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Sibling being evaluated

Yeah, that's what I am thinking Clash...inflammation = switch to injection for absorption and to get it to work faster. She does have an issue with the shots in that the only place there is an amount of fat to grab is her stomach and the shots leave her sore and black and blue. Wouldn't normally be an issue except she is a catcher on a softball team and the ball hits her right at the injection site.

Nausea, fatigue, feeling like a truck hit her all ticked up a notch right around the same time as the switch to oral so was thinking it was the Mtx but with the increased FC result and now bad joint pain not sure what is caused by what anymore. Gotta love this disease...everything clear as mud!
 
Sorry to hear the test results. Have either of your kids used Entocort in the past? E's been on it for 4 months now, and we haven't noticed any side effects from it--it's really different from Prednisone. Of course, I'm also not sure how effective it's been for her, since she's on so many other treatments. It is supposed to be good for inflammation in the terminal ileum, though. Hope that whatever treatment you decide on works well.
 
Just the researcher in me (if it's someone else's kid that is doing the work) but I would be awfully curious if a second round of EEN would pull that F. Cal down to where it was the first time she did it. Because there is anecdotal evidence that it doesn't work as well after the first round and I wonder if that is really a fact.

I can't imagine her wanting to do it again, but I don't know her.

Hugs your way. Sorry things are going downhill. I hope it's a quick return to health for her.
 
OMGosh Pilgrim! That is almost verbatim what I said to my husband. I said I almost want to do the EEN/diet thing again as a science experiment. But yeah, my kid can't be an experiment can she?

I just feel like this is more the Mtx not holding things and we are wasting our time with this interim step but maybe he knows he needs it in order for insurance to approve a move o Remicade.

Just frustrated that the FC result left me with more questions than answers.

PDX - no Entocort so far here. O used Prednisone but for T it has always been Entocort suggested given the TI involvement. I know Entocort has less systemic involvement but given the liver issues in our family and her use of Mtx and all I just don't know. Also, would like to save steroids for a later date. Just like EEN they work best the first time and successive times maybe not so much.
 
G.I. says no need to go back to injections.

So in bubble speak that means, "inflammation not that bad she can stay on oral".

Nice how that works eh?

Good thing it is summer...lots of sand for me to play with.
 
IMO enough is enough
Numbers are tending the wrong way
You have more than two points
Mtx has reached maximum effectiveness 8-12 weeks
So this is just a bandaid on a large gapping wound
It will help for a bit but wouldn't think it's a long term fix

Can you call the GI and ask to speak to him?
I would want to know exactly why there isn't a move to remicade
Since she was just dx abd never got to the sweet spot for more than a few weeks which is not remission kwim
 
Gotta love the chicken...calls em as she sees em. I tend to agree chickie.

I did write an email with my thoughts and questions unfortunately he only addressed the how many weeks of EEN one and ignored the rest:voodoo:

I am calling tomorrow and asking that we have a real conversation and if I have to drag up there for an appointment to do it so be it.

I have been reading more on budesonide and it doesn't appear to be to terribly effective. Plus many use it for a very long time...6 months or more. I am all for a steroid but would rather a short prednisone burst with a taper than another 6 months of a drug only to find out my daughter needs to escalate to biologics anyway.

Too many questions to rely on a two liner from the nurse. Need to have a conversation.
 
Yep that was my research
Plus it's betting on inflammation in only one spot
Crohns is sneaking
Could be in small bowel but slowly festering so not showing thickening on mre yet .....
Glad your calling
 
Yeah, I have to say that budesonide was only added for my daughter to help tide her over (along with EEN) until the Remicade/MTX therapy could kick in. I think you're right to ask about Remicade now.
 
How many weeks of EEN?

I think the numbers look wrong, too. I would hope the laissez-faire attitude is part of a bigger plan on the part of the GI.
 

Maya142

Moderator
Staff member
M did very well on entocort, though she was on Remicade and MTX at the time, so it probably just gave her the boost she needed. Might be worth trying because if it works, it sure beats pred, even just in terms of side effects.
My daughter liked it better than prednisone even though it did nothing for her joints!

