and stay the course for a while until they can check her Imuran levels in a couple weeks.

Thank you all so much!!!

Hey there so sorry for your troubles and im sorry if somebody suggested it already but Im now in a rush and couldnt read all the posts but is She eating a fair bit when shr takes the imuran? I am on imuran and in when I started it I threw up regularly because it is very hard on the stomache. My GI suggested a snack and a glass of milk (specifically milk because its heavier than water) when I take the imuran which seemed to help a lot.

How did the appt go Scott?

Well it went okay, the only thing we really changed was the schedule of when we give meds to her, which does make sense now.

Prevacid first thing in the morning on empty stomach

Pred about 30 mintues later with breakfast (going to be tough because she doesn't really eat anything at breakfast

Then we talked about imuran making her vomit, the night before appt, we found the zofroran (for vomitting) we had at the beginning of this nightmare and gave it to her and it appeared to work because she made it thru the night...so she wants us to continue giving her the zofroran and possibly splitting the dosage of it, 12.5mg at lunch and the 25mg at night time.

She didnt' want us to increase the dosage of the pred again though and am NOW sitting her VERY VERY concerned about what is going on. She really wants her off the PRED, which I do too, but if it helps her..???????

My reason for concern again is that we had made it thru 3 night of sleeping and no vomitting, but she had explosive diaahhrea (sp?) 3 times thru the night last night and then threw up after she came downstairs...

Its almost like we are back at day 1 of this, its like she is mal-absorbing everything and its all just passing right thru her, which it did in the beginning and of course the throwing up.

What I don't understand is that I asked our Doctor what is next... and she said if this doesn't work then we are onto Remicade, but it seems like there could be other things we could/should try first...

I don't know, I am still utterly confused and like our Doctor said, this is a chemical experiment we are on, and my daughter is the experiment :ybatty::confused2::ymad:

She won't eat anymore, anything she touches she takes two bites of and pushes it away...we are trying to keep fluids in her, but worried about the direction we are going.

Just feel that we need to increase the PRED back to where we were and either give the imuran more chance to work before we throw in the towel on it. I would rather live with side effects of PRED then moving to remicade...

Sorry for the book again....

crazycanuck said:

Hey there so sorry for your troubles and im sorry if somebody suggested it already but Im now in a rush and couldnt read all the posts but is She eating a fair bit when shr takes the imuran? I am on imuran and in when I started it I threw up regularly because it is very hard on the stomache. My GI suggested a snack and a glass of milk (specifically milk because its heavier than water) when I take the imuran which seemed to help a lot.

Click to expand...

Crazy,

Thanks for the note, what I don't understand is our GI told us not to take imuran with milk or dairy of any kind as it would not allow the imuran to be absorbed properly.

Thoughts?

Dexky said:

How did the appt go Scott?

Click to expand...

Mark,

did your son try Imuran first?

What exactly is 6mp? I asked our GI and she said its pretty much imuran but made with different stuff ????

And what is the Alsocol? (sorry not sure if that is right, can't see it while I am doing a reply)

Just so desperate to get a right combo and feel that PRED is our only answer at the moment because that is what worked.

I am soo utterly confused, angry, sad at the same time....

Thanks
Scott

Scott, that's basically my understanding as well. Imuran, Azathioprine and Mercaptopurine(6mp) are all the same drug. I think 6mp is the direct formulation of what your body breaks down Imuran into. 6mp, I think is considered the most risky of this family. EJ's bloodwork early on showed that his body would be able to metabolize 6mp well. We are currently on an experiment to adjust his dosage. He gets blood work again tomorrow to see if it's working.

Asacol and Pentasa are both Mesalazine formulas. They are made to be released in different parts of the system depending on where the disease is most active. Asacol is usually considered a UC med because it is released in the colon. At first, our GI thought EJ had UC because most of his inflam. was in the colon.

