Update on my teens...

[Livilou]

So, Olivia has hit the 12 week mark with transdermal LDN...I last updated that she was doing well, gaining weight, no CD symptoms. Last night she returned home from a mini vacation with a friend, went to the restroom and informed me that she had bright red blood in her stool. Last week, Liv had an accident overnight that didn't even wake her...this has not happened in years. She still has no pain, and has been completely weaned off of Entocort for almost 2 weeks. Other than that, she looks and feels great. We see GI next week to schedule a scope..hmmm, I'm thinking maybe we should schedule sooner than later?? So, is this the beginning of a flare, is the LDN not working, or maybe she has symptoms because we weaned off the steroid??? I wasn't expecting a miracle from the LDN, but I live everyday just waiting for the other shoe to drop, it just sucks!!!! GI says next up will be Methotrexate. Liv failed 6MP in the past,
and developed a carcinoma while on Humira. I just hate this disease.

My son Trevor, has been on Remicade now for 16 months and tolerating the infusions well. He too had 3 days of rectal bleeding 2 weeks ago. This has happened twice before, since he has been on the Remicade. The bleeding occurs 7-10 days after the infusion?? GI decided to do an MRI earlier this month to see if there is any disease activity and I was thrilled to find out the results. The IBD nurse said there was absolutely no signs of inflammation in his gut! He has pain when he bleeds, so I'm questioning such wonderful MRI results?? Blood work is good too....we see his GI in 2 weeks. I have a feeling he is going to suggest dual therapy, and I just can't wrap my head around that considering his age (19) and the fact that his sister has a history of cancer. I know the risks are low, but way too scary for me to even think about. Uggh...this month should be fun. I hope to get everyone sorted out before the school year begins....I am suddenly feeling like I am being thrusted out of that "happy place" that you gals are always speaking about. Or maybe it's just denial!!! Please stop this rollercoaster ride, I would like to get off! Kim

 

[dannysmom]

Hi ... thanks for the update .. I am sorry that "happy place" is being rocked. I am glad Olivia still has no pain. Since bright red blood is from the end of the bowels ... could entocort be used again? (I am not sure if some entocort is absorbed into your body, or if it is all topical in your bowels) Good luck with your scope and follow up!

 

[ellie]

Just wanted to say I'm thinking of you.. CD at this stage in our family is MY condition, but I have kids just a bit older than yours..
Hang in there, and I'm wishing you and you family all the best


HD

 

[crohnsinct]

UGH! Sorry for your trials. I think we all totally know that "other shoe dropping" feeling all too well.

I can totally relate to you on your son's front. O is on Remicade and continued to bleed, have a bit of inflammation and was anemic after the prednisone was weaned. Our doc wanted to add Methotrexate. We decided on a course of exclusive EN (6 weeks) and it did the trick! Her results all improved. She is 12 and I think it may be harder to get a 19 year old boy to try it but may be worth looking into before adding another med. She stopped EN and had some bouts of diarhea and then bleeding but she "looks" great and says she feels fine. I was sure her numbers were going to come back wonky but they didn't...still all good. So for me I have decided she gets her blood pulled so often (she is on a 5 week Remi schedule) that if something is up they will catch it soon enough and I ignore the blood and occasional diarhea for now...I am in that happy bubble for now.

As for Liv sorry no advice just understanding hugs:ghug: and lots of hope that all turns out to be o.k.. I can't remember but did Liv try EN? Maybe rather than add another drug or switch to a stronger drug try EN with the LDN?

 

[Tesscorm]

Hi Kim,

I'm so sorry you have concerns with both children! It is so very hard and disheartening when this 'rollercoaster' has these sudden drops! Ugghh.

