Kinda freaking out...son is newly diagnosed

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crohniekid

crohniekid

Joined
Mar 1, 2014
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So I am brand new to the world of IBD...my son was literally just diagnosed last Monday. Here is a little background:
I started noticing that R was a looking a little pale and frail about 18 months ago. I wondered if he might be mildly anemic but was brushed off by our GP because he is a 9 year old boy...and because he is naturally pale.
Then nine months ago our family took a trip to Disneyworld. About 2 wks before we left DD (K - 4yrs) got sick with diarrhea. Then a week later my brother got sick with the same bug. So on our 3rd day in Florida none of us really batted an eye when R also got sick. But his symptoms were so much worse (fever...of 104...chills, extremely flushed, vertigo, vomiting, and extreme D) that we thought he must have gotten sunstroke too (DH is very susceptible to this). He was so sick that he didn't come with us to Disney for three days (he stayed with his aunt who is a nurse). Then, when he was able to come he had to go to the washroom at least every 1/2hr and literally had to sit in K's stroller in order to walk the park. Food was an absolute no...although he was drinking fluids. Being the extremely tough guy he is he insisted on going on every ride that Disney, Universal, and Sea World offered (yes even the frigging roller coasters) at least once.
When we got home we called our GP and were told that the flu could last up to six weeks in kids his age and if he still had D by then we should bring him in (at this point he was going about 5 times/day). One stool sample later----C Diff!!! AND mild anemia. GP was stumped as R hadn't been on any antibiotics in over 2 years. Order up a round of Flagyl and nothing....D persisted although samples were coming back negative for C Diff. No parasites but occult bloods were positive. GP became worried at that point since DH has a really scary family history of colon cancer and referred R to a pediatrician for further tests. Pediatrician was a whole new ball game. I got the 'pat pat' and eye rolling 'one of THOSE parents' looks. She said that the scopes that GP wanted had about an 8 month wait list. Even after I pointed out that R wasn't gaining back the 6lbs he dropped and wasn't growing. She told me that "he is still in the 50th percentile" (despite the fact that he was in the 85th 18 months ago) and that kids can taper off. I told her "that's great...but his identical twin is 3" taller in one year and about 12 lbs heavier...and they were always the same height/weight before". After every appointment she said to come back if anything changed. Well NOTHING changed...R still had D with mucous (and the occasional bloody one) about 2-3 times a day. :ybatty:
Finally last month I told her I wanted a second opinion and a referral to a pedi GI. Two weeks later it was ANOTHER dr...but this one actually took us seriously. I showed him pictures of R and T and he said that while R's bloodwork was not overly concerning the drastic difference in R's growth definitely warranted the scopes. 7 days later and R was in for endoscopy/colonoscopy. 45 min into the tests GI came out and said that R had CD. WHAT?!?!?!
R had stomach aches every other day (but not "painful"). No eye issues. No joint pain. Headaches that came and went (for which I gave him Advil...no one told me not to!!!) but were not alarming as I suffer from migraines frequently. No family history (and I mean anywhere that I can find).
We were told that R had two options--- an EN diet or Remicade. And that we would discuss those options further in clinic in a week. For now R was on a strict EN diet. That was five days ago....
So here I am. I must admit that I only understand about half of the terms used on this forum (and that half is enough to TERRIFY me).
I think that I might lose my mind...
 
big hugs
so glad you got a scope for your little one.
Sorry you have to be here.

Typically it is not an either or..
EEN ( not food formula only ) can be used to induce remission but a maintenance meds is needed to be started so when EN is done the maintenance meds can takeover.
one of those maintenance meds is remicade ( biologic) . most kids need at least an immunosupresant such as 6-mp/imuran .
Once you reintroduce food the symptoms and damage form the crohn's will come back .

some keep partial EN up in addition to maintenance meds.
my kiddo takes humira ( but has been on them all ) . he also takes partial EN ( peptamen jr which has allowed him to grow and gain like an average kiddo .
 
Glad you found us and hope you get the feedback and help you need as you move through life with this new challenge.

Everyone pretty much freaks out when their kid is (often after a very long time) diagnosed with Crohns. It's rare enough that most people have never heard of it or think it's the same as IBS. Which it's not of course.

As for the options, really that's offering you only one choice - Remicade. Because EN may get him into remission but it will only keep him in remission as long as he's not eating - at least that is what is true most of the time. After that he will need maintenance medication which would be the Remicade.

The good news is that the latest research shows that up to 80% of kids who start Remicade (or one of the other biologic meds) within 3 months of diagnosis will be in remission one year later. That compares to 65% who begin some other kind of treatment/no treatment in the first 3 months.

The fact that your ped GI offered you EN or Remicade strongly suggests that he/she is up to date on the current research and is doing a good job (in my opinion).

Many parents are very scared of using medications like Remicade or Methotrexate to treat their child's Crohn's. One reason is because the damage in the gut is invisible most of the time (unless they get a gut to skin fistula) and many people have very mild or even no symptoms despite having active disease. This is partly because the intestines don't have pain receptors quite the way they are in the rest of the body and so you can get fewer symptoms.