Mostly though Scott, I'm just like you. If it is working, please leave it alone. But with pred and what I've read on here about it, I'd say your doc is spot on, especially for a child. It just causes too many other problems. I don't mean the visible moon face,weight gain. It robs the body of calcium and that can't be good for a growing child. We've been told Remicade is the GI's next choice for EJ as well. Like you, I hope we don't need to go that route, at least not for many years to come.

I hope they find the right med balance for Jillian soon Scott. It's horrible to think of our children as experiments but at least the GI is honest about it. Good luck and keep us updated.

Hi Scott,

I feel terrible for you and your daughter. I can't imagine watching my baby go through this. I am so sorry.

I have been on Imuran, it caused vomiting for me... because it gave me pancreantitis. From what you are describing of her symptoms it does not sound too far off, specially if she normally did not have vomiting. I assume they checked her levels for her pancreas? I would be calling the doc just to be sure.

I understand totally what you are saying about pred working. It works wonders for a fix of a flare, then you get to 10 years of the disease and your bones are brittle and you react to prednisone with mania, depression, heartburn, among other things. there is a thread here on corticosteriod induced mania, maybe you should take a look at it.

I personally prefer the biologics to prednisone. I do have some minor side effects from Humira but they are livable compared to crohn's or any of the other meds I have been on. The only thing I can think of that could be tried next aside from Remicade is Methotrexate, but that in itself has some bad side effects (I am not sure if it is approved for children).

Good Luck to you, keep us posted.

Methotrexate is approved for use in children but like 6MP and Imuran, it takes a long period of time to start working. But it would be something to ask about if you don't get anywhere with Imuran, Scott.

Like everyone else has said, Prednisone is good - but only for a short short period of time for all the reasons already said.

I hope things turn the corner at your house soon. I know all to well the feeling of "Why couldn't it be me instead of her?" I used to think that when I watched my daughter sleep.

Thinking of you all -

Claire's Mom

Thanks everyone, so still utterly confused. We are going to be talking to the Doctor again, because she is still throwing up once a day and got to believe its because the increased dosage of the imuran. I am afraid for what will come next...

Guess my next question is about the remicaid/humira one of the first things the Doctor mentioned was that extended periods on remi of over 33 months lead to high risk of cancer...

When you go on Remicaid are you on it forever as a maintenance drug? or is it to get you into remission and then can go off of it? I am assuming it probably varies again from case to case just curious about timing again, with Remicaid will we see improvement quickly? What are some of the side effects typically?

I am just so scared on a smaller level that if we dont get this under control my six year old will spend christmas in the hospital if we are not careful. I know in the big picture it doesn't matter because if that is what it takes for her to be safe and under care...uuuggghhhhh....

Does anyone have any ideas suggestions to say to the doctor before we try Remi? but it sounds like anything else takes too long and then that means longer on the pred.... uuuggghhhhhhh

Thanks again for all your time and answers to my questions.

You will get other answers probably more thorough than mine but here's my two cents.....

No, there is not an exit strategy to Remicaid. It is a drug that if you go on/off, the body can develope antibodies and it will no longer be effective. The response to Remicaid can be very quick or it can take some time. Just like IBD is so individualized, so it seems the response time for medications can be as well.

I know little about going on/off Humira. I'm sure one of the folks on here can offer more.

The risk of lymphoma, although you have to consider it, is low with the biologic drugs. There is a medication risk/benefit presentation on the CCFA website that might help you with some information and perspective. Let me know if you want the link and I'll be happy to track it down.

Hang in there......

Claire's Mom

Well thats weird but would make sense. Id listen to your doc though and avoid the dairy as it could be different for her? Not sure exactly but definately (if you can) get her to eat a fair bit when she takes it because if anything like my stomach I puke if I dont.

As for the remicade that was my next step after imuran didnt work on its own. Your path through the drugs can be very much different from others all based on what your doc has seen work best with similar cases. Remicade is approved for kids. Its been a life changer for me so good luck no matter what your onto next and hope shes getting better soon.