As Olivia has been doing so well, could it be related to her holiday??? I would imagine her routine, activities, diet were different while away. My son rarely has pain but does feel TI area pain whenever he's done long distance running (school curriculum, not a usual activity for him) but never has any pain during his 'usual' activities like hockey, soccer, etc.)?? Our nurse once told me that the GI system takes a long time to heal, and heals from top to bottom, perhaps she does need the entocort just a bit longer. I agree re the scope though, no harm in having it done asap. I so hope these turn out to be just random episodes and she is continuing to heal well.

And, is it possible that Trevor has fissures? I don't know lots about it but do know they can cause pain during BMs, can bleed during BMs, etc. But, not certain if fissures are always external or if they can be internal as well?? I don't think fissures would affect blood results but don't know if they would show on MREs?? I know when my son has periods of constipation, he does end up complaining of 'external' fissure pain. Although we can treat the external fissure a bit, softening his stools with prune juice, etc. seems to help alleviate the pressure on the fissure and help with the actual healing.

Good luck :ghug:

 

[Crohn's Mom]

Thinking of you you Kim and so sorry things aren't going as well as you all deserve

My daughter is 19 as well, and we live on that rollercoaster. She is on Cimzia and it seems to be failing her, so she is on a 3 month taper of Entocort, then they are talking about doubling up the cimiza ~ which quite frankly scares the hell out of me ! The logical part of me understands why they want to do this, as most of the other drugs have failed her also; however, its that MOM part of me that wants to take her and run, run run from any more drugs !

Lots of big virtual hugs coming your way ! I hope things get sorted soon.
Please keep us updated as to how they are both doing .

:ghug::ghug:

 

[Patricia56]

Hi Liilou -

I can imagine your gut dropped right out of your chest when they told you guys it was cancer. I know mine would have done so.

From the reading I have done and hearing about other young CDers, there is nothing scarier than getting a cancer diagnosis when you depend on immune suppressants or biologics to keep your CD at bay.

I don't know exactly what the other opinions are that you got about restarting the biologic but I think I can understand why you are getting confusing and perhaps contradictory recommendations.

There has been a pretty intense effort to track cancers, especially in younger patients, ever since the cluster of liver cancer cases came to everyone's attention a couple years ago. Because there are so few cases it is hard for researchers to come to any solid conclusions about why these kids got cancer. In part that is because there is some evidence that simply having Crohn's puts you at higher risk for cancer, particularly cancer of the colon.

So some of the docs you've consulted may feel this is "just" background noise sort of. That she might have developed this cancer no matter what meds she was on.

I did a Google search using Thyroid Cancer Crohn's Disease and the first article that popped up was "Thyroid Cancer and Crohn’s Disease: Association or
Coincidence?" written in 2006. This is a full text article so you might consider printing it out and taking it with you to talk over.

One of the risk factor cited in this article is exposure to radiation. I assume that like most CDer's she has had CT scans and perhaps Xrays which may have contributed if this information is correct

Women also get this much more frequently than men, about 3:1 ratio.

And there are dietary and genetic factors that have been implicated in the development of this particular cancer.

So I expect that it is a guessing game for the docs given all these known risk factors for developing this particular cancer.

It sounds like you have more than covered the bases on getting other opinions and are left with, ugh, a decision. This might help you during your talks with the docs about treatment plans:

B - benefits?
R- risks?
A- alternative treatments to one that is proposed
N - nothing, what happens if we do nohing
D - decision time.

Finally, thalidomide is a valid treatment for CD although it is very rarely offered due to the risk of birth defects should the woman taking it become pregnant. It is also a big pain for the docs due to an intensive FDA registration and monitoring system. I totally get your rejection of this option and think there are some options still on the table before you get there.

This is pretty long so I'll stop for now.

I am sorry your teens are struggling with CD at a time when their friends and classmates are living life large. I have watched my teen struggle to balance the developmental process of growing up and the reality of having a chronic illness. it's hard to watch but probably harder to do and I wish you and your teens good health starting today.

