Symptom free... or not?

[Mehita]

This is kind of an odd question, but can you describe what your child is like when they are symptom free and feeling good?

Quite honestly, my son had been sick for so long, I'm not sure I know what "symptom free" means for him. Would it be something similar to how he feels at the peak of prednisone (maybe taken down a notch)?

He tapered off his last pred dose about three weeks ago. Since then his appetite has dropped significantly (I know that's pred related) and stomach cramps are starting to come back a 2-3 times a week. Maybe this is normal for him? Maybe not? I don't know.

Am I the only one who freaks out with every unusual BM and stomach ache?

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[Clash]

Nope most of us newbies freak out over bms, tummy aches, energy levels...doesn't take much to get us researching.:shifty-t: The question you ask about symptom free or remission is one that is constantly rolling around in my mind.:biggrin: The pred really mixes everything up, while on it C(my son) was over energized, always bouncing off the walls, eating huge meals, now that he has tapered off his appetite, of course has diminished greatly. I know this is the pred but it is becomes disconcerting to adjust to in the beginning. Since being off pred and moving to Remicade C hasn't really had any pain symptoms so I really don't know about that but I am sure someone will be along shortly with more experience and advice than I can offer. I do hope your son becomes symptom free.:ybiggrin:

 

[Farmwife]

No your not the only one that freaks out at this!:yfrown:

The question has be asked on a thread before.
I think the overwhelming response is
he should be symptom free of everything.
I'll try to look up the thread to make sure I'm right.
Someone please correct me if I'm wrong.
I'm not an expert, I just play one on forums.:ybiggrin:

:soledance:Farmwife

 

[crohnsinct]

Would it be something similar to how he feels at the peak of prednisone (maybe taken down a notch)?

Good question. O's swim coach and I often find ourselves nostalgic over the gool ole prednisone days...when things are looking rough I joke that I am like a junkie looking for a prednisone fix.


As for symptom free..Haha I wish I could say you were alone but girl you have plenty of company!.

For O she is never truly 100% symptom free BUT I think that is because so many of an IBDer's symptoms can happen to anyone from time to time so it is very difficult for us to judge if their fatigue is just plain old tired or Crohn's fatigue, stomach ache just your run of the mill or Crohns, same with just about every other symptom...diarhea, constipation, headaches, bleeding etc.

I think the things we newbies have to concentrate on is trends and increasing in magnitude or maybe even the appearance of a new symptom.

O definitely had a dcreased appetite after coming off prednisone...less energy too. She also had bleeding return and that one has never gone away 100%...she bleeds from time to time but everyhing else looks good and blood tests come back o.k. so doc said not to worry about occasional blood.

I hope your son's cramps subside and turn out to be nothing really to worry about.

 

[Tesscorm]

Hi Mehita,

I would say symptom free is exactly that, most of the time... no pain, normal appetite, fairly normal BMs, normal energy level, etc. But, keep in mind, even without crohns, anyone's appetite, BMs, energy levels, etc. can vary from day to day, person to person.

My son has almost no symptoms 90% of the time but is not in biochemical remission (tests still show active inflammation). 'Normal' for him is almost the same as 'normal' for me, however, once in a while, he does have short periods (a few days) when he feels 'off' (loose BMs or constipation, less appetite, etc.) and he recognizes it as being crohns-related. But the symptoms have always gone away with little intervention. I think these episodes are 'normal' for him. I suppose it could be the inflammation acting up??? or, in his own words, 'mom, I have crohns, sometimes these things are going to happen'. (In other words, 'stop babying me!' :lol

I also think some short term symptoms (not a 'flare' though) might be caused by 'something' (activity or food) and, if you can identify it, eliminating that 'something' could help alleviate some of the symptoms (ie the cramps). For example, my son rarely feels any pain, however, he found that long distance running (at school) consistently caused him pain, which would in turn cause him to have less of an appetite that day. So... we eliminated the running

If Lukas' symptoms seem to come and go and, if you haven't already tried, perhaps, try to keep a diary (I think there's one in the forum wiki) of foods, activities, etc. I haven't been able to identify what causes my son to have his 'off' days - a food? other activity? not enough sleep? But, maybe with enough time (and consistency - not easy to come by with a teenage boy!:ywow, you may find some sort of pattern???