Edit: sorry those increased cancer risk levels arent really as bad as they seem to be. Well atleast to me. Peaches added in the remicade club section that your risk of lymphoma increases from 1/10000 to 3 or 4/10000. This mean a .04% chance shed develop it. The thing my doc is most worried about would be cold and flu because it suppresses the immune system.

I know Humira's loading dose for an adult. You get 4 injections then 2 injections in 2 weeks after that you go to 1 injection weekly.

For me Humira has been a life saver, only thing that has worked that I did not react to. I will be on it till it either does not work or I develop anti-bodies.

You might want to try pedia-sure, boost, or ensure for her to see if you can get some calories and nutrients into her. I go on a clear liquid diet for a few days when I get into a really bad flare up.Sometimes the break on the guts helps you feel better and lets some of the inflammation go down. When I start to eat again I stick with bland mushy food, like mashed potatoes, soups no veggies at all in them, sorbet, egg salad (don't ask me I love it when I am in a flare up). Try to stay away from anything high fiber, sweet, fatty, dairy till you know what foods she triggers from. (for me its any fiber at all)

If you think she is getting dehydrated, take her to the ER. Sometimes IV fluids do wonders to helping you feel better.

Is she on some sort of anti-nausea med like zofran? that could help the vomiting.

She is on Zoforan and that seemed to help at first, but she is still throwing up just about every day, but its never at the same time, just when we think we have made it thru the night she wakes up and throws up at 8am.

we tried splitting the dosage today and at least for now it seems like she has has a better night according to my wife, because I am travelling today and makes this even harder being away...

So who knows, every night it is a waiting game to hear the little pitter patter of feet scurring across my bedroom to the bathoom....

She is still eating during the day, albeit smaller bites and she is drinking fluids, so I am not too worried right now about dehyrdration at this point, we have already been to ER once this summer for IV fluids when we were trying to figure this nightmare out.

BUT, her continuing to throw up is NOT okay and we are supposed to be talking to our Doctor on Tuesday to get an idea on what is next, hopefully she makes it thru the night with the splitting the dosage...so keep your fingers crossed....

Also we have tried the pediasure drinks, but she doesn't want any of it, its so frustrating dealing with a 6 year old because she just refuses and doesn't fully understand that its important for her to feel better, and I can't obviously force her either ...

Any ideas to the parents on tricks, tips on getting kids to take the supplments, etc....

Thanks again!!!

Hi Scott,

I'm so sorry to hear you are all going through this.

I think you are right to be concerned about the continued vomiting. Where is daughters Crohns located? Is there a chance that the vomiting is due to narrowing?

Have you tried Gastrolyte (not sure what it is marketed under in the US) in the ice block form as a way of replacing minerals and fluids?

My son (17) has just been diagnosed with CD and he too is going down the Pred and Imuran path. The GI said if that doesn't work then he would go to Humira, I too am hoping it doesn't come to that.

I wish you all the luck in the world that your little girl is able to turn the corner very soon and find relief and peace.

Sending loads of hugs, :hug:
Dusty

Kat,

Thanks for the reply.

She had inflammation in terminal ileum. She also had villi atrophy in the upper area of bowels, can't remember what it's called, they thought she was a celiac first, but GF didn't help at all.

So time will tell but I think we will be heading same direction w remi if she doesn't get better soon

Thanks
Scott k

I have found bribery works with my son. Get a toy she wants and tell her she can have it if she drinks the pedia sure.

Hey Scott,

Since the CD is located in the Terminal Ileum I would be asking the doctor how can we know know for sure what is causing the vomiting, is it the medication or could it be blockage?

Does your daughter have abdominal pain?

Does she have pain anywhere else? Like joints, headache, eyes.

Dusty.