Of course, we all worry about the long term effects of these drugs but so far there is no evidence to suggest that there is a substantial risk of cancer (this is already higher in Crohn's patients but some meds do slightly increase the risk) or other damage to their bodies.

Certainly nothing to compare with the damage that untreated or undertreated Crohn's does. Imagine having open sores all over your swollen skin - that's what their intestines often look like. You wouldn't hesitate to treat that until it was gone and probably you would be willing to take certain risks in terms of treatment. Just the way parents of cancer patients take risks for the sake of their child's health.

Take a deep breath and know that it's going to take time to learn the medical terms and get oriented to Crohn's diagnosis and treatment. The first year is often hard if only for that reason. But it will get better and you won't feel so much like you're free falling with no net.

I would counsel you not to feel that you have to rush into a decision next week unless his symptoms are so severe you are talking about transfusions and surgery. That really does become an emergency and decisions have to be made quickly. But short of that you can take a little time - at least a couple weeks - to absorb this and consider your options. If he is able to tolerate EN, especially by mouth, then you can always choose that risk-free option and delay decisions about medications for a few weeks (assuming EN improves his symptoms).

One lesson I had to learn was that I had to find a ped GI I trusted - and then I had to trust him. It sounds simple but it's not and many people have gone through 2 or 3 or more GI's before they found someone they had a rapport with. So keep that in mind as you work with this ped GI and if you feel pressured or intimidated don't hesitate to ask for a 2nd opinion.

Unfortunately there aren't actually many treatment options so you will run out of recommendations pretty fast. There's
1. EN with no treatment until he shows signs of flaring again;
2. EN along with or followed by one of the immune suppressing meds (6-MP and it's derivatives or Methotrexate - MTX)
3. EN along with or followed by biologic meds (Remicade, Humira, Cimzia)
4. Prednisone along with 6-MP/MTX
5. Prednisone followed by biologic or biologic and methotrexate/6-MP together.
6. #5 but without the prednisone

My son was diagnosed at age 10 and is now 18. He's been on all these combinations and until we began using biologic meds combined with a immune suppressing med we could not get him into remission. Based on my experience I would endorse your ped GI's recommendations with the exception that I would add Methotrexate to the Remicade to help prevent him from developing anitbodies. But I am not a doctor. Just another Mom. So you need to take the time to explore your options and decide what is best for your family.

This is a memory aid you may find helpful when you talk with the doctor
B - what are the Benefits of this treatment
R - what are the Risks of this treatment
A -- what are the Alternatives to this treatment
N - what if we do Nothing
D - Decision

All the best
 
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Hi and welcome.:ghug:
I'm so sorry you have to seek this forum out but happy your here.

My girl is five and does EN, mtx, low dose prednisone and humira.
I'm a big believer in EN. Even on these meds at least I know her nutritional needs are being meant.

As far as losing your mind........you've come to the right place..........we've all lost ours a time or two.:smile:
 
Welcome
:welcome:
My son was diagnosed at 10 he is now 14. You have already been given some great advice. I can only 2nd (3rd) EEN will only help until food is introduced but like my little penguin my son keeps up with a couple of drinks a day to help with growth/nutrition.
We were not given a choice at diagnosis it was prednisone and Imuran, and I didn't even know/think to question it but his father also has Crohn's and was on Imuran. I wish I would have had this forum at that point as I might have questioned things more and decided that hitting hard/fast with remicade would have been a good choice as research has shown.
While my sons symptoms did indeed improve he had virtually no growth and did not gain weight for 3 years. We have recently started on remicade (January) and the complete difference has been amazing. Can't comment much on growth but then it has only been a couple of months but the weight gain has been tremendous.
One piece of advice is to ask for copies of everything and keep a binder (or whatever works for you). There is so much going on and decisions to be made and we are not always in the best place (many nights crying in the shower here) You know your child best and it is sometimes easier for you to notice patterns rather then the GI that sees many children. For example my sons labs are always within the normal range ESR is 7 when he is in remission and historically 9 when he is flaring which is still within normal range and most GI's would look see it within normal range and say all is fine. I'm able to remind him of this and it has led to further testing to find he does indeed have inflammation going on inside.
Best of luck and I hope he achieves remission quickly and stays there a long time. Please feel free to ask questions, vent or just share stories.
 
