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Thanks for the update Jm! :) It is so fab to hear that Jack is feeling better and I have everything crossed that it stays that way! Good luck! :ghug:

Dusty. xxx
 
Had a long chat with Jack's GI last night when he called to check on him. Jack is feeling better, symptoms have decreased but still no appetite.
We had a long chat about growth/puberty as nothing has changed since March. He grew an inch between Feb/Mar when he was on supplemental EN but nothing since then. No signs of puberty so we will keep doing supplemental EN, added the Pentasa and if no change by December when we go back discuss options. His younger brother (12 1/2) has caught up to him in height again and the way he is eating I think we are going to get a couple more. I think and GI agrees we need to figure out why.
 
Thinking of you Jm and hoping you have solid answers and positive outcomes for Jack very soon. :ghug:

Dusty. xxx
 
ARGHHH!!! Off Pred for a week, 3rd day of stomach pain! I write a post on Tuesday morning, come home and he tells me his stomach was bothering him all day. I was hoping it was just a bad day. Last night he came in about 10:00 to ask for the heating pad with tears in his eyes. Stomach was really hurting. Was in a lot of pain this morning.

Spent most of yesterday at ER with my 86 year old grandma who fell out of bed and looks like somebody beat her with a stick, luckily no broken bones but they did a CT scan of her head as her entire face is swollen and black and blue.

Guess I will be making a call to the GI today to see what we should do. :(
 
Sorry to hear the symptoms are coming back. Do you think that the appt. will now be moved up? It does sound more like a flare with the symptoms returning after the tapering of pred. Things are not going great here but I'm not sure what to make of it, either. I'm going to update my thread and see if what you guys think.

I do think it is odd the number of parents who are posting there kids are having issues, maybe something to be said for the seasons change? I don't know, this disease befuddles me!

I hope you can get some answers quickly and that the pain soon subsides! Hugs and Support!
 
Aww, Jacqui, sorry his symptoms are coming back. :ymad: Poor guy, breaks my heart when these kids have to deal with this stuff repeatedly. :voodoo: :voodoo:

I'm sure the GI will move up the apptmt - he can't leave things as they are until December!

Still hoping it'll simply pass though... :ghug:
 
Just got off the phone with GI, plan is increase Pentasa to 3000mg a day either 3 pills am and pm unless he starts having side effects (headaches, nausea) then try 2 pills 3 time a day and either full course of prednisone or EEN.
I have a feeling Jack is going to want EEN he was just saying this morning, he doesn't want to do prednisone. So 8-9 cans a day for 4 weeks and assess.
On the table for discussion - moving back to Azathioprine. Labs were not horrible on it but no where near as good as they were with LDN prior to all this. So is LDN losing its effectiveness with him? Just not sure.

Also talked about moving up appt to 3-4 weeks to unless he is feeling absolutely fabulous at the point (I hope so)
 
Sounds like the GI has a good plan moving forward. Maybe the increased dose of Pentasa and the added treatment of EEN will get things back under control and have him feeling fabulous!!
 
I'm sorry, Jacqui. I hope EEN brings some relief.

I'm sure you've probably posted this somewhere... are you trying to avoid or postpone the biologics? Is that why that hasn't been discussed?

And his pain, is it more like cramping or more like sharp? I just don't see how these kids manage. Breaks my heart. And they just soldier on...
 
More like cramping, or spasms, especially after eating. We have discussed biologics but he is not good but he is not BAD ykwim. He hasn't missed any school it's more like he is almost there but not quite. We are hoping that whatever it was with the antibiotics and c-diff that seemed to have thrown everything off we can get the inflammation under control and hopefully the Pentasa and the LDN will keep it there.
Although neither one of us is actually really hopeful about the Pentasa, his dad was on it for quite some time and it really did nothing for him. He ended up in the hospital twice with abscesses while on it.
So I guess we may be just putting off the inevitable but feel we have to try all the little tweaks first in order to justify that yes that is what we need to do because what if the little tweaks work and we get another year or 5 years or more. I don't know if I'm making any sense, to tell you the truth this week has been awful and really all I want to do is crawl under a blanket and hide.
 
I agree with Mehita Jm...it makes perfect sense. :ghug:

Here's to tweaks that last until a cure! and hoping more than anything that you are able to nip this in the bud Jm.

In my thoughts. :heart:

Dusty. xxx
 
I completely understand.:hug:
I've already thought up a few different tweaks.
Now just to get the docs to agree.


HUGS
 
More hugs... between Jack and your grandmother, you have had a tough week. :ghug:

I hope Jack stays on board for the EEN and that it lessens the inflammation straight away! How was he today/tonight? Thinking of you... :ghug:
 
Thanks Tess he is doing okay, doing his homework and sucking on a jolly rancher. He is totally on board as he absolutely does not want to do pred. Ask again in a few days it may be a different story. :eek2:
 
I so hope it does the job! Such a huge challenge, I really don't know how these kids do it! :ghug:
 
Thanks for checking. He is doing pretty well, feeling better as everything smells SO GOOD!! and he wants to eat which as you all know is a big change for him. I think I could get him to eat anything now. Weight is down to 91 lbs but seems to be holding steady there.

