Time to get scoped?

[lenny]

My son is 17. He was diagnosed in March of 13' and then was in remission for a year. His last FCP came back at 500.

His doctor has a wait and see attitude and I want to get a second opinion, but my son doesn't (right now). He doesn't want this disease or anything to do with it. It's hard to talk to him about it.

I think my son should have a colonoscopy, so we can see what's going on in there..

Good idea?? If he can be talked into it..

His first and last scope was in March of 13".

 

[Orchid]

Second opinion, because 500 is skyhigh and CD in someone that young has long term growth consequences even at that age.

 

[Catherine]

Where is your son's Crohn's located?

I would expect the FCP to be much lower if the Crohn's was well controlled.

 

[lenny]

His Crohn's was found in his small and large intestine and unfortunately he's currently "flaring a little" according to his doctor.

 

[Orchid]

"Flaring a little" is like saying a boat is "leaking a little", yes it's small now but if you don't fix that shit now you're going to end up a diver's curiosity. Talk to someone who takes his disease more seriously. Also FCP at 500 is not "a little", that's more than triple the adolescent norm.

 

[crohnsinct]

What is the doc doing about the "little flare"? Did he increase meds? Hitting it with a short burst of steroids? If he is attacking the flare, I would be inclined to wait on the scope and see if you can get things under control. Then if FC comes down and your son is feeling well go back to the docs original scope schedule. With an FC of 500 and flare symptoms, the doc may be thinking scopes will only confirm what I already know and looking at it probably won't change course of treatment. If you can't get control with treatment, I would be inclined to have someone get in there and look with scopes and small bowel imaging.

Now if doc is not treating said flare, see another doc! Out of curiosity, is your son being treated by a ped GI or adult GI? Ped GI's tend to have less tolerance for any inflammation.

FWIW - my daughter's doc scopes one year out from achieving clinical remission, to confirm remission because like us he knows disease could be simmering even when all looks good on the outside. Then every 3-5 years. That said, my daughter was dx'd 2 1/2 years ago and he still hasn't scoped her but things have been good.

 

[Clash]

It has worked out that my son has been scoped each year since diagnosis. During a symptomatic flare that includes pain, fevers, mouth ulcers his FC was 1700. During an asymptomatic time with the colonoscopy showing only simmering inflammation his FC was 300.

I agree that if the treatment is going to change to try and treat this flare then a colonoscopy may not be necessary but if treatment isn't going to change a second opinion with colonoscopy is probably in order.

 

[Sascot]

I agree it's time for a second opinion or at least another scope. It must be hard when your son doesn't want to do anything. If we were getting calprotectin levels increasing our GI said we would have scopes and then decision on what to change for meds. Hope you manage to get something sorted before inflammation increases too much

 

[Patricia56]

MRE would be my choice. A scope could flare things up even worse and tell you very little about what's going on in the small intestines. An MRE covers both = at least my son's ped GI seems to feel it is adequate for checking out the colon as well as the small bowel for minor inflammation. When he was very sick earlier this year they did both.

Of course he doesn't want to talk about it or think about. We're talking poop here. It is embarrassing and he is a teen when everything is embarrassing pretty much. He's supposed to be having fun, being free to do what he wants and go where he wants, to celebrate his senior year of high school unimpeded by needing to find a bathroom every 5 minutes. I expect none of his friends know what's wrong and he gets up and leaves the room when you start to talk.

As the parent of an 18 year old boy I will be honest with you. He may have to get really, really sick before he's able to face the reality of having CD. And there's pretty much nothing you can do about it. You can talk until you're blue in the face, cry, fret, nag - probably won't make a difference.

According to our Ped GI, even teens who have been diagnosed for years usually go off (or try to go off) their meds sometime during their teen years. Eventually they get sick (hopefully not too sick) and have to go back on meds. It is a time of rebellion and setting their own boundaries and that's the appropriate developmental thing for them to be doing.

My best suggestion is that you try to calmly talk with him when you (or his father) are in the middle of a physical activity like shooting hoops or going for a walk. Make small talk then bring it up in a very non-threatening way. No telling him what to do just tell him you're concerned, don't want to see him get really sick, know that because he's 17 it's pretty much his decision about what to do and you're available to talk it over when he's ready. You may want to warn him that if he gets really sick and has to go in the hospital that you will be making treatment decisions together with him and the ped GI.

Best of luck. It's a tough time to be a mom and to be a kid with CD. You'll get through it together and if he gets really sick, well there's treatment that will get him well - whether he likes the choices at that point is pretty much irrelevant. When they start talking about doing transfusions because he's had days of bloody diarrhea he will get it.

 

[Orchid]

The fact enough children contract Crohn's Disease for them to know these behavior patterns is rather depressing.