Thank you for all your input! Sorry, R is on EEN right now and so far so good orally. Dr. said that he would recommend EEN for 6-8wks and then a maintenance drug (but never specified...said we'd talk more in depth at clinic seeing as how we were literally outside the Day Surgery room). Or skip the EEN and go straight to Remicade.
GI has never put any pressure on us...it's ME feeling like there needs to be something done NOW as it's been nine months and we've done nothing. And then what if we make the 'wrong' choice? I'd hate to make him drink the formula (kids essentials 1.5) for 6-8 weeks only to go to Remicade anyways.
His symptoms are so mild that I can't believe that he could literally be one of the kids here that ends up in the hospital so sick and in pain...yet so many started out just like R. And the possibility that my other kids (especially R's twin T) might also become sick literally keeps me up at night. What if I miss it? We would prob not have noticed R (he is really, really good at hiding symptoms...he just wants to be 'normal'...even before we found out how sick he is) if it wasn't for the Cdiff (who ever thought I'd be grateful for THAT???) for years. In fact he is down to one BM/day...usually D...I keep hoping that maybe the GI made a mistake??? It feels so surreal :eek2:
 
Hi and welcome!
My daughter was diagnosed at 16 and has been on most of the available meds, including Remicade. Like JMRogers said, many GIs now are treating aggressively as early as possible, and so my daughter went straight to Remicade.
With regard to your other children, there is a simple noninvasive stool test, Fecal Calprotectin, that shows gut inflammation, which you could always request if they start to show symptoms. If it's elevated then you would know they need further testing.
It takes quite a while for all of this to sink in - M has been diagnosed almost a year and I often still can't believe she has Crohn's!
 
A lot of the meds take some time to reach theraputic levels so you would start them along with the EEN so that by the time he has finished with the EEN the meds have taken over and allow him to stay in remission.
Lack of growth is a huge indicator of disease activity in children and at times has only been that and a slightly elevated fecal calprotectin which have indicated ongoing inflammation of which an MRE showed inflammation throughout small intestine.
The disease can unfortunately be silent in some and be doing damage inside while everything on the outside looks normal. My son rarely has stomach pain, bm are 1 every 1-2 days. His only symptoms lack of growth, weight gain, and no appetite.
I certainly don't mean that is what is going on with your son just something to be aware of as I can certainly understand the desire to get your son in remission with the least amount of drugs possible.
momoftwinboys also has twins of which only one has CD while there are some who have siblings that have both been diagnosed many only have 1 child with the disease. As Maya has said there is a simple non-invasive test to check for inflammation and will let you know if further testing is warranted. You will most likely be hyper-vigilant as most of us our with our other children but chances are better they will not have Crohn's but if it does ever turn out to be true you will have a better understanding of what needs to be done.
 
Welcome to the forum but sorry that you had the need to find us.

It is overwhelming when you are first told of your child's diagnosis but it does get easier and, for me, I found that that more I learned, the better I felt that I could help my son deal with this. Things also become much less scary once you begin to understand the terminology, the benefits, the risks, and how others have experienced and dealt with treaments, symptoms, worries, etc. This is a great group of parents (and other members as well) and you will find lots of support, advice and knowledge here!.

One thing to remember... very often the members of a forum are those who are having problems and they are here looking for advice and support. It may seem that everyone who has crohns is constantly facing challenges. However, there are many, many people who have been diagnosed with crohns, who are living happy, active, healthy lives - but they are not on this (or any other) forum. I just remember when my son was initially diagnosed and joining this forum, that it seemed overwhelming.

My son did EEN to induce remission and stayed with EN as a maintenance treatment for almost two years. While it induced clinical remission (no outward symptoms), EN was not enough to treat all the inflammation and he started on remicade last year. He is much older than your son but, he continues to drink some supplemental shakes each day to maintain his nutritional levels.

As you've already been given some great advice, I'm only going to add some links to threads that I think may be helpful to you. But, also have a look through the other areas of this forum, there's tons of helpful info here!

About Crohn's Forum Families
http://www.crohnsforum.com/showthread.php?t=58424

Kids on Enteral Nutrition (EN)
http://www.crohnsforum.com/showthread.php?t=36345

Kids' Success Stories
http://www.crohnsforum.com/showthread.php?t=27079
 
Welcome to the forum. Sorry to hear about your son. As jmrogers4 mentioned, I have identical twin boys with one that has cd and one that does not.
H is the one w cd and he was dx at 10 and is now 12. We were fortunate that their ped referred him to gi clinic during an annual check up based on D and difference in height and weight with his twin. In our case the differential was greater in weight as high as 30+ lbs but height difference has been about 1 1/2 inches max. At this time the difference I think the diff is in weight is about 7lbs and 3/4 inch in height.
The biggest changes in growth occured after being on remicade and adding supplemental nutritional shakes.
when presented with the remicade option, it took us 3 weeks or so to decide to go ahead and it was amazing how much it helped. In retrospect, the delay may have been a good thing. From what I have gathered is that one of the problems with remicade is that it is so effective and can heal so quickly that scarring can result. He was on flagyl and cipro during the time we were deciding and the inflammation markers had come down significantly by the time he started the remi. My hope is during that time the intestines were already starting to heal so there would be less of a chance of scarring with remi. Who knows if my logic is true? So what you are considering may be just right, doing the EN getting the inflamation down and still doing remi Just my mom opinion.
Male identical twins with differences in health and size brings some unique things to take into account. You are welcome to private message me if you ever want to talk.
I am happy you have found this forum so early in your journey. It has been a great source of knowledge and support to many of us.
 