Patricia

Badger, 16, CD, Methotrexate, Omeprazole, other non-CD meds

 

[DustyKat]

So, Olivia has hit the 12 week mark with transdermal LDN...I last updated that she was doing well, gaining weight, no CD symptoms. Last night she returned home from a mini vacation with a friend, went to the restroom and informed me that she had bright red blood in her stool. Last week, Liv had an accident overnight that didn't even wake her...this has not happened in years. She still has no pain, and has been completely weaned off of Entocort for almost 2 weeks. Other than that, she looks and feels great. We see GI next week to schedule a scope..hmmm, I'm thinking maybe we should schedule sooner than later?? So, is this the beginning of a flare, is the LDN not working, or maybe she has symptoms because we weaned off the steroid??? I wasn't expecting a miracle from the LDN, but I live everyday just waiting for the other shoe to drop, it just sucks!!!! GI says next up will be Methotrexate. Liv failed 6MP in the past,
and developed a carcinoma while on Humira. I just hate this disease.

My son Trevor, has been on Remicade now for 16 months and tolerating the infusions well. He too had 3 days of rectal bleeding 2 weeks ago. This has happened twice before, since he has been on the Remicade. The bleeding occurs 7-10 days after the infusion?? GI decided to do an MRI earlier this month to see if there is any disease activity and I was thrilled to find out the results. The IBD nurse said there was absolutely no signs of inflammation in his gut! He has pain when he bleeds, so I'm questioning such wonderful MRI results?? Blood work is good too....we see his GI in 2 weeks. I have a feeling he is going to suggest dual therapy, and I just can't wrap my head around that considering his age (19) and the fact that his sister has a history of cancer. I know the risks are low, but way too scary for me to even think about. Uggh...this month should be fun. I hope to get everyone sorted out before the school year begins....I am suddenly feeling like I am being thrusted out of that "happy place" that you gals are always speaking about. Or maybe it's just denial!!! Please stop this rollercoaster ride, I would like to get off! Kim

Re Olivia: Has she had bloods done lately?

If they match the looking great and feeling great then perhaps as Tess has suggested it is the mini vacation or I would imagine there is going to be a settling in period from weaning off the steroid and starting the LDN.

Knowing me I would be like a cat on a hot tin roof and would want the scope sooner rather than later! It's good to know you have an appointment with the GI next week and by then you have a little more water under the bridge so it may be a clearer to you what needs to be done by then.

Good luck hun, I so hope Olivia's symptoms are only one or two off's!

Re Trevor: The results surely do sound fab but since they aren't quite matching what you are seeing do you think a scope would be in order just to be on the safe side?

I know that roller coaster ride hun and I never want another ticket for it! :voodoo::voodoo::voodoo: It is less like a ride and more like the blessed twilight zone. :hug:

Thinking of you and your kiddoes, :heart:
Dusty. xxx

 

[Patricia56]

About the MRE results. Badger just had one here in San Francisco. The radiologist noted that the rectal area was not well imaged and a modification in the method should be used next time to get a better picture.

Since the rectal vault and sigmoid colon were very involved in his previous flares and he is having bloody stools I was dismayed to read this in the report.

So it may be that the MRE didn't image this area of his body well and there is actually inflammation. I don't know. Did you get a copy of the final radiology report?

 

[CheerBear12]

Hang in there I'm sure some good news will come soon. So sorry your going through all of this. Your in my thoughts good luck xx

 

[Livilou]