He has gotten 2 huge pimples this last week :eek: never had one before so I don't know whether to attribute to the EEN or is he finally showing some minor signs of puberty! Which lead to a big discussion on properly washing your face.

Fatigue seems to be back to normal teenage fatigue. He is almost impossible to wake up but is not dragging the rest of the time. The smoke alarm went off last night at 3am for some odd reason. The rest of us were up and out of bed checking everything. He slept through the entire thing.

I'm anxious for it to be over but I'm afraid to feed him normal food again, ykwim. He hung out with a friend this weekend and I was so proud he was very responsible and packed himself a cooler of shakes to take with him.
 
So glad to hear things are improving and that he is doing so awesome with EN. Oh I hate seeing the fatigue, I happy he is starting to get over that, it is so hard to watch. It sounds awesome that he has been out and about with friends!

I'm hoping that food introduction goes smoothly and wonderfully for him! How much longer until EN is ended?
 
We will be 3 weeks on Thursday so 3 to go! GI said 6-8 weeks so based on how he is doing now I'm thinking we will add chicken broth and that kind of stuff after 6 weeks instead of going all 8 weeks on EEN.
So broths, jello, etc week 7 with still majority shakes meeting nutritional needs
Chicken, white rice, applesauce etc week 8 and cut the shakes some more.
He has written a food wish list instead of a Christmas list and placed it on the fridge - Of course topping the list is Fried Chicken, Pizza and McDonalds.
 
Haha!! Love the food wish list!!! That sounds like a great food reintroduction plan. C was really impressed when I told him that Jack was doing EEN and drinking the shakes, he said "He's the man for drinking them!" and to send his support.
 
Sorry I have not been around the last few days, I have been at the hospital with my mother. Apparently she has gall stones which have blocked the bile duct and caused pancreatitis and her liver to become inflamed. Pancreas levels were at 20,000 yesterday apparently normal is around 300.
Won't do surgery to remove gall bladder until the pancreas levels are down. Heading back to the hospital in a little bit to speak to surgeon.
Jack is doing well, it will be 4 weeks on Thursday! Although if I'm not around he will not drink all his shakes ARGHHH. Hubby just doesn't think about it and Jack needs reminding or it will be 4-5 hours before he gives it a thought. I came home the other day about 5 and he had 2 shakes up to that point!
 
I haven't been around much lately too. But, I'm so glad Jack's doing so well!!! I really hope you have no problem reintroducing food!!!! And, love that food wish list! Gotta admit... those are some of my favourites too! :blush:

Sorry to hear about your mom! Hope she's comfortable and they can move ahead with treatment (surgery?) soon. :ghug:
 
Sorry to hear about your mom. My mom has just been in hospital with a kidney stone and she was really not well. Hope your mom recovers soon. Glad Jack is doing good.
 
I got so angry last night at the surgical nurse when she came in. Surgeon never came and she kept telling us he had. I asked how low did her lipase levels need to be before they would perform surgery did they need to be at normal levels (300) or would they do the procedure if they were slightly elevated. She looked at me and in a very snotty way asked "Are you a nurse? Her levels are at 3300, we're not doing surgery when they are that high." Seriously! Not what I asked... Still haven't talked to surgeon!
 
OMG!!! What a b...h! I hope you were able to come back with some snarky remark!!! (But, if you're like me... the great comments you 'should have' said come 3 hours later! :ybatty:)

Hope you get to speak to the surgeon soon!
 
One Month on EEN!!! So proud. We are going to the Macklemore & Ryan Lewis concert tonight. I called the venue about bringing in his shakes. They were awesome. Head of security is going to meet us at the security entrance and let us in with them. They were pretty cool said we don't want him going hungry. Got his report card today and had parent teacher conferences. All A's except one B in Conceptual Physics. His teachers couldn't have said enough nice things about him they were all in awe of how happy and confident he is with all that has been going on with his health since school started.

Even got to talk to the baseball coach who happens to be his PE teacher as well and he was commenting on how glad he was to have Jack in his class and see what a good athlete he is and what a leader he is since there are 41 kids trying out for the freshman/sophomore baseball team, he is glad he has more to judge him on then just the 2 days of assessments that will happen in January.
 
That's Our Boy!!!!!! :applause::applause::applause:

Going to you tube Mackelmore and Ryan Lewis now.....
 
5 weeks!! But he is down to 88 lbs, that is a 10 pound drop from end of June! Says he feels fine otherwise. Talked to GI yesterday and he says go ahead and add food back but keep most of calories coming from shakes and if he does not put the weight back "we need to have a serious discussion about disease activity and treatment" - whatever that means...
 
Yay, that he gets to start adding back in food!! I hope he gains some weight with eating!
 
Thanks, he was very excited to have some stewed chicken and rice for breakfast but didn't eat much before he was full. He did also have a Peptide shake this morning after.
He just texted me from school to ask if he could have Mountain Dew - Uh NO! I guess he at least asked before just drinking it.
 