 

[my little penguin]

For us - all numbers are normal but DS still has signs and symptoms so we are changing therapy again to try and get to remission.

 

[kimmidwife]

Mehta,
What maintenance medication is he on? If the stomach pain is back I would be keeping a careful eye on him. For Caitlyn remission has been maybe a very rare stomach ache but most of the time no symptoms. Of course when she does have an occasional symptom I do still freak out.

 

[Mehita]

Good to know I'm not the only one who freaks out (or the only pred junkie!). I can't wait to tell Lukas - all the moms and dads do it so quit rolling your eyes at me

He just started Pentasa as his maintenance drug in January. By March he was starting to show symptoms again, so we upped his dosage. He flared again in May. Makes me think the Pentasa isn't doing much for him, though overall he's much better than he was a year ago. He has a stricture, so I often wonder if he can ever be completely symptom free as long as the stricture is there. It's all about keeping the stricture happy around here!

I do log everything to try an identify patterns, but nothing has really stuck out yet. Of course there are a gazillion factors at play... school starting, puberty, a cold, forgetting his meds one night, too much dairy another night, simply not enough food another night.

After reading what you've all said, I guess maybe I'd put him in the 90% symptom free range, but possibly trending downward. I was just hoping for a little longer reprieve of freak out free living. Thanks for all your input!

 

[izzi'smom]

No pred junkie here. but we all freak out, new or not. Izz is 20 months in, has been healthy since May, and I am FREAKING that her disease is returning.
I considered her symptom free (no pain, fairly normal, though occasionally urgent, bms, no blood) plus her CRP was down to 1.4 from 60. Her scope showed mild chronic inflammation though.
It's hard to get used to the "new" normal, and I believe it is ever-changing...

 

[DustyKat]

My two have been in remission since their surgeries, 6 years and 15 months respectively. They have both been left with some residual chronic diarrhoea due to the surgery but they now have that controlled. So for them remission is no evidence of symptoms both physically and clinically.

Am I the only one who freaks out with every unusual BM and stomach ache?

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Lordy no!!! Even after all this time the kids only have to say they don't feel well and the first thing that pops into my head is...ARRRRRGH! CROHN'S!!! It could be a cold and I start thinking...I hope that doesn't trigger Crohn's. It could be exam stress...I hope that doesn't trigger Crohn's. It could be that they don't feel hungry...OMG is the Crohn's back. It could be they feel tired...OMG is the Crohn's back! I think you probably get the gist by now! :lol: Unless they are 100% super duper bouncing off the walls healthy I think the Crohn's is coming back!

I don't think it will be too long before you find me in the corner hunched down, rocking back and forth and plucking my eyelashes out one by one. :eek2:

Dusty. xxx

 

[Tesscorm]

I think it would be easier if we all just hire an aesthetician!

 

[Patricia56]

Hi Mehita,

Welcome to the board. Sorry you had to join our little club but glad you found us.

To answer your question, when in remission your child's behavior should be pretty much normal and he should have virtually no symptoms. Maybe he might tire a little more quickly or have some issues because of side effects from his maintenance meds but if he is in remission he will have virtually no symptoms. Maybe more gas and he is more likely to get sicker than his peers when he gets a stomach bug or upper respiratory illness. Otherwise, no tummy aches, diarrhea, bloody stools, etc.

I am not a doctor but based on our own experiences I would say your kiddo is NOT in remission and from the looks of your previous posts has probably not been in complete remission so far (but hindsight is 20-20).