In terms of the MTX shot,have you asked the doctor for a smaller needle? My girls both got tiny tiny needles (so thin we were worried about them breaking) and that helped with bruising. Both my girls are really thin too.

Hope you can get T feeling bette soon.
 
Pilgrim: 4-6 weeks.

Gave her the news today and she said she knew the results were going to be bad based on how she was feeling. She really wanted to go to Remicade also. She isn't thrilled with EEN given some camps she is going to. But also not thrilled with doing very long tern Entocort use.

I will wait to talk with GI before any decisions.

Maya: we had tiny needles at first and then pharmacy changed to mail order and then suddenly bigger. I asked them about it but they swore they didn't change the size.
 

Tesscorm

Moderator
Staff member
Ugh, so tough to make these decisions with so many unknowns! :ymad:

I think a real conversation with GI would help. I would ask what he's hoping to see by going with EEN? Does he really feel mtx just needs more time or a boost? Why?, ie mtx should be therapeutic by now, what will another EEN or steroid course do this time that it didn't do before?
 

Maya142

Moderator
Staff member
I think we had 30 gauge needles...but I can check when we get home. If you do try injections again I would ask the GI or a nurse. Often they have tips and tricks to make things easier. M's rheumatologist was the one who prescribed smaller needles because she suddenly got nervous about injecting herself.
 
Sorry to hear she is struggling. It does seem odd that the GI is happy to continue oral methotrexate when it's clearly not working. Hard choice between the EN and Entocort, it's a pity it isn't easier for these poor kids to deal with not eating for so long. Hope you get some solid answers from the GI and a good plan
 
O.K. spoke with GI. The issue is, it is the first 5 months. She was mild at dx. It would be hard to get insurance approval if we went to Remicade at this point. If we go Remicade no turning back. He really wants to go in knowing we tried everything we could first.

So T wants Entocort. She feels like she did EEN and the inflammation came back anyway. So what would make us think the same thing will get different results? I would add that subsequent uses of EEN are not always as effective and wonder if we tried EEN and inflammation returned would we then have to try steroids and would this just delay a change in therapy again?

Doc has agreed to limit the Entocort to 6 weeks and then reassess. This combined with the lessened systemic affect of Entocort got my buy in.

So I bit the bullet and emailed the nurse today and T will start tonight. Who knows...it just might work.

Too early for wine right now so I will eat a sleeve of cookies! See you in 6weeks or so.
 
I hope it is all she needs to give her a jump start. It makes sense. Good thing you asked.

Hug button times spastic pressing.
 
So I never updated the FCP thread I had going about our appeal but it was denied. I am moving to second level but fully expect it to be denied as well. The doc filed a separate appeal. That decision is due any day now.

Here's the thing. Clinical Labs charged me $118. I moved over to Quest because they are faster and they charged me $240! I am totally going to call Labcorp and see what they charge. This is ridiculous. Oh yeah and I did call Quest and ask for an adjustment given my insurance doesn't cover it and they said no way!
 
Ours with lab Corp used to be 240.00 but it seems like the last time it was 114.00 or 148.00. The only time ours has been covered is when he was in-hospital oddly enough.
 
Hmmm Frequent Pooper Program maybe?

Yeah, the party line with most insurance is that they cover it as a diagnostic tool but as a monitoring tool once diagnosed it has no clinical significance. Interesting that it was covered in patient...maybe that got confused...run with it!

So Labcorp also charges $240. Looks like Clinical is the slowest but cheapest! Since it looks like T will have this test every 8 weeks or so, think I will go with Clinical.
 
Hey y'all. So T completed her 6 weeks of Entocort about two weeks ago. GI requested a fecal cal before tapering. Result was 550. A reduction of only 140points.

GI is on vacation but he told nurse o.k. to taper down to 6 mg of Entocort and that we had stabilized but there is still some inflammation. He said he would review the information when he returns.

Not quite sure what his thinking here is. Pretty clear Mtx alone doesn't work, 6 weeks at full strength Entocort only stabilized things. Seems a reduction won't help matters. Maybe he is thinking we are moving to biologics and Entocort doesn't help much so mine as well start to get off it...maybe he will add Prednisone while transitioning to biologic?