February and all good/clean, blood tests all normal. Did supplemental EN at that point to put some weight on as he was 1st percentile (5'1" and 77lbs) got up to was at 98lbs in April appt. and declared "in remission". Started having symptoms in August (weight at 95). FC done in September showed inflammation but blood test were normal or just slightly elevated from February labs but still within normal ranges/levels (weight at 93). Did 5 day burst of prednisone thinking we could knock inflammation down but was still having symptoms so EEN instead of full course of pred. Pain/cramping is gone. Eczema still present on his arms in the inside bend of his elbows, one BM a day, all liquid (I'm assuming from the shakes) and he is in the bathroom for 20-30 minutes. Next scheduled appt is for Dec. 9th. and had planned to repeat labs at that point.
I have to remind him to drink a shake every 2 hours as he just doesn't feel hungry. I think he is still the same height he was last December although he may have been 5' at that point - so 1" for a 13-14 year old. I know he has not grown since April since nursed commented at appt. in September he was the exact same height.
 
Hugs sorry to hear things have not turned around...
Can they get you in sooner or check blood sooner than dec?
Only ask since he seems to be hanging on and not growing or thriving
Then add in his age ....only so mAny griwing years..
I know you are trying to avoid changing meds ..
But is your Gi willing to discuss other treatments .

For a comparison DS is 9 and is at the 75% for weight (78 lbs) and 66% height
(4'7") after not growing or gaining for very long time

Good luck
 
I think that is just what he is thinking that we are still in that "failure to thrive" but figures the next couple of weeks as we add in food with out lowering shake amount that he will hopefully gain weight.
But I agree about getting blood checked sooner, I think we already have an order at the lab for his Dec. appt. - He usually likes them done before appt. so we can discuss results. I'm wondering about another FC though. Guess I better call on Monday.
 
When Stephen was on exclusive for six weeks, he gained only 10 lbs... once we added back food (but kept supplemental EN at 1500 cal/day x 5 days/wk), he gained almost another 20 over the next six weeks. You'll, hopefully, notice a bigger gain in the coming weeks. :ghug:
 
In a state of flux. We have added food back in and kept to 8 shakes a day. He has gained a pound so hoping that will continue to climb. He is still never hungry and I have to constantly nag him to eat and/or have a shake. No visible symptoms so I'm hopeful we can continue improving. We do labs last week of Nov/Dec 1st for appt. on Dec. 9.
I'm still worried about lack of growth he is same height as Dec. last year so does that mean we are missing something? I'm willing to watch weight over next couple of weeks to see if it continues to improve but #1 on my list for GI is his lack of growth. Do you think I should ask for referral to endocrinologist? He was 4'10" at 10 years old in 2/2010 when he was diagnosed and is know 5'1" nearly 4 years later (a total of 3" just does not seem right for that age range and time frame).

Mom is continuing to improve. She and Jack are pretty much on the same diet currently. After a week in the hospital they were able to do the surgery and remove her gall bladder. Lipase was at 600 and they figured they could not wait for it to go any lower. She will have her levels retested this week and if they are all normal she is good to go.
 
I don't think it would hurt to see an Endo. Our GI said that 14 is the magic age in his book. If boys haven't started puberty or aren't growing at this age, then it's a concern that needs investigating. And I vaguely remember him saying something about growth hormones... something about them being pointless for IBD kids and that's why he felt there was nothing that an Endo could do for us. Just his opinion that I took with a grain of salt. If DS doesn't pick up steam soon, we'll be seeing an Endo as well.

So glad your mom is on the road to recovery. One less ball in the air maybe?
 
Normal kids before puberty should be averaging 2" a year - not 3"total in 4 years.
After 12 even more upwards of 4 inches per year so ...
Please call an endo ASAP .

The body holds nutrients for heart to beat etc... First
It holds the second set of nutrients for brain development and other organs
Third set goes to growth / weight gain

So if your are not growing the odds of doing damage to other things increases greatly.
It is not a matter of just being taller.

Kids that are Ibd healthy should stay on their growth/weight curve from age two .

http://www.medscape.org/viewarticle/432565_1


Hugs
 
Looked it up today, one office in Boise and only takes patients by referral so will talk to GI about referral. Thanks MLP that is kind of what I was thinking. Given at 2 he was 90th percentile in height and 75 in weight. He has supposedly been in remission for a lot of that time in that he was having no other symptoms but lack of growth and it was just always said well he'll grow any time now.
His brother is averaging about 3 inches a year. They are currently the same height, his brother is 12.
 
Ryan's height/weight was at a stand still at 14 also. He did have some inflammation going on then. He finally took a height growth spurt at 15, growing about 1/4 inch every 6 weeks or so. He is still growing in height, as for weight...that ones still a struggle.

Hooray on the great grades! Amazing kid to handle studies in the midst of all of this!
 
Just talked to GI and before I could even say it, he suggested endocrinologist. He is sending referral over today.
 
I hope you get a quick appt from the referral! Sounds like things are going in the right direction!
 