This is a big edit to an earlier and lengthy post. I just got finished finding and reading through all your posts. I sure wish I had been on the board in May. Anyway, I will write and post a new reply in a little bit because our experiences appear to really apply to your situation.

To sum up, my advice to you: I really think you need a 3rd opinion and that your son needs to be on much more aggressive treatment.

I know in Minn most folks have to travel to Minneapolis/St. Paul which can be a long haul depending on where you live. Mayo Rochester is fabulous, Univ. Minn is very good. If you need specific suggestions, just ask.

 

[polly13]

When Lucy is well she is like any normal 3 year old, happy, eating, having fun jumping around the place and most of all not screaming when she does a bm. I have to say it is like having a different child in the house.

 

[Patricia56]

This post is based on what has been true for our son. This may not be true for your son but after being on pediatric IBD boards for 6 years, I can say it seems to be typical of kids with strictures found at or soon after diagnosis. Obviously I am just another parent and not a doctor, so please check everything I say out with the doctor of your choice.

In our expericene, until proven otherwise, strictures at diagnosis and/or in the presence of inflammation are probably just that – inflammatory, or mostly inflammatory.

Until the child is in solid remission you will not know to what extent the stricture(s) are permanent scarring.

In my son’s case he had multiple significant strictures in the jejunum and TI at the time of his first SBFT 14 months after his diagnosis. The longest in the distal termal ileum was 14 cm or roughly 6 inches. He also had significant inflammation but only mildly elevated/abnormal labs. His weight was above normal but his height velocity had plummeted 2 st. devs.

We were told that strictures that are the result of scarring do not respond to anything but surgery and dietary management to avoid foods that can cause blockages like popcorn, etc.

You can get partial blockages due to eating things like popcorn and these are hard to tell apart from partial blockages due to inflammation. So are full blockages due to inflammation. However in both cases, we were told to expect strong to severe pain along with things like vomiting.

I did not see this mentioned in any of your descriptions. You describe changes in his stooling patterns, including urgency and constipation, nausea and vomiting but not really bad pain.

This fits our son’s symptoms almost to a T. Including the ribbon poops. (You don’t get ribbon poops from strictures in the small intestines. You get them from inflammation in the lower colon and rectal vault.)

Strictures that are the result of inflammation respond to prednisone and other forms of treatment, assuming treatment is successful.

I think the conclusion, based on your descriptions of your son’s symptoms and his responses to the prednisone bursts, is that he did not stay in remission following the prednisone bursts and that his symptoms were signs of recurrent inflammation.

My son achieved full remission on a combination of 6-MP and Humira. We switched to MTX and Humira after he got into remission and he is now on MTX alone. He was in solid remission for about 3 years and has recently started having some issues again.

His MRE in June showed… not a single stricture. Not one where before there had been multiple strictures, so many that the radiologist could not identify them all due to bowel loops, etc.

As I said in my previous post, it is my opinion as a fellow parent that you need a 3rd opinion about your son’s diagnosis and treatment.

If you really feel comfortable with your current GI and it’s going to be a major ordeal to go elsewhere you have two alternatives. One is to go to your current GI and insist on a frank discussion of treatment options and why he feels your son’s symptoms do not merit a more aggressive treatment approach.

The second is to request a case consult via records review from someplace like Mayo.

All the best.

 

[Jenn]

Patricia56 - How old was your son and for how long did you double up 6mp and Humira? My son has been on Humira 6 months and the GI wants to add 6mp now and I'm kind of freaking out about it. He was on 6mp alone 2 years ago and it helped some, was mostly a waste of time. How do you go about requesting a case consult? And what clinic specializes in pediatric Crohn's? Thanks!

 

[Patricia56]

My son was on 6MP + Humira and then MTX + HUmira for a total of two years. He has been on MTX about 3 years and was on 6MP for about 2 1/2 years.

The recent research supports using both 6MP or MTX and a biologic (remicade/humira/cimzia) together for the best result. So if you are going to switch to a different biologic I would suggest you talk with your GI about using MTX too.