But she is still pooping, albeit it's pasty and soft like it was at beginning of this nightmare

Not really headaches , every once in a while she will complain about belly pain but not like knock her down crying pain though....
She does have pain occasionally in her knee joints occasionally and that has been attributed to some of e CD as well.

I will ask her doctor tomorrow about blockage just in case though too.

Thanks again....

Yeah, I still think it's worth asking about narrowing (probably a better term than blockage). My daughter certainly had this and in her case her bowels were still working.

Dusty.

Wow, I've missed a lot Scott!! I'm glad to see you getting some advice now from people much more competent than me. Good luck to Jillian today, I've got my fingers crossed. Hope to hear that splitting the dose is all she needs.

Dusty!!! I'm so glad to see you!! Scott....I'm going to give you the best advice I am capable of....always listen to Dusty!!

Well just talked to my wife and they all over slept and running late for school which I am very happy about because that means she made it thru the night and actually woke up this morning and said her belly didn't hurt!!!

Maybe splitting the dosage is/was the key, but I have cautiouse optmism, we have skipped a day before of vomiting and shows up next night, but I will take small little victories.

When my wife talks to Dr today she is going to ask about everything u suggested Kat, thanks

Thanks again everyone, its really really nice to have someone to vent to....
Scott k

I'm glad she made it though the night! Kat is right it could be a stricture or partial blockage. Good Luck, I hope the doctor has good news for you today.

How or what would they do to determine if it is or not?

I am not sure in the small bowel, my disease stays in the colon. They always see them doing a colonoscopy. I assume x rays, cat scans etc or a small bowel follow through.

This thread made me cry. It sounded like everything we are going thru with our 10 year old son, Brian. Its the worst thing to see your child in pain, and you can't do anything to fix it. Parents are supposed to protect their children and this disease won't let that happen. All the powerful medicine is horrible. My son never really took anything before, and now we have to have a pill chart and a pill weekly box to keep track of it all. The GI doctors seem like they are experimenting...they don't have to live the day to day.

I read the cancer risk with remicade is higher in children and adolescents than with adults. I can't imagine the IV that often. My son hates doing the blood lab work.
If I may ask, what was your daughter's SED rate and CRP level? I am wondering how high these numbers can go.
Our GI doctor wants to go straight to Remicade after just 6 mos of being on Pentasa and Azathioprine, and two times of prednisone.
Also, I had my son's Vitamin D tested. He came back deficient. He's now on 1000 iu. I read on CCFA website that Vitamin D deficiency can make crohns symptoms worse. does anyone know about Vit B12 deficiency?

@ Scott. Matt's thickening and narrowing was easily visualised on an ultrasound. I know that initially they were loath to do CT Scanning on him due to the exposure to radiation but they also stated that due do his slim build an ultrasound would be more appropriate as a CT Scan wouldn't be as sensitive. After his colonoscopy, which confirmed CD in his terminal ileum, he went for a CT Enterogram and that was able to determine the extent of the CD present throughout his bowel.

@ Brian'sMom. I'm so sorry to hear you are also going through all this. SED and CRP rates can vary widely between people. My daughter had normal rates even though she had severe CD, my son's recent counts were SED 14 & CRP 155. SED is an indicator of chronic inflammation and CRP is an indicator of acute inflammation.

If your son has terminal ileum involvement and there has been chronic inflammation over a period of time he may very well have B12 and Folate deficiency as this is the area of the bowel where these are absorbed. Also be aware of the fact that even though his haemoglobin, B12 and Folate may be normal his Iron Stores may be depleted leading to Iron deficiency anaemia. This is not at all uncommon in people with Ileal CD. A normal Full Blood Count will not pick this up, you need to specifically ask to be tested for it. When he next has bloods drawn ask that they test for B12, Folate and Iron Stores Studies.

Dusty.

Scott,
So glad Jillian made it through the night! How was the appt today?