Just got an email from the GI saying he is just put in lab orders for some general screening endocrinology labs for us to do, they may order more but this will give them a head start. Any idea what they are? And he wants another FC.
His school's varsity football team is so far undefeated and they are playing in the semi-finals today 3 1/2 hours away. Jack is taking the Pep bus after school to the game which starts at 8:30. They are expecting to be home at 3 am! I'm glad he is feeling well enough to go but I'm feeling sorry for myself because once I get up a 2:45 to go get him, I'm pretty sure I will not be going back to bed :(
 
Sorry 14 pages of labs and their no categorized but on her summery from the Mayo Endo it names a lab test called Fractionated acylcarnitine.

Sorry
 
Thanks farmwife. I just have no idea what is involved other then a bone age scan.
It's 10am, how long should I wait before calling the endo? Now that the plan is in motion I want to get a move on. (Not impatient or anything? Am I?)
 
My younger daughter is seen by an endo but I can't be of assistance with labs as I don't watch those. I do however think a bone age hand x ray before going is also a good idea. This way endo will have lab results and x ray and you will be ahead and ready for action.
 
Hey Jm,

I imagine an endocrinologist would do as you have said bone scans, plus bloods for things like growth hormone and thyroid function. They also look at chromosome disorders that cause growth failure.

Good luck with the appointment!

Dusty. xxx
 
Went for labs yesterday, 12 vials of blood and Jack says the plebotomist was not very good and he has a huge bruise on his arm to prove it. Normal labs for GI done, CBC, ESR, CRP, Vitamin D plus general endocrine screenings for endo appt. GI ordered to give Endo a head start. 17-hydroxprogeserone, Androstenedione, DHEA Sulfate IGF Binding Protein 3 and Growth Hormone (HGH) and we brought home a hat and cup for FC. He is fairly constipated and had one little nugget yesterday, I didn't think it was enough for test so I didn't bother with it and he has not gone today. Hopefully after big Thanksgiving feast he will be ready :)
Feeling good otherwise no pain eating pretty much everything he was eating before EEN just in smaller amounts and drinking 4-5 shakes a day still. Small amount of eczema on inner elbow both sides. Should get results back next week and GI appt on the 9th. If I could go by just the way he is feeling my guess is they will all be within normal levels. (fingers crossed)
 
Hi JM!
Our sons are about the same age, and my son has not grown in about a year and a half. According to our new GI this is a crucial time for LJ to grow and he needs to be gaining weight for that to happen. When we started seeing him LJ had not lost weight, but had not been gaining either & he said that in itself was considered failure to thrive (which no doctor had ever said to us before) It was just another thing to feel bad about...I'm the mom letting my kid walk around with a failure to thrive:(
Anyway, I'm glad you are getting Jack to the endo & I'm curious what their take will be on the situation & what is the real time frame for growth in boys.
Have a Happy Thanksgiving!
Ginger
 
Yes Gmama that is where we are at we had the failure to thrive label last February and he was put on supplemental EN and gained weight as far as height or any sign of puberty - nada. As you say this is a crucial time for growth and most kids this age seem to grow 3-4" a year, Jack has grown 3-4" in the last 4 years. Endo may say we just need to be patient but we need to figure out if there is something that is causing lack of growth. I'm not very tall 5'4.5" but his dad is 6'1" and my nephew who is the same age just hit 5'6" (Jack was always taller then him) the same height as my brother and his wife is only 5'3". Jack's younger brother (12yo) is the same height and has grown 3" in the last year and looks like he is about ready to take off. His feet and hands have gotten huge. He is wearing a size 9.5 (dad's a 10.5) and he ate 1/2 a pan of lasagna last night where Jack eat one small piece.
I'm really nervous about the endo that either he is going to tell us nothing is wrong and leave us with no answers about lack of growth or that something is seriously wrong and he has some other disease.
 
JM I'll be praying that you get some good solid advice from the endo that will help Jack soar! :)
Chances are Jack's lack of growth is just the darn wretched evil Crohn's:(
I hate how there is no clear cut anything with this disease, and even when I think I know where we are between symptoms, weight gain or loss and blood work, then in a week something changes and everything that I was positive about is literally flushed down the toilet!:lol:
 
I can say that DS didn't grow when he was en even though he gained weight until he was on the right meds .
Hope your endo visit is fruitful
 
Thought I'd chime in given that I have some expertise in the area of growth.

Forgive me if you have already answered this... Does Jack have any signs of puberty? Slow growth relative to peers can occur secondary to later than normal puberty. Later puberty is often familial* but puberty can also be delayed with chronic illness. Crohn's with ongoing inflammation and/or low BMI are definitely reasons for slow growth and delayed puberty. Sometimes slow growth or delayed puberty are the presenting symptoms of Crohn's which I take to mean that Crohn's w/o a lot of gi symptoms can still be associated with poor growth.

*(Is there a history of later than normal puberty in you (later menarche) or dad (late growth spurt)?)

Over the 4 years with 2 inches of growth, was Jack primarily normal weight or underweight? in remission or with inflammation?

Was Jack on steroids for some of these 4 years? If so, how long? Steroids certainly can slow growth if given over a long enough period of time.

The usual w/u for short stature, should be an evaluation of the growth chart, hx, physical exam, bone age of wrist, thyroid function tests, IGF-1, and other tests to r/o silent organ dysfunction/chronic illness (CBC, ESR, lfts, bun/cr, urinalysis).