And/or you could start using MTX now and see if it helps.

You tell you current doctor that you want a 2nd opinion and get his help arranging one. This should be no problem and you can tell him where you want the 2nd opinion if his idea of where to go is not the same as yours. If you know you cannot travel you can tell your local doctor that you would like to discuss having your child's case reviewed at Mayo (or wherever) and can he/she help you arrange that. Mayo, for example, has a dedicated contact center just for physicians making referrals. He/she can contact Mayo and talk directly with them about getting a case consult/review done.

If he does not want to help you set up a 2nd opinion then you can do it directly yourself while you look for a new local (or as local as you can get) ped GI because there is NO reason for your local ped GI to refuse to help you. They should not take it personally and, if their treatment has not been successful they should have already referred you for a 2nd opinion.

Large tertiary care centers (usually they are medical centers affiliated with medical schools) offer a higher level of care than your local hospitals and clinics. Not all tertiary care centers have pediatric IBD centers since these are among the more specialized programs a center can offer. If you are in a rural state in the mid-west, for example, it is likely you will have to go to your State's largest city (or even out of state) to find a pediatric IBD clinic. That is a clinic that is dedicated to diagnosing and treating patients who have IBD.

These programs are often found at hospitals that also do liver transplants.

 

[my little penguin]

Jenn
Cincinnati , chop, boston children's all do 2nd opinion consults.
You call them then they take all if the records and slides etc... And review plus order extra tests ( blood etc) while they are reviewing do when you go you have a meaningful appt. some will scope during your trip and set up appts with other specialists to treat the whole kid( ie psych, nutrition , pain management etc)
It is a long process. We started at the end of June and have a two day appt at the end of August. Guest services sets up lodging at local hotels for discounted rates.
They also talk to your current Gi and will make the recommendations to them if you like.

Good luck
Wish we had done it sooner.

 

[Jenn]

Thanks! I'll continue to think about it. Looks like the nearest pediatric IBD center is Cedar-Sinai in Los Angeles, which wouldn't be difficult. I have often thought about taking into account his entire case, it seems so fragmented right now. I suppose it's really not necessary, I like/trust his GI, I'm just scared about the risks of using both Humira and 6mp at the same time, though realize it's rare and I understand the idea behind blanket coverage. He just doesn't seem bad to me, his protein is a little low, but sed is good, visual look was fine, biopsy of the ulcered areas wasn't good.

 

[Tesscorm]

I so understand, Jen. Stephen's in a similar boat... he feels/looks fine (other than some recent back pain, which may or may not be related) but CRP and Sed are slowly but steadily climbing and now his liver enzymes were also elevated. His last (ped) GI was thinking metho but, as he's in the midst of transferring to an adult GI, didn't want to start treatment on behalf of the GI who will actually be following him. It's so hard to accept any of these meds when your kids 'look' good (even when you know things aren't so great inside) :ymad:

:ghug:

 

[Patricia56]

Best wishes to you all. You are terrific mothers and should do what you feel is best for your child and your family.

Cedars Sinai would be an excellent choice for a 2nd opinion. They are a leading research center in pediatric IBD. UCLA and UC San Diego also have strong IBD programs. Any one of these would provide you with highly experienced diagnostic and treatment teams.

There are a couple advantages to getting a 2nd opinion at a large IBD clinic. They see many more patients than an individual pediatric GI will see in a year and all the patients they see have IBD. That means that they have seen it all and are much more likely to recognize and accurately diagnose rarer presentations or disorders than the gi in private practice.

They also have resources to investigate and network with other specialists like immunologists and radiologists that private practice docs don't have.

I truly understand the "he looks fine and his labs are great" dilemma. My son looks great. His ESR and CrP are perfect. His lymphocytes are up slightly but otherwise, his labs are truly perfect. But his gut is inflamed, he is bleeding and almost certainly has ulceration in his sigmoid colon and rectal vault that is responsible for his rectal bleeding.Which is why his ferritin keeps dropping when we stop supplementing it.