Brian's mom: Our SED was 64 at dx! My daughter is 10 and we give her 2000IU of Vitamin D daily under the tongue (liquid D). Dr said if necessary in future we could do B12 shots as it wouldn't be digested if she just swallowed it.

Scott,
I don't know if this will help, but here are some ideas. We had to try many flavors of pediasure before finding one Marilena wouldn't spit right back at us. We also blend them with ice to make a smoothie. If you think Jillian would do it. THe "sidekick" version of these has prebiotics, probiotics and Omega 3 which are supposed to help inflammation naturally.

We also give her 2000IU of emulsified (liquid) vitamin D under the tongue every day. This helps her absorb calcium and it gets metabolized right away (since the terminal ileum is where it would normally get metabolized but the inflammation doesn't allow it to happen). We get this from our chiropractor, but I bet you could get it at a health food store. If you want it and can't find it, let me know and I'll send you some. The way our Dr explained it to us is that Vitamin D is the car and calcium is the passenger, even if you normally take calcium, it can't get to where its going if you don't also have vitamin D. This may alleviate at least one of your worries about the pred.

I have been on zofran and still threw up, but at the tail end of the dosage, so splitting the dose seems smart! Marilena takes her prevacid in the am on empty tummy just like Jillian and 6mp at night. GI said absolutely no milk with 6 mp.

Are you guys at the Cleveland Clinic, I've heard over and over how first rate they are for CD.

This is a very informative thread Scott! I tip my hat to the mothers and the nurses!

Brian's Mom,

Sorry to have made you cry, I am sure you are doing it enough on your own, as I am too

HOpefully things get better for both of us very soon, you and your son will be in my thoughts and prayers as well...

take care,
scott k

Brian'sMom said:

This thread made me cry. It sounded like everything we are going thru with our 10 year old son, Brian. Its the worst thing to see your child in pain, and you can't do anything to fix it. Parents are supposed to protect their children and this disease won't let that happen. All the powerful medicine is horrible. My son never really took anything before, and now we have to have a pill chart and a pill weekly box to keep track of it all. The GI doctors seem like they are experimenting...they don't have to live the day to day.

Click to expand...

Kat,

Thanks for the info, unfortunately the Dr didnt' call today and none to pleased, but have a list of questions to ask her hopefully tomorrow.

Jamie,

We are not doing any supplements because she refuses anything we try to give her like that, and short of holding her down she won't take it. We have tried talking about it that it will help her, but to no avail. Probably the difference between a 5-6 year old and 10 year old is that you can prob reason with them a little more.

We are at the Cleveland clinic and for the most part very happy, its sometimes hard to actually talk to the Dr because the practice is so big, and that can be frustrating when I am having to talk to a nurse or some "fellow".

I am going to check about the vitamin D as well, she is not a BIG dairy fan this has all started, at the beginning they thought the damage may have made her lactose intolerant, and we have tried the milks, pills, and what have you , but at the end if she knows its different she doestn' want it...uuggghhh

talk to you all soon,
Scott K

Dex,

Yes very much, I have a list of questions that I am sure will annoy our Doctor, but don't think I care and honestly the Doctor will be happy to answer my questions. She has been absolutely wonderful, she actually sat with me and my wife one day in her office for almost an hour talking about Crohns-treatment-paths--etc...just wish I could remember, think we were still in shock at that point....

Talk to you later,
Scott K

Dexky said:

This is a very informative thread Scott! I tip my hat to the mothers and the nurses!

Click to expand...

Really sorry Scott I really hope answers come soon and your daughter can have the great Christmas she deserves. Oh! Which reminds me when I was young my mom always used to tell me Santa is watching. She used to tell me birds or animals were his helpers and so she used to point them out when she wanted me to do something. Could be appropriate for the season? Best Ive got sorry. Best of luck and best wishes to you and your family.