Welcome to the forum. My dd was diagnosed in December. I was talking to a friend the other day who is very supportive (her dad was diagnosed with Crohn's in his 40's). I feel like these few months have been like a "grieving period". I know that may sound weird, but I can't think of a better way to describe the feelings I have experienced from then until now. It is finally starting to get better. Hang in there -- this is a great forum which is full of extremely knowledgeable and supportive women.
 
Welcome to the forum. Sorry you had to find us as the others said but glad you are here. My daughter was diagnosed at 11 and is now 16. We had a rough journey due to her having allergic reactions to a lot of the meds but that was unusual. I highly reccomend going over to the treatment section and reading some of the threads there. It is the best way to familiarize yourself with the medications available and here how they have worked for others. Please keep us posted on how your son is doing!
 
I am surprised your son had c diff and then they found Crohns. Not impossible of course, but usually the other way around.

I suffer from both, but the cdiff was likely a result of all the immuno suppressants taken for Crohns. I tried a fecal transplant at the Mayo, but I still get bouts of cdiff. I have come to know the distinct pain and odor of cdiff, separate from my Crohn's conditions, and I have found those cdiff tests are not to be trusted. Flagyl does not work well for me for cdiff, but vancomycin does. I know when the cdiff clears, trust me.

I am sorry you guys are dealing with this. Remember this hits everyone a little different and its not a good idea to just start implementing things that may work for someone on a forum. Unfortunately, it takes a lot of trial and error to figure out how to individually manage Crohns.

When I was first diagnosed, I put myself thru the mistake of trying everything on the planet to "fix" myself. Ultimately i accepted there is no cure, and just started viewing it as a part of me. When I did that, I actually started feeling better.
 
welcome to the forum, but so sorry to hear of your son's illness. My son was dx'd almost a yr ago, at age 8. Our GI gave us the choice of EEN or Prednisone while a maintenance med kicked in. We chose Prednisone, but EEN was highly recommended, and I applaud you for making that choice. Our GI would only do it with a NG tube, and I just wasn't mentally able to handle that at that point in time. I hope you get your questions answered. This is a wonderful place to come for support and advice. Once you see some improvement in your son's condition, you will start to relax a bit. Take care!
 
So tomorrow is our first clinic. So nervous!!! At this point all I know is that R has crohn's and it's in his ileum primarily. Not sure what to expect.
Day 6 of EEN and going strong but getting sick of the vanilla. Chocolate and strawberry kid essentials 1.5 is impossible to find and/or ship to canada (so frustrating!!!!). Going to ask if we can throw some reg essentials and pediasure in the mix. R says he feels better already so that's good.
As for the cdiff, I work in a lab so I totally thought it was just lab error. We repeated the tests and got cdiff again (and I can tell you that collecting those samples had me gagging....had a puke bucket the second time just in case...which after five kids and a job in the hospital isn't easy). So totally weird but I guess it does happen??? Flagyl did not 'fix' the diarrhea but seemed to clear the cdiff as the smell got CONSIDERABLY better and d tapered off quite a bit. D seems to be R's primary symptom though (less that 15 'normal' bm's since may 2013). Even on EEN.
 
It is so overwhelming when your child is first diagnoised. My son was 8 when we got the diagnosis of crohns [ now 13 ]. He had been ill for around 18 months before that. I would say that Josh never had "typical" crohns symptoms, so the diagnosis was a total shock when we got it. It is so frightening at first dealing with the disease and learning your way round all the new terminology, medications etc.
But it does get easy the more you go along, your understanding gets far better.
My son went straight onto Prednisone and Pentasa, and then a few weeks later azathioprine.

EEN feeding works wonders and really helps children, so it is good that your son is doing that. My son never liked the flavourings that came with it, we used Crusha syrup which helped. This is a milk shake syrup that we can buy in the UK, not sure if you would have similar in Canada? I felt that anything that made my sons life easy by having to use EEN was well worth it.

Hope your clinic visit goes okay :ghug:
 
Every place is different. At our first clinic they did a pyschological questionnaire that we each filled out, mom dad child. We were introduced to dr and clinical nurses who were available for questions. We met with a nutritionist (not a lot of help). Met with a social worker to talk about sources of financial assistance and school questions if we had any. We also met with psychologist mainly to talk w H about how he was doing and talk about coping techniques. It was a long visit. With a blood draw in the mix. Again every place is different. You may want to call ahead and ask what to expect so you can answer your sons questions if he has any.
We asked H to step out for a bit and asked about odds of his twin. We were told 50% in identical twins. I have seen other things since that not as high as that. Knock wood so far so good.
A couple of visits later N came with us to get a feel for what his twin was experiencing. I believe the psychologist suggested. In our world it was a good thing. There was period of time we were concerned about N and he had a visit at the gi clinic as well all was ok but I think it lowered stress somewhat knowing what to expect.
Good luck with you visit.
 
Not much help with clinic, our first appointment we talked about treatment. What we were starting with where we would go if that failed.
C-Diff does have a certain smell. Nearly enough to make the strongest stomach heave.
When my son was on EEN it was definitely more liquid than not. Liquid in - Liquid out.
Double check but we were okay with Pediasure on EEN while waiting for a Peptide order to come. The biggest issue would be calorie count as 1.5 has more then pediasure from the store which equates to a 1.0.
Good luck at clinic today!
 