She has had some symptoms, abdo pain, joint pain, nausea, fatigue, and some weight loss. At this point we are 8 months out from dx and only a brief time of maybe 2-4 weeks of relief with a normal FC...Yeah I am getting antsy and yeah I know..first year is the hardest.

I think he gets back next week so plenty of time to play our favorite game of outguess the GI!
 
Yeah, it seems like it's time to try something else. Hope your GI is on the same page as you when he returns.
 
Instead of waiting for his opinion.... he should be waiting for yours.:)

I'm kind of interested what his logic is. I hope you here soon!
 

DustyKat

Super Moderator
It surely does sound like a move to biologics is fast becoming your girl’s only option cic. :ghug:

*Sigh*...Oh to live in a perfect world where disease severity matched both the level of treatment required and it’s response to it! Hate it that disease is classified as mild but it doesn’t respond to the smaller guns. :(

Thinking of you. :heart:

Dusty. xxx
 

Jmrogers4

Moderator
Same boat here, "well I guess he did need biologics" after his response and remission from biologics and maybe the 9" growth spurt
 
I lost the game! GI says either go back on EEN or continue with Entocort at 6mg for another two months and retest fcp (because it did help some).

Haven't asked T what she prefers. I am trying to figure out my preference first. EEN heals her faster and will put back on the weight she lost but we are already on Entocort so mine as well continue. Plus little to no confidence Entocort will work so thinking we might move on faster if we stay on Entocort. Thinking if we do EEN and she comes out normal then have to wait another 8 weeks for the trend back up and another 8 weeks to see if it goes higher and then maybe even another full on try of steroids. UGH!
 

my little penguin

Moderator
Staff member
So wish it wasn't so....
"Stable" as in no bloody diarrhea or structure or abycess kids get no respect
If she only has simmering inflammation and constipation /mild weight loss
The docs don't see it as an emergency so figure they can ride it out with less risky things
Btdt
Can you ask about the diet Ds is on?
It's suppose to induce remission ( not why he tried it ) and let's get eat albeit limited diet for 6 weeks then... Less limited diet after 12 weeks

I know I would prefer biologics but ....
If you don't get anywhere

Also try the Rheumo side of things
 
Yeah...her most concerning symptom to me is stomach pain and she hasn't had that for a few weeks.

Currently of most concern to me is her weight loss. Down 5 pounds since 8/6. But like MLP says, guess that doesn't ring any alarms. She does also have various joints hurting at different times so will definitely get in to a rheumy on that one.

I think we are going to stay the course with the steroids. I want to give them the best chance to work and do a complete course. I feel if we jump ship now we will always wonder what if we stayed on them.

Just don't get the complacency with a 550 FCP and the thinking that reduced Entocort is going to help much...but doc has more experience so maybe....

She isn't in distress right now so I will play nicely but let things change and I will be on their door step in a NY minute!

We have an appointment on 9/22 so I will pick his brains to get his thinking then. At our last appointment when she was at 250 he did say if repeat came up like 2000 we would change treatment so guess in his eyes 550 isn't so bad.
 
Sorry to hear. Sometimes it can be so frustrating when we know better then the doctors! 😝
LOL!
Really I think continuing with the steroids is a good idea but has he said what he is thinking in the long run? What is he thinking for maintenance medicine?
 
Know better than the doctors:rof:

She is already on Mtx so I am guessing that is the plan...steroids to get her back down, treating this like a flare of sorts and then continue mtx to hold her there. Problem is I don't see this as a flare considering she was only at a low fc with EEN. I think it is more likely mtx can't hold her. But giving him the benefit of the doubt perhaps we transitioned to food too quickly and these 4 months on steroids will get her to a better place and mtx will be able to take over from there. Bahahahaha!
 
Hmm. I asked him about ldn years ago for my older daughter and he was against it but it has been off my radar recently. Since he isn't changing therapy my guess is the answer would be no but I will keep it in mind should we change therapy. Thanks for the reminder
 
So T had her check in with GI today.

We are fighting to keep weight on her. At one point she lost all the weight she has gained but she s back to where she was in June. She hasn't grown at all. She has had lots of joint issues, some stomach, some diarrhea, her period has stopped (again) and nausea. However nothing very dramatic. She hardly complains and only missed one day of school.