Our city of about 300,000 people has 2 ped GI's so I get how yours is busy! We feel lucky to have them at all, otherwise we'd be traveling to U of M. The vitamin D shouldn't bug her to take b/c its literally a pinprick size that you put on your finger and then under her tongue... that way, she'd at least not be d defiicient on top of all your other worries, but I have 2 other kids and I know how that age is

Marilena also just kind of naturally weaned herself off of dairy foods, b/c in hindsight, they must have been bugging her... I can get her to take Gogurts if I freeze them like popsicles! They don't seem to bug her tummy like straight milk or cheese.

I keep a list of questions and write down everything, b/c I simply have to brain and can't remember what the dr's and nurses say 10 seconds later. I constantly update my "Crohn's notes" on my computer to try not to lose my mind with all the info

I think all of you Crohns parents are doing such a good job coping with this disease for your children. Taking the time to find out what it all means, and truly doing everything you can to help them.. anyone want to adopt me? (LOL)

I'll adopt you Nica, ifyou have a big trust fund Those pediasure shakes are costly!

We are huge proponents of bribery. I paid my son $1 for every protein shake that he finished- 3 per day. He was in pain and he struggled to down it for the money. I was willing to try anything to get some weight back on him or give his body more calories to burn. He started cooperating better when we gave him a hot rice bag to hold on his belly after eating to help with the pain. Try the rice bag and see if it helps your daughter.

CRP was above 6 and Sed was around 50 when he was diagnosed. They both got worse and are now in the normal range. We skipped remicade and started on Humira. My son was depressed and terrified of the hospital and the infusion clinic. Managed to get it approved by insurance and hope they'll approve the script again for next year.

regarding the cancer risk in children. It's there, but I look at the statistics of having surgery without remission (I'm going by memory neighborhood 60% for surgery vs the 6 in 10,000 that develop a lymphoma). That's the the bit that keeps my sanity.

Hi everyone,

Update, I guess the dosage splitting has been key, we had our 2nd night of NO vomitting going for 3 tonight.

We still haven't heard from Doctor, but now not to worried that its calmed down, but still kind of frustrating...either way...

Crazy--- actually had a good talk with her tonight about "Crohns" and as good as it can go with a six year old , I tried to explain about the medicine and how that is helping her and the vitamins helping her get strong and grow fast and feel better too...so we will see.

She had a huge glass of milk at dinner, regular milk too, so a little worried how that will go, still not sure if that is much of an issue, but she normally isn't a big dairy person so I am going to look into the Vitamin D thing you said Jamie.

Crazy, thanks for the words--it was a very rough week last week and I am sure you all could tell LOL, but seem to be getting better as she does, which I am sure everyone will attest to it pretty typical.

I pray we are onto something here and hope it continues...talk to you all soon!!!

Haha well there we go best of luck and hope the success keeps coming.

Scott, I can certainly relate to the communication frustration. We gave up on phone calls and just wait patiently for e-mail. We haven't faced any serious issues for a while though.

Is there a fair bit of it isn't fair that the twin sib doesn't have to take the yucky stuff? I wonder if having the sister? take some benign supplements at med time might help Jillian not feel so put out?

Yes somewhat, she definitely sees it and wonders why can't I be doing it, its one of the other tough parts of this, giving Jillian so much attention with all this and still trying to make sure the other twin and the 3 yr old get attention and just as much time and love....

Our GI appointment was yesterday. Our son isn't responding to Azathioprine, and now the prednisone doesn't work either. He's flaring so badly and pain is getting worse. (Only when he is going to the bathroom...he's ok in between) but the number of trips are increasing. Our doc said his recent labs could warrant a hospital stay. He's lost 5 pounds in a week. They talked us in to trying Remicade. I'm so scared. I hope we are making a smart decision. They kept stressing, "He's going to feel soooo much better". He's a crohn's kid that just has a lot of inflammation and malabsorbtion issues. He's way way under weight and short stature. And then in lots of pain. He looks so terrible right now as he just had flu. (I think due to Azathioprine knocking his immune system and him being so malnourished anyway).
Does anyone here have their child on Remicade. I've seen some horror stories in some of the threads written by adults. Our GI doc seems adamant that this will fix our 10 yr old.