So the clinic went pretty well I think. GI confirmed that the areas of concern are the ileum and the top portion of the colon. He showed us (DH, R and I) the colonoscopy pictures and the bloodwork results they took during the scopes. His last bloodwork was in late August (pediatrician didn't see any reason to redo any bloodwork in the six months since...even though he was anemic and had a 'slightly' elevated CRP...her words). Strangely enough even though he was in what I know think was a flare in August (d 10+/day) and now only 1-3/day his bloodwork is soooooo much worse. CRP quadrulpled, ESR is elevated, anemia is worse and his iron stores are nil. GI prescribed iron for R (which he has started) and we have decided to try Imuran at the moment. R is scheduled for a TB test and bone scan next week, and waiting on ophthalmologist and MRI ASAP. The GI said he wants to make sure that they are not undertreating R and he wants to see exactly how aggressive they need to be. Weekly bloodwork for the next 6 months minimum and GI wants to see R every 3 weeks.
Does that mean the Crohn's is worse than 'mild/moderate'??? I didn't want to ask in front of R.
Good news is that the dietician said we could throw some adult Ensure plus into the rotation for flavors as long as he primarily drinks the kids stuff. Almost two weeks in!
 
:eek: wow this GI is on the ball. That's great.
As far a severity that depends It sounds like you son might be on that end because of the close monitoring.
The mri will help tell the more of his story.
Has your son had a pill camera yet?


Hugs
 
No. And the GI never mentioned that or a Fecal Calprotectin test (which R has never had). Maybe not as common in Canada???? Or maybe he is waiting on the MRI results....
 
With elevated ESR and CRP GI may feel it is not warranted as you already know there is inflammation going on. MRI would be to see if there is inflammation in the small intestine which they would not be able to see with scopes.
My son has the FC done because his blood work is always normal even when MRE and FC along with symptoms tell us there is something going on.
Weekly blood monitoring would also be due to the Imuran as it can take a little while to tweak and find the right theraputic level. It depends on how fast/slow his body metabolizes it and to check liver function as that is where it is metabolized and some kids are unable to metabolize it and need to find a different med.
It took us a long time to get to theraputic level we kept increasing the dose and he metabolized it too quickly we were up to the same dose that his 200 pound father was on where he was only 70 pounds 150mg. We were able to back the dosage back down to 75 mg and add allipurinol which makes the imuran more potent and metabolized a little differently and he stayed on that for several years.
Hope it works quickly.
 
crohniekid, we're in Nova Scotia and my son had the fecal cal test early on, but has never had the pill cam, and no mention of it by the GI either. I see more talk of that test on this forum among our American friends, but maybe it varies between GIs. My son had an indium test done, which I see very little mention of on the forum, but it was so very helpful to us. It's a white blood cell scan that shows where the inflammation/infection is located. It's fairly simple and I could see on the screen myself where my son's CD is located. The pic of his small intestines lit up like a light bulb! Maybe it's only useful in certain cases though, not sure. Just thought I'd mention it. My son was getting weekly bloodwork done while he was on Imuran too.
 
Hi and Welcome,

Sounds like your ped GI is really on it! It's scary and sucky, but thankfully we have each other to vent to!

My son, now turning 10 on Wednesday, was diagnosed when he was 6. He's been on most meds, but nothing really gets him into remission. He's very lucky in that he's mostly "symptom-free", although not really! He's tiny - no growth, no weight gain, no appetite.

After doing SEN nightly for a while and seeing nice improvement, my son decided he did nto want to do the feeding tube every night.. and once he made that choice, I couldn't force him. So, we started remicade a month or so ago.. and for the first time in 4 yrs, his bloodwork is going in the right direction. He's also on 50 mg Imuran and 25 mg allopurinal to enhance absorption. I keep waiting for some weight gain and growth, and know that it may take some time, but I'm thrilled with the clinical results of remicade.
 
So R has been on EEN for 4 weeks now. I must admit that I thought I'd see more of a difference. The his main symptom- diarrhea is still present (I was expecting that). He complains more of upset/gurgling stomachaches than he ever has (but he was told by the doctor he needs to stop hiding his symptoms from me and started both imuran and iron...both are good for tummy aches). He's had two nights a couple weeks ago of rectal pain (nothing since...thank god as I really don't think I'm ready for something like a fistula). Headaches and dizziness. And now green diarrhea the last 2 BM's. Everyone has such good things to say about EEN but I just have the feeling it's not working. We see our GI Wednesday morning...should I call this close to an appointment???
 
In my experience, green diarrhea means the Crohns is at it's worse, and the body is simply processing way too fast. Prednisne is necessary to slow it down.
 
Update: R saw the GI today and as I've suspected for the last two weeks the EEN is not enough to get him into remission. We saw very promising results from his blood work 2 weeks after his scopes but at the 3 week and now 4 week the numbers are slipping on his CRP and iron levels (strangely his ESR is holding steady). That, combined with the liquid diarrhea, has led the GI to prescribe Entocourt. R is allowed to start eating 30% of his calories from food and supplement with the Kids Essentials. I'm hopeful that we will FINALLY see a change...but still kind of in that dark place that isn't holding my breath.
On the plus side they said that R has gained almost 1/2 lbs in the last two weeks!!!!
 