He said he isn't happy at all. He noticed circles under her eyes and that she was pale. Glad to hear he is now on board!

He said that there was no sense in pulling another FC or scoping because we know what both will tell us and he doubts anything has changed from diagnosis.

He said he is loathe to put her on Remicade. Before you ask...I didn't ask why...guess with O on it I really didn't want to know why. However, he said we are in an acute situation and we have to manage the inflammation. Oh ya think? He went on to say that if she was more dramatic having 5-6 bloody bm's a day, losing lots of weight he would just jump to biologics but she isn't so either get better or worse! I just don't get it! So many other kids put on biologics with much less symptoms...why the hesitation? Oh yeah...I don't want to know! Maybe it is jut the promise of this new drug that has him holding out.

He asked her if she would do another 4-6 weeks of EEN. Shockingly she said sure. Then he said we could do 80/20 for a much longer time than we did last time with a very specific diet. He went on to say that he is just trying to get her inflammation down and keep her there until he can get her into a clinical trial. The two trials he is looking at for her are Entyvio peds and another oral drug that is not systemic at all...it only works in the gut. He expects those trials to happen in 2016 so he asked her if she could be patient and do EEN/food options until the trials happen or inflammation becomes too out of control that we have to escalate to biologics. There is also a possibility that we may hit on an EEN/food option that will work...you never know.

So she will start EEN in about a week and a half...after her birthday. She will be drinking again.

I forgot to ask how we are going to wean Entocort and if she will continue Mtx. I will email the nurse later. Just licking my wounds right now.
 
She will be drinking again.
Haha and so will I btw!

So just so you all don't think I am crazy...yes I have a lot of questions....

There are risks with biologics but surely there are risks with the trial...sure not systemic but what if there is some crazy gut related risk?

What if she is one of the kids to not get the drug?

What if the drug has the same success as Mtx and only 40% respond and she is just a non responder? Mtx was a success but not for her. Entocort was a success but not for her.

I know I really should have pushed him on the hesitation with biologics but with one kid already on them I really don't think I want to know. I will ask at O's appointment in Oct.

Also going to pursue a second opinion...just a matter of whether or not to go north or south.
 
I'm sorry that your daughter is still dealing with so many symptoms, and I think you're right to get a second opinion. I'd hesitate to have my daughter join a clinical trial if I hadn't run out of the more tested options first, including Remicade and Humira.

Your daughter is one tough kid, by the way! That's so impressive that she hasn't complained much about her symptoms, and that she was willing to go back on EEN.
 
Her symptoms don't sound good at all. Lots of kids with no frequent bloody BM's. I'd be freaking out over the slow down in growth.

You're there. Just empathizing.
 

my little penguin

Moderator
Staff member
:hug:
I hate non plans
I would ask specifically for his reasoning for no biologics in her case.
He has his reasons but you need to know so you can make an informed decision.
Why are they ok if she is worse but not ok now even though she is still bad enough to need steroids and een which is basically double steroids btw when you think of it .
Plus didn't her numbers go up when she went from een to 80/20 last time which is why the mtx was added in the first place since she couldn't do diet alone

Sorry she has to deal with this and you as well
I would have a ton of questions
 

Tesscorm

Moderator
Staff member
Totally understand not wanting the details on why not the remicade! :( Bad enough to go through that turmoil once, but to have it put in front of you again... ugh! :hug:

Also, very good questions re the trials. I'm glad you'll have the opportunity to speak with him again soon. It'll give you some time to mull over all your questions.

Whether or not she'll respond to the drug applies to any drug, trial or not. She may not respond as well to remi as O did, T may need humira, etc. But, whether or not she gets the drug at all is obviously very important! If there's a chance she will not get the drug, ie I'm thinking perhaps there are some trials where all patients get the drug??, then I'd really want to know his justification for taking that risk!

Also you said '2016', when in 2016? How long will she have to wait before he decides enough is enough. Is he just going to put her on which trial begins first? And how long do the trials run? When would he be expecting to see improvement? ie is there a long lead time to reach therapeutic levels as in imuran, etc.?