Brian's Mom - Our support group leader's daughter has been on Remicade and in remission for 5+ years now. They talk about life before Remicade and after. Jennifer is 19 and a freshman in college and she says it is the best decision she and her family ever made. She is a thriving, symptom free, beautiful young lady. It has made all the difference in the world.

I'm sure there are some parents of 'Remicade kids' on here that will respond to you. But I wanted you to know there are big success stories out there. Remicade was the initial thought the Ped GI had for our daughter but because of a neuro problem, she was not a candidate. I will say though that had she been a candidate and not responded to 6MP, I would have gone that route in a heartbeat.

Thinking & praying for you both -

Claire's Mom

Brian's Mom My ten year old is on Humira another anti TNF. Similar concerns to Remicade but different moAB

First shot (loading dose) his color got better and he was able to move around like a child. No naps on couch or getting picked up at school.
Within a month he was gaining weight and able to go to the bathroom without miralax. Within two months he started growing.
Within three months he's starting to sneak food since it doesn't hurt to eat anymore.
Within 6 months he has a pot belly and has gained all of the weight back that he lost (40+ lbs)

It's made a world of difference in our house. I worry about the side effects, but we were at a point similar to yours and had to jump to the next medication.

Brian's mom,
So sorry to hear that your son isn't doing well. Its hard to watch, I know. We have no exp with Remicade, but know that you are in my thoughts!

Scott: We actually give the Vitamin D and the omega 3 to all of our kids. so that Marilena doesn't have to feel completely alone with all the meds. And as expensive as it has gotten, we let the 7 yr old and the 3 yr old drink the pediasure shakes too, b/c it just got too hard to keep saying that sissy can have whatever she wants and you guys can't! I know its hard to balance. I feel for you.

AZMOM, MAMI, and Zoodles,
thank you so much for your response and prayers. This forum has been a great resource for me. I know I'm not alone! It's wonderful to hear some positive stuff about Remicade. Zoodles, you mentioned how it made a world of difference in your house... made me think, you're right...we're really not 'living life' right now...just thinking about and dealing with crohns. Doc's are trying to set up his first infusion for tomorrow or maybe early next week. I'll keep you posted.

I really feel for all you parents out there and these desicions.

Brian'smom I can add to the success stories of remicade. Abaolutely changed my life. Id been flaring since april when imuran/aza stopped working and entered near remission almost immediately. Im expecting full remission very soon as I wrote my last exam today.

Best of luck to you all!

Crazycanuck,
Do you think it matters that Brian never responded to Azathioprine? I'm staying hopeful that he responds to the Remicade. Our doctor seems confident he will. I'm curious if you still have little flares while being on Rem, or they stop altogether. I just want to watch my son grow! He's 10 and is 4'3" and weighed 47 lbs in May. After months of pushing calories down him(And first round of prednisone) he went up to 55, but after he got sick, he's down to 51. For his age, he should be 65 to 70lbs...and taller.

God you know Im not sure. Aza worked great for me for 2 months then family troubles and exams hit I entered major flare and well 7 months or so later of insurance battles and provincial funding bs I started remicade and it has changed my life. Everybody is so different though which is really unfortunate but I really do wish the best for him.

Oh and by the way when that flare hit I weighed 155lbs, I dropped to 132 in a matter of weeks and stayed there till remicade. 6 days after infusion 1 I left for mexico and in 1 week there of alcohol (which usually makes me quite sick) and buffet I gained 11lbs. A lot of people dont see results that quick but as in my case it is possible, anything is possible.

Good luck!