Oh yeah...the MRI showed that R has inflammation in 15cm of his terminal ileum/beginning of colon...is that a lot????
 
What is the plan for maintence meds since entocort is not maintence.
Fwiw DS did not get into remission on EEN alone or even pred plus EEN for that matter.
Good luck
 
Full EEN never worked for Grace. We went to prednisone for three months and that seem to be the trick. However on the second scope she faired worse. Now on mtx and humira and still waiting for it to work.:hug:
 
His GI wants him to ultimately end up on 75mg of Imuran. We started with 25mg and just moved up to 50mg. He will move up for the last time in two weeks...assuming his liver bloodwork remains good.
Is it weird that I'm more freaked out about the steroids (I think that is why we are trying Entocourt instead of pred) than the immuno suppressors and biologics??? Their side effects are so immediate and more common....:confused2:
 
GI laid out all the advantages/disadvantages of Prednisone and Entocourt and said that I could pick. He said that the prednisone had the best chance of putting him in remission but also the most serious side effects. He said that given the location of R's disease the Entocourt certainly had a good chance of achieving the same results...so I played it safe (and chicken).
Farmwife was Grace on her full dose of prednisone for the three months and then taper off? Or was that total time? How long before you saw physical results?? How long was she between scopes???
I'm sorry that your son didn't achieve remission My little Penguin...is the Humira working better??
 
My daughter has been on both Entocort and Prednisone and definitely preferes Entocort! She had no side effects on Entocort and it worked well for her. I think she felt better in less than a week, but I can't remember exactly. Her disease is mostly in her terminal ileum and some part of her colon.
Good luck!
 
crohniekid said:
GI laid out all the advantages/disadvantages of Prednisone and Entocourt and said that I could pick. He said that the prednisone had the best chance of putting him in remission but also the most serious side effects. He said that given the location of R's disease the Entocourt certainly had a good chance of achieving the same results...so I played it safe (and chicken).
Farmwife was Grace on her full dose of prednisone for the three months and then taper off? Or was that total time? How long before you saw physical results?? How long was she between scopes???
I'm sorry that your son didn't achieve remission My little Penguin...is the Humira working better??
Click to expand...

Hmmmm, if memory serves me right (which it seldom does) it was three months at full dose and then a month worth of taper. She was scoped 8 months apart. I think.:ybatty:
We saw results with in a day or two. It was wonderful. However now she's on low dose prednisone and struggling with it a bit.
 
After reading the posts here I have no idea why I thought it would be different/easy in our house. Maybe because it had never really interfered in our daily lives (except when he got cdiff)...R played sports, went to school, ate well (although he often ate only because he knew he should...not because he was hungry). Since being diagnosed I swear that things have gotten worse. New symptoms (constant stomach cramps...sometimes wave like, sometimes stabbing, sometimes 'achy'...mouth sore on the corner of his mouth, fevers, green water diarrhea every other day (regular water diarrhea on the other day), and now a refusal to eat because he is 'full' and the food/boost 'tastes funny'), blood work that is moving in the wrong direction in regards to his iron and CRP, headaches every day. Every time we go to the doctor's we have added a new medication. He has now been on EEN for almost 6 weeks, Imuran for 3 weeks and Entocort for 2 days. I know that most of his medications are not at therapeutic levels...but should he be getting worse?? I would have expected no improvement...but I don't know what to make of this new trend. Can you 'flare' if you've never been in remission?
 
What is his Entocort dose?

We've only done pred before and it usually kicked in within a day to a week.
 
He's currently on 9 mg of entocort. He also just said that he had black diarrhea that made him barf. Of course he didn't let me see it. I guess I will be calling the GI again. :(
 
It might take a bit longer for the Entocort to kick in. Hang in there:ghug:
 
Just a suggestion from an experienced Crohns patient......I have CD, UC, colitis and a few other lame diagnosis.

I was very ill in 2004 and went to the hospital...no diagnosis as all assumed the flu.
Became ill every 6-12 months and after 4 medical professionals no isolating the issue, one awesome medical professional hit the nail on the head......celiac disease, crohns / UC , malabsorption issues, etc........

From 2008 to 2013 I listed to all medical pros, took their pills and advice as they all have good intentions BUT I was slowly dying as I lost weight and life just sucked.

I did my own medical research and found LDN (Low Does Naltrexone) and so far it is awesome and a god send. I feel better, have not had violent D since last year and am slowing gaining weight......first time since 2008.......

I suggest you read up on it and find a way to try it. You will not get too much support from a regular medical professional as they are not trained on LDN nor does insurance cover the prescription but it is the best $35 per month I spend.

Since he is newly diagnosed, please consider my 6 years of experience with this disease and 2 years of begging my doctors to give this LDN a try.