 

[Patricia56]

Do you have an appointment with the GI? If not, I would make one soon and talk face to face with your son taking the lead if possible. During the appointment you can prime the pump some (for example ask your son if he wanted to know more about X treatment); if possible I would let the GI know in advance that your son is struggling to accept his diagnosis. Hopefully the GI will have some experience with this and be able to help with that along with explaining treatment options.

 

[Patricia56]

I've heard there's at lesat one chat room for teens with IBD but I would have to do a search to find the info. If he's like my son, yours is not going to want anything to do with it so I'll leave it to you to suggest to your son and see if he looks for the info.

 

[AZMOM]

Orchid - Not to hijack lenny's thread but just wanted to say that I clicked your link to the Dessa song on You Tube. LOVE! Haven't heard anything new I liked in awhile.

Lenny - I don't envy you this age. It's tough. I wouldn't be happy with 500. Like Patricia said, maybe an MRE and short course of steroids? I would ask the doc if he thinks that level is acceptable????

Hugs,

J.

 

[lenny]

I appreciate all of the insight and information you all have given me. My son has been feeling better and his appetite has increased (at least there's that). The doc offered a short course in steroids or een (again) but my son wants neither. Going 6 weeks without food was traumatic for him and he can't bring himself to do that again and he knows about the dangers of steroids..
When we see the doctor, he always talks to my son alone for a lot of the visit and I'm afraid that during that time, he isn't hearing the truth as my son often says he is fine, when he is NOT and I feel like the doc WANTS to hear he's fine, so Mom is just being "negative". My husband and son don't have a great relationship, so I'm (sadly) his best hope, but he doesn't have 100% confidence in my judgement. And he is so sad and angry that he's sick. (He is seeing a therapist) The doc just seems slow moving..he didn't react to the inflamation with any urgengy. His "plan" thus far is to speak to my son this weekend, see what he wants to do.

 

[Patricia56]

Is this a pediatric GI or an adult GI?

 

[lenny]

Pediatric.

 

[Patricia56]

Did your son ask you to stay out during treatment discussions? If not then I would ask him if it's OK for you to sit in on the visit and then just do it. You don't have to be making the decisions but it's still your role in his life to offer guidance and to be a sounding board and if there was ever a time that a teen needed that it's when faced with a health crisis.

IF the doctor insists you leave the room I would point out that your son wants you there, as is his right. If necessary I would ask him why he feels your son should be without your support when making important, potentially life-changing decisions about his health and then let the doc make his case for excluding you. Then it will be up to your son. Hopefully the GI will have the sense to back down and not put your son in the difficult position of asking you to leave.

I am surprised that the ped gi has excluded you so much unless it was at your son's request. If you end up being excluded then I would ask the GI how best to provide your observations of your son's behavior and symptoms and see what he says. If he doesn't want your input at all well I think you need to find another doctor while you still have control over who he sees because this one is not a wise doc.

 

[my little penguin]

One thing I do although mine is a lot younger - is to provide to typed sheets .
One has all meds doses start dates, all conditions and all failed or pred meds with stop dates .
Next page has about 4 bullet points with main concerns and questions.
That way the Gi or Rheumo can know what I want to cover but also get input from DS -
Some docs want the kids more involved so this makes sure my concerns are heard .

Also I phone and ask to speak to the Gi about xyz plan since I was confused etc...
This way you talk directly to the Gi not the nurse

 

[lenny]

I spoke with my son's doctor today and I feel a little better. We have a "plan". My son is going to get his labs done again and if he still has inflamation, he will do a short course of steroids and begin taking a stronger drug. The doc is recommending Methotrexate.

The dr surprised me by saying that he'd originally wanted to put my son on Remicade, but knew that wasn't what I wanted. (Now, he doesn't want to and told me that I saved my son from being put on Remicade). I think he gave me too much rope, especially since I kept questioning how my son was doing. He was the positive one, brushing over my son's symptoms, saying things like, "that's just part of the disease, okay?" I felt like at every office visit, I wanted to talk about what wasn't going well and he wanted to focus on what was, like my son's height and weight and the fact that he "looked really good" etc.

What's the best way to go about getting a second opinion?
And what does everyone think about the short course of steroids and Methotrexate combo?
Or, would it be better to avoid the steroids and do EEN again (if my son is willing).

Thank You!!

 

[Clash]

My son would opt for EEN over steroids because he hated the pred side effects. MTX is a med that my son has been on in pill form then in injection form. He gives himself the shot, in his stomach, once a week. Due to mtx being an anti folate, he takes px folic acid everyday. Some people experience some side effects with MTX such as nausea, headaches and fatigue but my son never has.