Oh my gosh!! You poor soul! I don't have advice to offer. I think we have all been this frustrated, but I feel like the pain you have is worse--being the parent. I will say a prayer (if its okay) for you and your whole family. I hope some goodness and relief comes your way, Peace--Sue

Brian's Mom,

I am still praying for you as well, I hope things get better for your son soon.

My Jillian is a different person then she was at the end of November, she has her appetite back, color, everything. Its still frustrating because we don't know what caused it, the main fix "Seems" to be the splitting of the dosage for imuran, but who knows, maybe she was in a bad flare, I guess this kind of stuff is par for the course.

Even her poops are getting back to "Her" normal

I still am fearful, although I have not cried since she stopped throwing up, about stories like Brians'Mom is going thru, you mentioned that my thread made you cry, well when I read your messages and what you are going thru, it almost makes me cry too, for any kid, yours, mine, or anyone's just sucks. And scares the crap out of me on what my daughter could go thru.

I really hope REMI will work for you and give him and you some relief.

Take care,

And thanks to everyone that has listened and given advice.
Scott K

I am glad she is doing so much better. Thats kinda par for the course with Crohn's times when you are "normal" and times that are really bad. Hopefully she stays better!

Yeah glad she is doing so much better thats great

Brian had his first infusion yesterday. It was tense, mostly because since May he's been stuck and prodded a lot, but after the IV was in, all went good. We talked to him an hour in, "What can we do next time to make this go smoother"? He had input, like; "keep my eyes shut, not wear a hoodie, sit in the recliner by myself" etc. We were getting him ready for "next time". Letting him be in control of this. I don't think he felt the stick, just saw some blood and freaked. Next time that won't happen, I'm sure. He was also anxious about what it would feel like having the medicine go in.
WELL... Last night he still had "#5" cramps, which were pretty bad. (Probably a #10 for me!) This morning he didn't have to poop, and he went the whole school day without going. At 4pm he went. I didn't expect things to be better yet, but I heard him cheer, "I love this!!!!" He said his cramps were down to a "#1 or #2"!! The smile on his face was WONDERFUL! In almost a year he sees hope! Its only been 24 hours and he feels a little better. I hope we continue like this. Later he had some more...Maybe a #4, ...one day at a time...
Crazycanuck, you said it was like a miracle for you! Maybe we'll be saying that soon!
Brian said, "I'm glad I did the Remicade". Next IV will be easier I bet...I hope

Scott, I'm glad Jillian is feeling better. She's so young, that's sooo good that the meds are working for her. I know parents who have kids that do well for a long time on meds. I think science is busy working on this. My GI just got back from seminar in Florida. Hopefully cure is in near future.

So glad Jillian is feeling better! Here's to a long time of that!!!!!

Brians Mom that is great news thats how fast I saw results too and Ive only been 3 times now but I assure you it gets easier each time. Im extremely needle phobic but with each tine it gets easier and knowing its going to help makes the fear easier to deal with. Also as a tip I wear a t-shirt when I sit down and then layer with a hoodie and blanket on me if Im cold because whatever your wearing is staying on haha. Also because its built up now dont be discouraged if a few days before next infusion he is starting to get sicker again as that happened to me. Once I went again back to healthy again. Anyway good luck and thats great news.

Well good news about Jillian :ysmile: and Brian :thumleft:! I'm so glad I logged in..... Love to both your families - you deserve a great Christmas and especially the kids deserve it too!

Claire's Mom:rosette1:

Claire is trying to read over my shoulder and says you both need a princess. :shantel:

Yay for Jillian and Brian! I am so happy to read this!

Brian's mom, your post brought tears to my eyes - I hope to see my son smile like that and be happy again sometime soon.

Have a wonderful holiday, both of you!

Antsmommy it will happen Im sure of it. Keep going and you'll get there soon!

It is very uplifting to log on and read some good news about your kids!! I pray the positive updates keep coming guys. All the best to you and them!!

Kelly, with your determination to help Ant, they will find the right answers for him soon. We'll be hearing good things from you too!!