Sorry, just have more questions, not answers for you! :ghug:

(hmmm, you'd better get in to see him soon... too late in October, you'll be way past mulling and will need a two-day retreat with him so you can get through all the questions you'll have by then!! :lol:)
 

Jmrogers4

Moderator
Ugh, so many questions. Just to throw it out there. You know how long we waited with Jack, which really looking back on, yep pale, no growth but did he complain, nope. Doc said back then if he had bloody stool he would not hesitate to put him on biologic so instead we tried at his suggestion ldn while it didn't make things worse he wasn't really all that much better still no weight gain or height. So I would be for questioning what his reasons are, one of my regrets is the time wasted trying ldn before going to remicade but then I'm sure I would feel differently had remicade not worked. Where's my damn crystal ball when I need it.
 
In terms of her height, could she be done growing? I haven't read every post but noticed she already had her periods. A bone age would give you a good idea about how much statural growth is left.

I definitely would want to know why the doctor is so interested in the clinical trials. Is the doctor involved in these trials?
 
Yes! She started getting her period at the end of her 9th year. That has been my debate all along. Even when we got the initial referral to go based on no weight gAin. "If she is done growing why would she keep gaining weight? But I guess when she gained 6 pounds when she got to Fcp of 51 and then lost it they got antsy. I think a bone age X-ray would be interesting.

Also agree on your question about the trials! Trying to research that now.
 

Maya142

Moderator
Staff member
JM: Your story is exactly what we are going through!!!! So scary to wonder what is ahead and a bit exhausting. I just want to find what will work and move on already.

XMDMom: One of my regrets for not pushing for testing earlier is that I truly feel we missed her window for growth. Both of her sisters are 5' 7" or more. She clearly would have been taller if we got her diagnosed at 9 or 10. Why oh why didn't anyone listen to me. I am pretty sure a bone age scan will show she is done.

Maya: Genius! If we are talking clinical trials and using EEN long term until those other drugs either come to trial or are approved maybe we should also be talking about getting her into an EEN trial?!!!

Feeling better today. I actually thought he wasn't going to be phased by the goings on and say stick with the Entocort a little longer. We know EEN works for her so at least we are doing "something" about the inflammation. It is really the long term plan that is fuzzy right now but I do take comfort in the fact that we will be healing her. Fingers in the ears for all of you who are about to tell me studies show not as effective second time around or after steroids etc!

Heard from the nurse...continue Mtx indefinitely which imo is bogus...also continue at 6mg Entocort for first two weeks of EEN then I will get instructions on taper.

See y'all in 5 or 6 weeks after we get her FC results. I want them to be low but if they are not.......
 

Catherine

Moderator
[/QUOTE]
One of my regrets for not pushing for testing earlier is that I truly feel we missed her window for growth. Both of her sisters are 5' 7" or more. She clearly would have been taller if we got her diagnosed at 9 or 10. Why oh why didn't anyone listen to me. I am pretty sure a bone age scan will show she is done.
.[/QUOTE]

I know that feeling. I am sure we missing the growth window with my youngest. We don't have a dx. Only low ferritin/borderline anemia. No other symptoms. Maybe she was just meant to be smaller, that's what the doctors are telling me.
 

Tesscorm

Moderator
Staff member
Maybe a rudimentary way to judge height growth but I was once told by a doctor that I would have been approx. 3-4 inches taller had I not had juvenile osteoporosis. He/she (can't remember, it was so long ago) was able to determine this by measuring my arm span.

So while I don't know how this corresponds during the growth phase, apparently, although my height stalled for a period, my arms kept growing (hence my ape-like appearance! :ytongue:)

And, CIC, re the dr being part of a study. This was a real concern to me when S started remicade. S's GI strongly recommended remicade, had reasons why he didn't want to try anything else and, once we agreed, his office asked S if he'd participate in a remicade study (on which his GI was a researcher). On top of the anxiety of starting remicade, this seemed to be a conflict to me and drove me a bit crazy. But, now that time has passed, I really do believe his recommendation was the best for Stephen and there was no 'ulterior motive'. In addition, I think it's because S is in the study, that we've had his remi levels tested three times and there was never any discussion of cost. (My friend, whose daughter also has crohns, has had to pay for the prometheus test twice!) So, I suppose conflicts may exist at times but, I would expect that it is very rare for a doctor to make treatment decisions based on his/her study affiliations.