My little penguin will proabaly be by shortly with ideas on second opinions. I think she has gotten second opinions but also had her son's records sent to top ped IBD centers to be reviewed. She has great info in that area.

 

[my little penguin]

DS has had two second opinons and one record review.
Just call the second opinon place - Ibd center or gi dept most have a patient coordinator .
They will tell you what is needed .
Some have you sign a release and they get the info others have you get it.
Your hospital will have a medical records dept . Most require a form to be filled out electronically or paper to release all the records to the second place .
Pathology dept would have all biopsy slides - you call them seperate ly to have them forwarded. Radiology can be called and they will burn a cd with all images ( mre pill cam X-rays etc...).
Make sure medical records gives you all lab work , doctors summary and pathology /radiology reports .

Once you call the 2nd opinion place they can give you the expected wait time.
It can take weeks to get all the info they need and some have a 2-4 month wait time after they get all the records .

For example I called about our first second opinon in July .
DS was seen in Nov. Second time we called on June . He was seen at the end of August -less paper work that time and he had a dx.

So it depends .

Look for bigger places with lots of Ibd experience .

Call more than one just to get an idea .
Keep in mind most will not transfer your care there if they are more than 2-3 hours away ..but not all.

Our second opinons were to confirm dx ( DS presents atypically ) and confirm nothing else was going on... ( turns out DS has arthritis as well but it was ver low in severity at the time so it muddied the waters ).

 

[Sascot]

At least you do have a plan. Methotrexate would be our next med to try so that seems fairly standard. The EN takes a lot of commitment, if he can't manage then a short course of Pred would be good. No idea on second opinions, sorry

 

[lenny]

My son would opt for EEN over steroids because he hated the pred side effects. MTX is a med that my son has been on in pill form then in injection form. He gives himself the shot, in his stomach, once a week. Due to mtx being an anti folate, he takes px folic acid everyday. Some people experience some side effects with MTX such as nausea, headaches and fatigue but my son never has.

My little penguin will proabaly be by shortly with ideas on second opinions. I think she has gotten second opinions but also had her son's records sent to top ped IBD centers to be reviewed. She has great info in that area.

My son did a 3 day course of steroids (followed by 6 weeks of EEN) in 2013 when he was diagnosed and he didn't have any negative side effects that we know of. My husband took Methotrexate for about a decade for RA.

As for the second opinion, my son's doc is recommending someone. That seems weird to me. Is it?

 

[my little penguin]

Typically you do not get side effects from steriod bursts ( 1-5 days).
Most have to do steriods for at least two weeks or months at the higher dose (20-40mg) and then slowly taper at 5 mg per week .
This tends to cause the moon face , acne , mood swings , water retention , hunger, diabetes(later in life), brittle bones( later in life), growth failure ( while taking and months after) etc......,

DS had done many steriod bursts for asthma -this is different for Ibd.


As far as recommending someone - docs sometimes do this - just make sure its at a different hospital otherwise it is not truly a fresh set of eyes .

Good luck

 

[Momtotwo]

Our GI recommended some doctors at Boston Children's. He has professional relationships with them due to other patients getting care. I had the same thoughts I assume you are having- wondering if he is recommending someone who was apt to agree with his approach? But I felt confident that BCH is in the business of providing good care to patients with IBD rather than merely agreeing with other doctors. What part of the country do you live in? Maybe people visit this board and someone might know a doctor in your area. I was most comfortable traveling to see a dr who specializes in IBD rather than merely seeing another ped GI who treats a range of GI disorders.
Again, I cannot stress this enough and I don't say it to be alarming, but I disturbed by your doctor's wait and see approach and not quite sure what it is he is waiting for?

If you answered this previously, I apologize for asking again..but has your son had an MRE to check for small bowel involvement?

 

[Momtotwo]

Oh, I read the post lower down in the thread and see that dr has a plan now. Still think a 2nd opinion is worth your time.

 

[lenny]

We have our apt with the new doc. It is at the same Children's hospital, though. Only good choice around. They say they rate above The Mayo Clinic for treating children with Crohn's. Our apt is in 2 weeks. There is a good chance we may switch docs, as I find our current one hard to communicate with, though he seems like a very nice man.

I have been waiting 2 days for my son to poop, so we can do another FCP...if inflamation is still present, my son is prepared to drink the Peptamen again. Poor boy.

So, just so I know what to expect, 6 weeks of een while MTX is started? Anything else I should know? Last time my son did een without eating or drinking anything, this time I would love for him to have lollys etc. What can he safely consume?

 

[kimmidwife]

Usually they allow lolly pops, gum and some docs allow clear broth and sprite.

 

[Sascot]

My son was allowed 7up (not sugar free), chewing gum and Fox's glacier mint sweets. Good luck for the appointment