I am somewhat confused by the labs that were ordered. Some (the adrenal hormones androstenedione, dheas and 17OH progesterone) seem extraneous. A single GH sample is usually not helpful since GH is secreted at night in pulses and usually low in the day. IGF-1 is usually used to screen GH def, but please note it is also low in thin/ nutritionally depleted children.
 
Thanks xmdmom. I'll try and answer your questions.

Does Jack have any signs of puberty?
Click to expand...
None, he could not shower for 3 days and he doesn't even stink (I still make him shower every day but there have been a few long weekends).

*(Is there a history of later than normal puberty in you (later menarche) or dad (late growth spurt)?)
Click to expand...

I was 12/13 at first menses summer between 7th/8th grade and I have a summer birthday. Dad was 11ish and his mother confirmed that. He was tall in 9th grade, one of the tallest in his class. He is 6'1" now.

Over the 4 years with 2 inches of growth, was Jack primarily normal weight or underweight? in remission or with inflammation?
Click to expand...

Most definitely underweight until about February. He was 77lbs since about 6th grade and in remission for most of that time, at least no inflammation showing on labs. His GI was always he'll grow now that we have the crohn's under control. It just never seemed to happen. So before diagnosis he was in 80th percentile for height and about 50th for weight. He just seems to keep falling further down that growth chart. I think he is about 10th or below on height now.
He has been healthy BMI since Feb/March 2013 and has not grown at all.

Was Jack on steroids for some of these 4 years? If so, how long? Steroids certainly can slow growth if given over a long enough period of time.
Click to expand...

Jack was on prednisone at diagnosis (age 10) for I think 4-5 months including weaning off and for a 5 day burst in August.

I am somewhat confused by the labs that were ordered. Some (the adrenal hormones androstenedione, dheas and 17OH progesterone) seem extraneous. A single GH sample is usually not helpful since GH is secreted at night in pulses and usually low in the day. IGF-1 is usually used to screen GH def, but please note it is also low in thin/ nutritionally depleted children
Click to expand...
.

I wasn't sure about any of these and the GI ordered them as a head start for the Endo, so we have not had the Endo order any tests as of yet so I imagine more will come after appt, unless these tell him what he needs to know. I've tried to research some of them but couldn't seem to come up with any good answers.
 
I would guess that the low weight, Crohn's inflammation and 5 months of steroids have contributed to the poor growth and delay in puberty. It makes sense to see an endocrinologist to make sure there isn't anything else. You would expect growth to improve when the inflammation and weight got better.

How long has he been on LDN? I don't think anyone knows the effect of LDN on growth or puberty. The studies were too short to evaluate these possible effects.

saw this article in rats
http://www.sciencedirect.com/science/article/pii/0024320583906392
 
He has been on LDN of 18 months, thanks for the article I have never seen that one before. I will repost in LDN section as there have been a couple people just recently who were inquiring about weight gain/loss on LDN.
I didn't think 4-5 months of steriods almost 4 years ago would still effect him?
His GI has already suggested if Endo finds nothing that we move to remicade as he has seen good growth in his other patients on it. I told him whatevever we need to do at this point we are open to
 
The 4-5 months of steroids most likely impaired growth during that period of time and if health and weight weren't optimal afterwards, there may not have been any catch up growth. But it sounds like the steroids have been only a minor contributor to the growth issue. Good luck sorting things out. At 5' 1" and no signs of puberty, he most likely has good growth potential.
 
Hi J, just checking in on how you and Jack are doing. We started with endo, and didn't find anything, but they are the ones who sent us to GI where the real answers were. Let us know what becomes of it.
 
We have GI appt on Monday. Did labs and FC last week. Not expecting FC back by Monday and think labs will be fine they usually are. Weight is holding steady at 93lbs. He is still drinking 4-5 shakes a day. If he drinks any less then that the weight starts dropping. He is feeling good otherwise.
He's got a head cold now and end of semester tests in a week so I hope that doesn't cause any problems.
 
So not very happy :( Was sure that everything was going to come back normal. FC in Sept. was 293 up from normal base line one of 90 so while not significantly higher this time 353 it is still going in the wrong direction. GI believes there is simmering inflammation in small intestine or maybe some stricturing which could account for lack of appetite and growth. MRI scheduled for Friday. For now we are adding Imuran/alipurinol back in the mix. Stopping the Pentasa. He will continue on LDN for the time being since Imuran needs time to work. Although results from MRI could throw everything out the window based on if is seen there or not. Oh but he has grown about an 1/8th of an inch.
He gave me copies from the blood tests that were ran for endo, said they looked okay to him but he did not know anything about it
17-OH-Progesterone was at the minimum level of 16 for normal range of 16-283; Androstenedione was low 21 for normal range of 22-225.
So we'll just have to wait till endo to find out more on that I guess.
 
Hugs sorry it is increasing.

I may have missed it but why back to Imuran if you didn't see growth the first time on it ?
I thought you had said remi - maybe I am getting confused .
It does happen easily these days .
 