Perhaps another question(s) would be what will be involved in the trials? How will T be monitored, what tests, etc. It may work to you/her benefit??? (But, don't misunderstand, whatever the 'benefits' are, they would never be worth it if there's any question that T's crohns will not be treated properly.)
 
Ape like appearance:rof: Our whole family has ridiculously long arms! Great for swimming and softball! Lousey when trying to find long sleeve shirts that fit!

New slant to my thinking. I think I found the drug. It is sill in early phase of adult trials. I really don't think they will get around to peds for a long while.

T already tried EEN and diet approach with Mtx and inflammation returned with the introduction of food. So why on earth do we think it will work this time? So we play nice and do EEN/diet and inflammation returns. No way will he want to wait for the ped trials. He will be forced to then escalate. - OR- we do EEN/diet and really watch the diet portion this time and it works and her inflammation is controlled. - OR - trial gets fast tracked and EEN/diet doesn't work and we are asked if we want to participate in trial and we say no (ultimately the decision is ours) and he will have to escalate to biologics.

In every scenario we win. So I am not even going to fret about it one more minute. Except to say that I do think it stinks that T has to jump through hoops again in order to play this stupid game.

Hint to newbie EEN parents...if you are going to do EEN do NOT put off staring for a week or so. IDK if it is because she really knows what it is like or not but the anticipation of starting is weighing on her a little. She much preferred the rip the band aid off approach. But she wants to enjoy her birthday more so is willing to deal with the impending doom feeling.
 

my little penguin

Moderator
Staff member
Second the don't wait to start een
This second go around Gi told Ds around 4:30 pm
He got to order his last meal on the way home ( still cried over it being his last meal )
And started the next day .
Granted this isn't possible if you child is doing elemental or semi elemental and you don't have supplies yet ;)
Ds has a large supply at home always since he never stopped supplemental nutrition


Glad you found dime piece with it.
Honestly when we left the Gi office 5.5 months ago now and Ds was told to try een plus this new just published partial en with crohns exclusive diet - I thought it wouldn't work and wasn't too thrilled at any of it at all.
Still not thrilled with an extreme diet but it has dramatically changed Ds symptoms ( not taken them all away but functional again mostly )

So if een gets her to feel better
Maybe you will find her sweet spot with either type or quantity of food .
The research I have read indicates both are a factor and free diets don't work as well in combo with partial en
 
Crohnsinstinct,
I really think you should get another opinion. I just can't understand why he doesn't want to put her on remicade if your other daughter is doing well on it. I can't understand why he would want her to wait for clinical trials like the others said.
Fingers crossed the EEN works for her. Keep us posted if you decide on the second opinion.
 
Ps. Wanted to update, daughters number two and three are both going to the GI in two weeks. Daughter number two has had a bunch of tests done (stool and blood)which have all been negative so far but continues to have bad stomach aches and diarrhea. Daughter number three has had blood in her stools on and off for years. She saw a GI doc several years back who just did a few blood tests and a fecal call, which at that time were negative. For a while things seemed better with her but then over the summer she started complaining of stomach aches again and started having blood again. Never a dull moment!
Oh and daughter number two is also being worked up for a possible bleeding disorder called Von Willebrand's Disease. It is the most common bleeding disorder there is. We saw a really nice hematologist who managed to get blood from her without chasing her around the room. (She is my one who freaks out over blood work). We are awaiting those results. They said they take about two weeks.
 
Gee Kim! can you juggle one more thing? Good luck with the follow up. Good for you for pushing the GI for answers. May not be IBD but it must be something. Constant pain like that isn't normal.
 
I hope the EEN gets her fc numbers down! I would be hard pressed to convince C of 80/20 EN with other med options out there. So I'm glad T was agreeable and I hope things improve for her greatly! Hugs!
 
Me too Carolin, daughter number two seems to be getting worse. I really hope we can figure out what is going on with her stomach. On the one hand I want the tests to continue to be negative for her but on the other hand answers would be nice.
 