The way I think about it is this: if he had open sores on his skin that were bleeding and swollen,areas of skin that were red and hot to the touch, even if his labs were fine, I would not feel like it was ok to not treat his illness.

Because Crohn's is invisible and rarely painful, it is very easy for us to deny the extent of the illness and the dangers that come with having hot spots like that continuing untreated in an enclosed space inside their body - sometimes for years.

As my understanding of this disease has grown over the course of the last six years I have made my peace with what I now see as the necessity to have my son on these meds.

I did not always feel that way - far from it. And I could be very wrong and my son will be the one to pay the price. I try not to think about that possibility since there is nothing I can do about it right now.

I don't know for sure that he would develop complications like fistulas, abscesses and blockages but his doctors are sure. They see hundreds of IBD patients every year and I am really not in a position to challenge their expertise. And the research literature backs them up as do the anectodal reports of many other parents I have "met" on various boards and doctors waiting rooms.

But I remember very clearly the days when I strongly disagreed with my son's doctors and refused meds on my son's behalf. It wasn't that long ago. So please know - I am not sitting in judgment and do not mean or intend any criticism. I am not trying to guilt you into doing something different.

Pax.

 

[Tesscorm]

Hi Patricia,

I've never believed that you were pushing anything I think we all tend to 'push' (for lack of a better word) what has worked for us (in Stephen's case, EN) only because we have seen success and would like nothing better than for someone else to find success as well.

Personally, even though we're not quite at the metho point yet or aza or biologics, etc., I certainly appreciate learning of others' experience because it's very likely that we will be dealing with some or all of it at some point.

 

[my little penguin]

Just my two cents- so as to SAVE someone else the grief and panic.
If you or your mommy gut is trying to tell you things are not making sense or not adding up then call for a 2nd opinion consult DO not wait and see.

For months I waited and watched since Ds didn't seem that sick he wasn't in the hospital , his labs were normal etc... we have all done the rational thinking of why we don't need to call.
In our case I finally decided after long time to call. One month after starting the 2nd process, DS got worse (vasculitis among other things:ywow and we were told the words most parents fear-"you don't have time to wait for a 2nd opinion at xyz"--- Only a few things scare you more.
The 2nd opinion place is still rushing to get us in quickly but because I waited and waited since Ds didn't seem that bad to our GI or us for that matter..... we have to change meds before we can even get to the 2nd opinion place.

You want to do it when you have time- calling does not mean you don't like your current doc or that you are even changing docs- It just means you are calling to get a fresh set of eyes to see if they have the same point of view.


Even with dedicated 2nd opinion teams the extent of the review takes time and sadly sometimes you don't have that much anymore.

I will say we are ok with our med change and could have spoken with a 2nd opinion GI at our current hospital but didn't feel the need to since not only our GI but the rheumatologist as well were recommending the med change for DS.


Off my soap box for now

 

[Jenn]

Of course, our gut isn't _always_ right. The meds scare the pants off me, but what can you do. I was able to speak with my son's GI last night on the phone for 15 minutes and am very reassured. I will still consider a 2nd opinion/large clinic, but I know I will likely come back to where we are anyway, I just don't like where we are! His GI was trained at UCSD and is part of a group of specialists, but again, it comes from not liking what I am hearing. He's having no bleeding and visually the ulcers weren't bad on the colonoscopy, but he's not in remission, so here we go.

To tie back to the original thread - As I think on it too, he's not as good as he was on Remicade, bouncing off the walls with 'normal/healthy' kid energy. About the only outward sign is his low energy level. Deceptive, I get too used to that level and consider it his personality.

 

[crohnsinct]

Hi Mehita, just getting caught up on everything I missed while away and in our VBS preparing for college fog. How is your son feeling these days? Is his energy back? Did the stomach aches disappear? Has he had any tests recently to give you more info?

I hope things are well!