Yes we thought Remi as well but GI says he's not "bad enough" for remi - I'm a little confused myself since I'm beginning to wonder about inflammation all along and how long it has been going on since we've only recently done FC and blood tests have never shown anything as he says he is not surprised at that since inflammation is not very high... We go back in 2 months and another FC at that time unless everything changes with results from MRI.
I guess I don't really know why we are doing Imuran again I was a little shell shocked by the FC as I really expected it to be normal as Jack has been feeling well and was not prepared for a medicine discussion until possibly after endo appt. Who knows maybe the combo of LDN and Imuran will work wonders. I'm a little confused. I think he just doesn't want to go there until we have no other options. He did say we need to see results quick since Jack is in that puberty window.
 
Just my mommy two cents ( not a doc).
We got the he isn't bad enough for remicade speech as well.
However with DS he wasn't good enough on 6-mp so Gi tried Mtx which turned out tone a disaster . I know our Rheumo was the push for remicade for DS otherwise I think he would have been back on 6-mp. It was that miracle drug.
As far as saving it - just went to a ccfa program for Ibd parents which showed surgery is 10x less likely for an Ibd kid if remicade is used In the first three months of dx.
They know it works well and changes the disease course .
They also know what will likely happen with the normal drugs since that has been proven to not change the disease course kwim.
Is your gi the type who will discuss his reasoning why especially if a med failed before .
I know I have asked more than a few times when we make a med change so everyone is on the same page.
 
I honestly think we are putting off the inevitable and will be on remicade.
He absolutely will talk about his reasoning in fact he likes to talk it out to himself in the appt.
Reasoning blood test were good on Imuran (yes but we never did FC so maybe there was the same level of inflammation going on then and that is why we did not have growth) which is why we are doing another FC in 2 months. His words were he's not really bad; inflammation is not very high only slightly elevated and symptoms are not present (we have never had hospital stay, surgery, etc) so he would rather keep it in his back pocket. But growth is going to be watched very closely and checked every 2 months. I think he is hoping Endo will be able to shed some light on lack of growth and it is not Crohn's related. (I think it is but I can wait a couple of more weeks until we see Endo)
So after having a little more time to think it over I'm thinking I will give until Feb and if there is no change I will say Remi. I guess I always thought he would tell me when/if it was time to go there but I think I'm going to have to go with my gut at that point and say I think we need to try. Goodness I don't know if I'm even making any sense..
 
You are making sense .
Its a big step and like you we thought gi would go there straight away after mentioning it to us .
We also got the dance for two
Months .
I can see the GIs point because now you take my kiddo
Who is nine and has little drug options left .... But is growing and last scope was clean as in all normal biopsies and FC was 82 so....it's always a risk
And I am glad we took it ( no hospital stays surgeries abscessed fistula etc for DS either )
No thickening of the bowel or scar tissue
And I would like to keep it that way thank you very much
 
I think you know our story... simmering, low level inflammation for a long time. Never impressive enough to catch anyone's attention until it was too late. Then boom: surgery, flare, abscess, fistula all in one year's time. Putting myself in your shoes, I don't know which way I'd go either, but I would definately monitor that inflammation.

I see the GI's point on Remicade, but at the same time, this is such a critical age. You only get one shot at puberty. That was a factor in our decision to go to Remicade. We felt we didn't have any more time to experiment and wait around for other drugs to work or maybe not work. You could be talking another 6 months here and he's already almost 15, right?

I think the Endo appt is going to be the key and will really guide you as to what to do next.
 
Yes, I think I'm kind of waiting to see what the endo has to say. So at the next appt Jack will be 14 1/2 + 1 week. If inflammation is still there I think I will tell him we want to try Remi.
LDN worked really well at first and I'm thinking/hoping he can go back to it some day maybe after he is done growing.
But I kept thinking about you today and how well your son is doing so far on Remi and hoping there is nothing found on MRI on Friday.
 
The other thing that convinced me was that Remi works for 75-80% of people the first year. It does tend to drop after that, but in my mind, getting even that little bit of time to grow and feel good is worth it. In your case, you could always go back to Azathioprine later, right? I forget why you dropped it...?

Good luck Friday!
 
I have done much soul searching and reading over the years and have, no doubt like everyone on this forum, developed my own ideas about Crohn’s…its causes, its treatments, its reactions and its responses and so these are just my own personal thoughts:

As much as I find the step up approach the more appealing and palatable road to take I very much believe in the top down tact. I think I feel this way because of the way the disease presented in my children, it was hard, fast and unyielding and as such I was given no choice in their outcomes. In many ways this has been a blessing because I wasn’t given the opportunity to think, to ponder and to second guess.

I agree with mlp regarding the biologics ability to change the course of this disease. A deep stable remission ASAP is in my mind a far better outcome than playing catch up because catch up means you are running behind the disease and it is dictating the race.

As you know, my two have had wonderful outcomes from their respective surgeries but they do live with a legacy from it and given a choice I would have chosen medication over surgery if it was an option. I know this isn’t the decision you are facing and in given situations surgery is indeed the best option but the opportunity to change this disease and stop it in its tracks with medication, thereby allowing you to take control of the race, is priceless.