I want to Thank all of you for the well wishes and support/advice/recommendations. It is such a comfort to read your responses...and to know I'm not alone here! It can be quite overwhelming as you all know, and most people just don't get it!
So, I put a call out to Liv's ped. GI and was pleasantly surprised when he returned my call in 20 minutes (I just love this new GI!!!) Anyway, he decided that Liv should restart the Entocort at 6mg, just to cover her until the scope. I was so excited to wean her since she has been on the steroid for almost 10 months...5 steps forward, 10 steps back!
Liv has never been on exclusive EN, just supplementation, however this new MD is willing to get on board if she needs it. Not sure how willing Liv will be because she has been feeling so well, but def. might be an option.
As far as her mini-holiday, she did admit to snacking on Cracker Jacks (caramel covered popcorn) on Wed. evening....hmmm? Other than that, she claims her diet was within her norm and she was very compliant with her meds/supplements. From past experience with Liv, usually bleeding signifies that her meds are no longer effective; scopes show ulceration and inflammation. I'm hoping and praying that this time will be different (denial is a wonderful thing, huh?)
@Crohn'sMom....Cimzia is a drug we may consider down the road, after exhausting all other options. Surprisingly, our former GI was not comfortable prescribing it for a 16 year old. Liv had other serious issues with Humira (skin lesions, ect...) Of course I would love to dodge all biologics after what she has been through, but we shall see. I am very concerned about her quality of life with the CD... I have seen that child get very sick..sometimes that scares me more than the cancer risk! I hope things get sorted out for your daughter...BTW she is beautiful!
@Patricia56...several of the docs that we visited in consult do agree that Liv would have developed thyroid cancer regardless of her CD treatment; actually the surgeon who performed her thyroidectomy said that she sees mostly hormonal women/girls with this type of carcinoma. She attributes the growth to hormone surges, as in pregnant women and maturing teens- physically, Liv was a late bloomer due to failure to thrive, secondary to her CD. And yes, she has had many exposures to CT scans/ upper GI's over the years, so that is another possiblity. We consulted with some top notch CD specialists-including the group at Mt. Sinai in NYC and thyroid cancer specialists at Sloan-Kettering..they really had no answers for us, so frustrating!!! Actually, a top doc at Mt. Sinai recommended thalidomide, however, he said with all the red tape we have to cut through just to get the med dispensed/monthly pregnancy tests, it's a huge hassel-and I'm not sure about side effects of that drug...my pharmacist said they could be severe.
As far as my son's MRE results-I have not received the report yet, as we were away last week on vacation. Interesting facts that you bring up...I agree, there has got to be some low inflammation, or perhaps internal fissures as Tesscorm suggested. I need to jot all this down before my son's appointment so I don't forget to ask!!! My head spins trying to keep everything straight, especially when dealing with 2 different doctors!
@ Dusty...Liv's labs were perfect...even her anemia was resolved??? Just don't know..hopefully it's just a passing thing, although, still so concerning. Thanks for your well wishes and support! Thank You all, you really are a special bunch!! I will keep you updated!!! Kim

 

[crohnsinct]

I am not saying the bleeding isn't anything to worry about BUT O always bled and her bleeding used to be associated with elevated levels. So over the past couple of weeks I called re: bleeding and the doc and his nurse were interested but not freaked. They even pulled a few extra tests at her infusion to be on the safe side and everything was fine. Doc says some kids just bleed from time to time. After her infusion the blood dwindled which only puzzled me more because if it wasn't due to inflammation why did it go away after infusion? But my point is just to encourage you that maybe just maybe everything will be fine.

Your Lon Gisland friend Kim and her ct Livilou are pulling for you guys!

 

[Livilou]

Thanks Kim....I'm hoping that everything will be fine too. I have a girlfriend with UC who has refused traditional treatments, and she bleeds every single day for the past 2 years! I have warned her about going untreated and the risks involved, but she doesn't want to hear it.
My son's bleeding usually occurs after a visit to Applebee's...mozzarella sticks are not kind to his gut, will he ever learn?? Just weird how it has happened immediately after his infusions, everytime! But he does complain of abdominal pain during these episodes.

Thank You my Lon Gisland friend! So happy to hear that your Livilou is felling good! Kim

 

[Patricia56]

Popcorn is on our ped GI's "always off limits" list of foods. There aren't many on it but that one is at the head of the list. So it may be the popcorn in which case it will probably go away quickly.

Please don't take this as casting doubt on the docs decision on entocort but 10 months is a long time for her to have been on it.