I normally wouldn't post with this little goings on but with all the bizzarro things on the forum lately I thought this was too hysterical not to share.

As of Sunday, T has completed 2 weeks on EEN. She has been on 6mg Budesonide (taper from the 9) since end of August. Our instructions were to keep MTX as is and call for instructions on Budesonide taper after two weeks.

Well nurse was out Monday and Tuesday. We are waiting test results on O so I figured when she sent those to me, I would ask her.

Well, I got an email re: T! I wasn't expecting one. In it she says the doc is calling in a refill and is reducing her mtx dose to 15mg! No mention of Budesonide. But here's the thing...full strength Budesonide and 20mg of Mtx didn't hold her. We added EEN and tapering steroids so what the heck lets reduce MTX also and see what happens!

Good luck trying to guess his rationale here guys!

Oh and then nurse asked me T's current dose...ummm shouldn't you have that? Oh no e don't because when they cut over to electronic records 10/1, they decided not to input old info....makes totally sense :rof:

P.S. guess #1 is in...perhaps they got O's fc result and it was normal but mistakingly read it as T's?
 

Maya142

Moderator
Staff member
My (very optimistic guess): He is lowering her MTX dose because she won't need as much when he puts her on Remicade ;).

Sending hugs :ghug:!
 
lol. I like it maya!

I have another...don't clinical trials sometimes have a no xyz med within so much time requirement. Maybe he is trying to get her down so she could be accepted in the trial we can't find on the .gov site and that we aren't even sure we want her on!
 
You're right--that is strange! Or at least it's very strange that he would do that without even talking to you about his reasons. I like Maya's explanation too!
 
That does sound really odd! Maybe they did mix up the results? Don't you love how much more accurate electronic records are (not)!
 
The only thing I know at this point is they didn't mix up the results because her sisters results were not even in yet.

Oh and we are also decreasing Budesonide down to 3mg's.

O had appointment with him on Tuesday...I have a list of questions as long as my arm!
 
Had o's appointment. Asked why the reduction in t's mtx. He said because 20 is the max and she has been on that dose long enough.

She is finishing up her 4th week of exclusive enteral nutrition so we pulled an fc today. Gi says if elevated again we will have to consider a change in therapy...Ya think?

No entyvio. Not proving effective in crohns. Great for UC and maybe colonic involvement only but not for t.i.

That clinical trial is too far out.

Let's hope fc comes down and we don't have to escalate.

That sounds like a plan to me....hope! Why didn't I think if that?

Oh yeah and I asked him why do scared if remicade. He said nothing I don't already know. Just hates to escalate mild kids to biologic
 

CarolinAlaska

Holding It Together
I wonder if these docs have any idea of how crazy they make us? How is T doing with EEN? Does she have a full-time NG tube in?
 
Mild kid here escalated to biologics. I an understand the reluctance to escalate. But then it's hard not to wonder if you would buy time later on for them by utilizing top down approach.
I wish we all knew if biologics are changing the stats re time to surgery from dx.
While my little one had some great fc drops with humira, she also had a fabulous drop with een.
Hope you see the same.
 
I wish we all knew if biologics are changing the stats re time to surgery from dx.
While my little one had some great fc drops with humira, she also had a fabulous drop with een.
Hope you see the same.
We do have stats! Risk if surgery without biologic. 75%. Risk of surgery with biologic 35-40%

Een worked the first time for t. Problem is keeping her there. Plus some say een is t as effective second time around or after steroid use.
 
Pilgrim: you can cuddle up with this at night when the biologic risks start to scare you

http://www.ncbi.nlm.nih.gov/pubmed/26271358?dopt=Abstract
Keep in mind the figures I quoted in my last post were for over a lifetime and quoted by our doc. I have also seen them quoted in presentations, twitter feeds etc.

I am very hopeful a lot of our kids will be able to avoid surgery.[/QUOTE

I have only seen the Stat 75% within the first 5 years of diagnosis. Your info is encouraging. Looking forward to the reading.

So, does that make you think about a second opinion re treatment?
 
Ha ha, she beat me to the question. Will you be getting a second opinion?

My thinking is that even if Grace had to have a surgery down the road, how many surgeries did she avoid by doing biologics right away. That's a thought that makes it easy to stay on Remicade!
 