I hope this helps and everyone feels better in due time!@
 
Hope the Entocort kicks in soon. The Imuran can take a few months to work. Hope the GI rings you back soon
 
Has your son had his liver numbers (ALT, AST, Bilirubin) checked recently? When my daughter was on 6-mp she became ill because the medication became toxic to her liver. She had headaches, nausea/vomiting, skin rash, etc. Might be something worth looking into.
 
Thanks for the support guys :ghug:
DanceMom- R gets his blood work drawn every week on Tuesdays. So far they've said that his liver panels are good but his CRP is 11 and his iron keeps dropping.

His symptoms REALLY worsened when we added the Entocort...but I have my suspicions that it's the iron causing many of the unwanted side effects. I'm going to get his blood drawn tomorrow and then stop the iron for a couple of days to see if that helps. The GI has already mentioned the possibility of R needing iron transfusions because he can't seem to absorb it by mouth. And let's face it...way safer to stop the iron for a couple of days and if things don't change I can be pretty sure it's the Entocort.
 
Actually you can't be sure...
A lot of the symptoms are similar to crohn's flaring in the beginningor never getting to remission however you want to look at it .
It can take a very very long time to get back to baseline ( not normal pre dx but the kid functions and has more good days than bad).
Most take one to two years to get there.
I know you want the meds to work quickly but the Gi tract doesn't work that way.
It didn't get this way over night and can't be fixed quickly either.
The entocort needs time.
You need to discuss without hold the iron pills with your Gi especially if his iron numbers are still dropping. Your GI can explain the reasoning behind things so you can have a better idea of what to expect gong forward.
Did you discuss an end point for entocort ?
As in when if it didn't work you would move on..
What is plan B and plan C ?
These are good things to ask your Gi.
Most Ibd kids can't absorb iron supplements by mouth.
It is very common.
 
My daughter was one of the kids who had a hard time absorbing iron supplements. Her ferritin was quite low and so after two weeks or so, she had to have iron infusions. They were very easy -- not very long and she felt better (less exhausted, less pale etc) after the first two.
I also agree with what MLP said above - posters on this forum say often "it's a marathon, not a sprint" and we have definitely found that to be true. Normal does come back eventually but it did take a year for M to go into remission (well, her Crohn's is in remission anyway, not really her arthritis).
 
I have never been a very good marathoner!! Like Gimli said in LOR "we dwarves are natural sprinters"
MLP--You are right about the iron. I'm going to wait for the results and ask GI to switch to infusions if they dropped again.
As for the next step...I don't know. And I hate not having a plan. I like black or white...right or wrong. The grey area of Crohn's is driving me CRAZY!!!!
 
Hi. Sorry you have joined our very exclusive club! I wont add too much technical info as it seems the others have given you a lot of great info. There's some good news for you that I'll deliver. First, You found the absolute best source of information other than your GI. These folks know the drill and will guide you anytime you need. The other good news? It gets better. The initial fear and concern will never go away...but it does fade as you begin to understand what is happening and what needs to be done. In addition, there is always reason to be optimistic. It's a strange disease...presents in weird ways....and sometimes gets much better for a variety of reasons. In my case, I like you had a sick 11 year old...losing weight, no appetite...pale...vomiting. We were also to,sit could be a long lasting virus....and then nearly a year later discovered it was a SEVERE case of UC. We fooled with some powerful meds(6 mp) and they screwed with his liver. So remicade was the next step....we did not try remicade as I was looking into LDN (read up on this when you get the chance ) and while we stalled we kept him on only pentasa. To our surprise our very sick kid leveled out. Fast forward to today at 14....he feels great. Labs are great. Growing again..huge growth spurt this month. Dr is now re evaluating his diagnosis and thinks it may be a more minor case of UC. No one is sure why he was so sick if his case was more minor. Anyhow, my point is stay strong, stay in contact with these folks here, and stay optimistic!
Also, we too did not use fecal calprotectin tests until he leveled out and they are now done only to confirm there are no small issues developing that aren't showing up in his bloodwork. Kind of like a "fine tuning" test.
Best of luck and here's hoping for a fast and lengthy remission.
Dutch
 
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I was misdiagnosed until I was 15 and can empathize. My parents had no idea I was sick until I started high school and was being made fun of for being too thin and missing too much school. I was even treated by a psychiatrist for somatization and bulimia. (The antidepressents, of couse, made me even more sick and did nothing to help me.)
After being diagnosed with CD, I also went through feelings of "maybe the doctors were wrong" when I felt well. Then I realized that the label doesn't matter. It is helpful, don't get me wrong. When I'm having odd symptoms I can type it into google and find a place like this where there are people experiencing similar things to me. But don't get too caught up on the label, and don't let your sweet son feel he is different!
I didn't tell my friends at school I had CD until college because I was so embarrassed. (And the dumb commercials didn't even exist yet!) Now I find that I meet more people with similar diseases - RA, Colitis, etc. It's comforting, but that doesn't mean we are both doomed to the same fates.
Try to teach him to stay positive and focus on other things. I'm not in denial, but I find that when I go on with life and distract myself (I take online classes, work, do yoga, am engaged, plant terrariums, etc) from the label of CD and just accept that I'm not feeling my best, things go better. Stress is my #1 trigger, so I just take one day at a time.
When I was your son's age, I was going through the same things. Missing field trips, vacations, coming home early from camp, etc. It gets better. Remicade was the best thing that has ever happened to me. I was on it for 10 years before switching to an injectable. Remicade was certainly my wonderdrug.
I hope your son is done with the worst of his suffering and is put into remission quickly. Sending thoughts and prayers his way!
 