There are no guarantees no matter what path you choose and more importantly there are no wrong or right decisions but rather what is best for your lad and your lad alone. Good luck hun, my thoughts and well wishes are with you. :ghug:

Dusty. xxx
 
I know these decisions are so hard and there is never an obvious answer, but I think you have gotten some great advice and it sounds like you are headed in that same direction.

I have thought of the issue of "saving remicade" too. I think of it this way, get Jack in really stable healing remission, and out of puberty so his mind and body and grow and develop healthy. 6mp will always be and option again later and probably some better drugs too.

Never easy decisions. (((((Hugs))))):ghug:
 
I'm sorry the results were disappointing. And it's so hard to be in the situation you're in... making these decisions is so very hard. :(

As much as I hate these meds, given Jack's age, getting the inflammation eliminated may need to take precedence over all else (at least, for now). As you and others said above, you can always return to other meds later... whether it be imuran or LDN. But, hopefully, by that time, he will have grown and may even be beyond his growing stage.

I always feel like we're up against a wall - I hate the thought of adding remicade when you can't see 'extensive' inflammation on tests; seems to leave so much doubt as to whether it's the right thing to do BUT the consequence of not treating the 'hidden' simmering inflammation can just suddenly sideswipe you and leave a lasting impact. While I wasn't truly happy/comfortable with the decision to add remicade to Stephen's treatment, I did it for all the reasons others have listed above... trying to avoid all permanent, lasting impact such as surgery, scarring and, in Jack's case, lack of growth.

sorry, I'm rambling a bit but I hope I made sense... :ghug:
 
Sorry to hear there is still some inflammation. Just want to add to the chorus about going back to the other drugs later.

For O we weren't given a choice as she was deathly ill so Remicade was the only option presented and the longer I hang around here the more comfortable I feel about it. She has been on it almost two years and no flares at all!

All the drugs have similar risks so to me the Remicade risk isn't that much worse. Also imho Remi has less side effects. I understand the thought of "saving" it but like others have said when they are kids you get one shot to grow. Also, the disease is more aggressive in kids. If Remicade can get them into a deep stable remission I say go for it. You could always go to the other drugs later, and there are more in the pipeline.

I hope the endo can shed some light on things and that your decision comes easier and if you do go to Remicade that it is his miracle drug.
 
Thank you everyone, I'm still a little shell shocked. I was really expecting everything to be normal. He has energy, is not pale, 1 solid BM a day. Only things are lack of growth and no appetite but I could reason away the lack of appetite thinking it's psychological and he just needs to remember to eat and figuring we would get some kind of answer on lack of growth from Endo.
A big glass of wine helped me get to sleep last night but it certainly did not keep me there.
Off to scour the forum for all your experiences with MRI since we have never done one.
 
Orders say MRI/enterography with and without contrast - I'm assuming that means MRE? No milk for 8 hours before, nothing for 4 hours before. Does that sound like MRE? They scheduled MRI for us at local clinic which is about 2 miles from our house for today but they called right back and said no it was more involved and we have to do at the hospital and earliest appt was Friday.
 
Based on his weight he's going to have to drink about 800 cc's of the contrast. How does he feel about NG tubes? That would be the quickest and most efficient if he can tolerate a tube. Especially since he seems to get full quickly and doesn't eat much. The contrast might fill him up too fast or he might not be able to get enough in and the worst thing to happen would be to "time out" and be sent home with no MRE. The NG tube bypasses the stomach. The more contrast in him, the better the pictures. Otherwise...

It tastes better cold and MLP suggested one time to bring Kool Aid packets to flavor it yourself. Don't use a straw, it just adds air. Walking around to get it moving through his system can be helpful. When things get tough, turn it into a game: every 45 seconds drink for 15 then take a break. The first time we did this several years ago I brought a small Lego set. With each drink, DS was allowed to turn the page in the instruction book.

Tell him he's going to be holding his breath a lot, sometimes for 20 seconds. If you can go in with him and hold his hand, work out some hand signals between the two of you. A squeeze if something is wrong. Pinkie lock if all is well.

Some people vomit when the Glucagon is added. I don't know if you want to give him a heads up on that or not.

After, drink lots and lots and lots of water to flush everything out.

Ummm... what else?
 
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He has never had an NG tube so I don't know. But based on the shakes I'm going to assume he would rather try and drink it. Can we quickly move to NG tube if he can't drink?

He would rather be fully informed so he can prepare himself but I might not tell him tell that morning so he can't worry over it too long. We have a 10am check in.

He knows he has to drink yucky stuff but not how much.

So he is going to feel yucky afterwards?

Alright I'm trying to think of a good bribe now. Maybe money and extra xbox time...
 
Will you be at a children's hospital? The way it worked for us last time was that we had to schedule the NG in case he couldn't get all the contrast down. This ensured that someone was around and an x-ray room was available and we didn't disrupt the MRI schedule too much.

After DS tried Child Life said we should probably switch to NG. We went to an x-ray type room where DS laid on a table while they inserted the tube. They used an x-ray machine over his stomach to guide them on where to place the tube. Watching the screencast an be a good distraction. Or not. Once in place, they used syringes to pump the contrast in slowly. No matter how slow they go, DS always vomits up some, so bring extra clothes just in case. He will feel very full. Maybe nauseous. He really needs to try and keep it all in though.