Has she had a DXA scan recently? If not, I would ask for one since entocort, while not as bad as prednisone, has some of the same effects on growth and bone quality as prednisone. Entocort is a much more powerful steroid but it is topical rather than systemic. But like most things that you put on your skin, some of it gets into your system. With entocort, up to 25% has been documented to be bioavailable and it definitely causes growth delays in children with CD.

 

[Sascot]

Hi, just been reading through your post - I have been away so missed quite a bit! Amazing a GI that actually phoned back - and in 20 mins, I see why you like him!! Sorry to hear about the bleeding - if it was just a little bit of blood maybe it was the popcorn? I know what it's like wanting to stay in the happy bubble, hopefully this is just a hiccup. :thumleft: It took me 4 days after coming back from holiday to phone the IBD nurse to arrange Andrew's check up/blood test - it had been so nice being away in the sunshine - no hospitals, docs, etc. Oh well, reality here we come!

 

[Livilou]

Hi Everyone! @Sascot...yes,facing reality and leaving the happy bubble is tough! I'm glad that you had a wonderful holiday with your family and I'm praying that Andrew's labs are fabulous! Good Luck!
Hi Patricia56..Thanks for all your info, I really appreciate your advice and you seem to know your stuff! So happy you are here with us and I will def. be hunting you down with questions! Ahhh, popcorn! Olivia has been avoiding it since diagnosis at age 10, so I was surprised she took a risk..I hope it was just the popcorn; she had 4-5 bloody stools over the past 36 hours, so we will see how today goes. You know, I was losing sleep last night thinking about the MD's decision to restart the Entocort. Originally, Liv was prescribed the drug (by our former ped. GI) as an umbrella to cover her after we discontinued the Humira and she was recieving treatment for her cancer. I was anxious to wean her when we started LDN, but I wanted to wait to give LDN time to kick in.
Interestingly, when we were on the hunt for a new GI (old GI and I no longer saw eye to eye, he just would not "hear" me and frankly, I think he was too uncomfortable to continue caring for my child with her multiple issues). Another MD who we consulted with felt it was too risky to restart biologics given her age(he is involved in research with the drug trials). When i questioned him about how he planned on treating my daughter(he felt methotrexate was too risky as well?) he insisted she was already on treatment for her CD, referring to the fact that she was on Entocort! He felt it was safer to keep her on long-term steroid therapy..really!!!?? I was not comfortable with that, onto the next!
Liv has not had DXA/bone scan since age 11 (back in the prednisone days), but I agree with you, not crazy about continuing with Entocort. Do you think I could start weaning her back down to 3mg (keep her at 6mg for a week)...we see MD on wed. Apparently, LDN works better with low doses of steroid...darn, I was so happy to wean her off! I wanted to drop her to 3mg today, but I don't want to burn bridges with this new doc..he has been wonderful. Actually, he is not thrilled about the Entocort either and prefers her off of the steroid-he feels it probably isn't doing much for her? We shall see..will keep you updated. Thanks again Patricia56! Kim

 

[Patricia56]

You are asking me for medical advice and I am not a doc so please be clear that I am answering you as just another mom who is trying to figure out what is best for my kid without knowing for sure what the doc would say.

As a mom, it seems to me that if you have a child who is actively bleeding (which would appear to imply the LDN is not working) you do not want to take away steroid therapy without talking to doc. In our experience weaning off any steroid needs to be done slowly for many diff reasons and it's probably better to just wait.

I would probably be thinking...waiting a few days to see GI is not going to make a big diff in terms of her steroid exposure (given it's Entocort) so I will just wait and see what happens. Don't rock the boat just in case it was the popcorn and she will get better in the next couple days.

If I was really, really concerned I would probably call the GI on call or wait until office hours Monday and call the office about it.

DXA scan is definitely in order if your insurance will cover/doc will order/you can afford it. I would add it to your list of things for next appt.

Hope she is better today.