Thank you so much for all of you who have supported me on this journey so far. R is NOT doing well AT ALL. I just got his blood results from last night and his CRP is over 90, ESR is 21 and LPS is 74. GI nurse never even got to the iron and hemoglobin. She said to hold everything and wait for them to call back. They are going into clinic and will want R to come in today.
 
I know that must be terrorizing. I had a few thoughts as I read through this thread. The black stools: Could be caused by the iron supplements? EEN and an ongoing diarrhea: My daughter did not tolerate the Ensure that they gave her to begin her EEN. She had ongoing diarrhea or "wormy stools" until we changed her to Peptamen Junior. She couldn't drink it and so she had to have the NG tube. After a 5 week period of switching to the Peptamen Junior, which is predigested, she was doing much better. The stools improved significantly within a couple weeks of switching formulas, and her tummy felt much better. At this point, she was finished with her 8 weeks of EEN, and she did not want to get another NG tube, so we found a way to make the Peptamen Junior palatable by mixing it half and half with the Ensure. Later she was able to switch completely to Ensure again without side effects. Regarding him not improving/getting worse: The Entocort is not as strong as the prednisone AND he hasn't been on it long enough to really judge how it's going to do. The Imuran may yet work, but unfortunately it takes a very long time to become therapeutic. Hindsight being 20/20, we did end up using prednisone one month for what we thought was a flare, and it was the best month she has had during her whole course of treatment. I think I like it because it increased her appetite :). She liked it because it gave her more energy and made her feel better.

On another note, I wouldn't be surprised if his gastroenterologist is starting to think of changing to Remicade…

Let us know how it goes.
 
So we saw our GI again today...and even he is not sure if R has an acute infection causing his crohn's inflammation markers to be out of control or if his crohn's is flaring at a crazy rate. R has lost 4lbs in 6 days. He stopped all R's supplements, the Entocort, and reduced his Imuran back down to 25mg. Started 30mg of Prednisone while we wait for additional blood work and stool samples. Of course R is feeling better today...but I think that the bulk of his outward symptoms were due to his medications (GI told him to skip Imuran today too)...most notably to the iron (which GI has agreed to infuse from now on).


On the lighter side...2 hrs after taking the prednisone and I have a ravenous little monster...the 4lbs should come back quickly...:rof:
 
I'm glad your doctor is right on it. Sounds like it was necessary since he was taking such a rapid nose dive in his symptoms and labs. Hopefully you can get some good sleep tonight knowing that he is in good hands...
 
So prednisone has definitely improved R's appetite...so much so that we now have to monitor what he eats because while a few pounds would certainly be appreciated he would be devastated to gain 20!! His BM's have really improved as well (this is the first treatment to do that). He had blood work done Monday and things are a also improving there but not perfect. His CRP is sitting at 26 (down from 128) and his lipase is at 70. GI said to go back up to 50mg of Imuran and to start tapering the prednisone as planned Wednesday. And then BAM fever (102), headache, stomach ache/hard stomach and BM (which wasn't D...but not formed either) in the middle of the night. So DanceMom may be right and it may be the Imuran. The GI had mentioned pancreatitis as a possibility at our last appointment but couldn't feel any inflammation when he examined R. I'm going to try again tonight and see if a pattern emerges before I call the GI in case R is just coming down with a bug or something. GI also mentioned that R's fingers are starting to show some signs of clubbing...anyone else's kids have this??
 
There was someone else whose child had fevers from Imuran.. I think it was CrohnsKidMom?
Glad prednisone is helping!
 
Sorry about the fever .
DS had signs of clubbing in his toes not his hands.
But gi said clubbing is common with Ibd in kids due to malnutrition etc..,
Good luck on the Imuran
 
So good to hear his numbers have improved and appetite too! :) But equally sorry to hear about the fever. :( I hope it is just one off mum! :ghug:

Sarah went undiagnosed for 18 months and at her first visit to the GI post op he could detect clubbing of her fingers. I couldn’t see it but based on what he saw he predicted her inflammation had been present for about 2 years. It is a response to chronic inflammation and depending on the severity will usually resolve, and quite quickly in many cases, once the underlying cause is successfully treated.

Dusty. xxx
 
Glad to hear the Prednisone seems to be working:)

My son was very hungry as well. He had a lot of weight to gain back so we let him eat what he wanted. Healing will burn/take a lot of calories so we were happy about the weight gain, good growth followed about a year after. Some of the weight gain will be water and he should lose it once he stops taking the prednisone.

(((((Hugs)))))
 

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