After the MRE, he might be a little tired. All that breath holding can be quite a workout. Maybe a little nauseous then too, but generally DS recovers pretty quick, especially with the extra water. Oh, and expect watery stool that night.

Now, I should caveat all this by adding that my son is a horrible patient and Jack may be perfectly fine with everything. We just tend to give doctors, nurses, and hospitals a run for their money around here.
 
No we have never done anything at the Children's Hospital although his GI is a part of it an located in the same building. It's all under one complex. They are under the umbrella of the main hospital - St. Lukes, St. Lukes Children's.
We are actually going to the St. Lukes in the neighboring town as they had first available opening which is what his GI requested which is only about 10 miles from our house.
Okay making my list, extra clothes for him, bribes and a large bottle of wine waiting at home for me..
Of course he has finals next week which is not helping our stress levels.... Hmmm might need something stronger than wine. Have plans to go Christmas shopping with my sister on Sunday (Her daughter has been having tummy issues and they have her on omeprazole and a food diary for now) and we were going to stop for some hot toddies. We may have to have someone come pick us up.
 
Johnny had no problem drinking the contrast. The nurse added crystal light and it did improve the taste. He was given zofran before he started drinking it, I think it was good he didn't know it might make him sick. He never complained a bit.

The glucagon was a different story. He felt dizzy, tingly, numbness and felt like he was going to vomit. It freaked him out and he thought he was having some life threatening allergic reaction. I would just give your son a heads up that it isn't abnormal to have a reaction and he could feel hot, dizzy or numbness but that he will be fine and it will pass quickly. Johnny felt better about 5-10 minutes later so it didn't last long at all. He ate some gold fish, had a slushy and we went home. The worst part was the fear he had that it was a major reaction. Over all, not a bad experience at all. It certainly helped that the nurses and staff were wonderful and tried to make him as comfortable as possible.

(((((Hugs)))))) I hope all goes well.
 
Also, the way the staff reacted I don't think that a reaction to the glucagon happens all that often. Hopefully he won't have an issue at all:)
 
My son had a really hard time drinking the contrast. In the end, he just drank it too slowly and the contrast wasn't were it should be by the time we had the MRE :frown: We had to reschedule and go back and that time did the NG tube. Wish I'd done the tube the first time.

You might want to check on NG tube - we had to have x-ray etc so many people involved.
 
DS had two or three mre plus two CTs
He had to drink barium
Three cups
Just added cherry Kool aid single pack split between the three cups.
Cherry covers all taste .
No issues .
Just boring laying on your tummy
 
A had an MRE and it wasn't a fun experience. She said the barium tasted disgusting (and we were not allowed to add anything for flavor) so we made a game of drinking it. I'm not ashamed to admit that we paid her, lol. Dollar bills can be very motivating for a kid! lol

She became nauseous pretty quickly so the nurse had her lay on her side. That wasn't very helpful and she ended up vomiting. Quite a bit of vomit really. But she continued drinking and apparently it didn't affect the test in any way.

I thought A would be freaked out by the noisy machine but she was fine. She was supposed to be able to watch a movie but it wasn't working. It was fine because I was able to sit near her and give her support when needed.

The glucagon wasn't pleasant. Almost immediately she became very pale and shaky. She vomited, pooped and peed right there in the machine. They cleaned up the vomit the best they could but couldn't reposition her body. She was mortified.

I hope your experience is a good one and that you get good results. Definitely bring a change of clothes just in case and maybe some cash too, lol.
 
So I'm loading my purse up with dollar bills... I talked to the hospital today and asked what they did if a kid was having trouble getting the barium done. I asked about an NG tube but she had no idea she was going to ask one of the nurses but didn't get a call back but she did tell me that one of the kids thought it tasted like blueberries :yrolleyes:. Jack knows he has to drink about 3 cups within in hour and he says he can do it.
I've warned him about glucagon and that it may make him feel awful for a bit.
And I think I'm coming down with a head cold - YUCK!
 
Good luck. Stephens usually fairly picky but he's had 3 MREs and hasn't had a problem drinking the contrast (did take his NG tube with him, had it ready to go but ended drinking most of it bcz he said it was okay). He did feel nauseated after one MRE but was ok after another (hubby and him even went out to eat right afterward and then had a 4+ hour drive home and he was fine - we'd taken him to the US for that MRE). Hopefully, Jack will hv no problem. :)
 
He made it through and they said they got some good pictures. He threw up twice, once while drinking the barium. Had nearly made it through the first bottle but had tears in his eyes and said it really hurt. The pain went away after he threw up and he was able to finish that bottle and didn't have to drink the second one.

He threw up again when the gave him the glucagen.

Said the drink was the worst stuff he has ever had - way worse then scope prep. He says the taste was indescribable. Tried to bribe him with money when he was struggling, he just looked at me and said I really don't care about money right now.:eek2:

So now we wait to see what the results are
 
Ha...yeah he is a teen a few dollar bills aren't enough...you have to up the bribe. Poor fella. Glad he made it through and that they got the pics they needed. Did they give you any idea of when they would discuss the findings with you?
 

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