Jmrogers4

Moderator
But is it mild? Take my stubborn child for example. It certainly appeared mild, but the "milder" medicine wasn't taking care of that simmering inflammation. I think it still baffles the GI that he needed to move to biologics and he says nearly every time he sees him (especially with all the growth) I guess we made the right decision moving to Remicade because clearly looking at him now he needed it.
I guess at what point do you decide that it's been long enough and they need something more?
 

my little penguin

Moderator
Staff member
Another "mild" case on biologics here as well
Got the same " his body really does well on biologics "

I think they need a new system to rate kids
 
Meh you all know I'm pro top down for kiddos but my kid was stated as severe at dx so there was never a need to question it.

Even now after surgery it is taking humira and mtx to tackle inflammation only seen at the cellular level. Who knows if it's working because C doesn't cooperate in the "showing symptoms" or blood work category!

You have her on EEN so if the next fc is high that's as good a time as any to flip the script!

Hoping all results are good and no script flipping is required!
 

Maya142

Moderator
Staff member
Mild here too - did great on biologics. Colon looked absolutely "beautiful" after 8 months on Remicade + MTX. Biopsies were clear in the colon (TI showed mild inflammation but MUCH better than the first scope).

Well, you know what I think -- I definitely vote second opinion too - this is getting ridiculous! Sending hugs :ghug:
 
Not mild here. But I also have to disagree with your doc about entyvio. Our doc just came back from a conference in Washington DC he said the studies are showing entyvio works for crohns but it takes a much longer time then for UC.6mos to a year vs two to four months. He also said they are seeing better results when it is given with methotrexate for the first six months but continuing the methotrexate after six months did not show added benefit. (Kudos to myself for suggesting to our doctor that we fired in April that we should use methotrexate as a bridge u till the entyvio kicked in. I guess I was ahead of the literature, 😎). Anyway just some info to share so you know that entyvio could still be an opting for the future.
 

my little penguin

Moderator
Staff member
Kim
Entivyo studies are very clear in how they word them
It induces remission in UC
But they will not use the words "induces remission " in CD.

That said something work better for others that technically aren't suppose to work for CD.
Probiotics is a prime example for are proven to work for only UC not CD
But they work well for DS


CIC I agree with the others
Your kids deserve to feel good
Hope you get a second opinion soon
 

Maya142

Moderator
Staff member
Our GI also uses Entyvio but only as a last resort right now. She says that for Crohn's the anti-TNFs are much more effective. I'm curious to see how meds will change in the next few years - Stelara is supposed to be approved for Crohn's in the next year.
 
Oh man Maya! If Stelara gets approved that is my go to drug for O! It has amazing success with psoriasis...I dream of the day I can attack both issues with one drug!

Kimmidwife: my nephew has all colonic Crohn's. They were actually for a time thinking of changing his dx to UC. He failed Remicade. For some reason didn't move to Humira. Started Entyvio about year ago and is still not in solid remission. It's a shame because he seemed like the perfect candidate. For a time he was asking to have his colon removed because he was suffering so terribly. I am praying he could hold on long enough for some of the newer meds to enter the market. His disease almost exactly mirrors O's but he didn't respond to Remi. Go figure.

Believe me...you guys are preaching to the choir here! I do hate that mild disease will need biologics but heck if that is what it needs then let's give it!

JM: your story sounds eerily similar to T's and actually now O's.

Fc went in yesterday so I should have some indication of whether or not EEN worked within 2 weeks. Fingers crossed bt not sure what I am crossing for. FC down then move to slow reintro and wait to see what the next FC brings. Still elevated then change therapy.
 

Maya142

Moderator
Staff member
Phase III trials look good for Stelara with Crohn's (incidentally the dose they used for Crohn's was MUCH higher than the dose for psoriatic arthritis). But even if it's approved - it'll be approved for adults with Crohn's -- might take another year or so before pediatric GI's start using it.

This is the Stelara study in case anyone is interested: http://www.medscape.com/viewarticle/852848
 
Pulled T's FC at 3 1/2 weeks (she has now completed 5 weeks) and the result came in today....27.1!

I know the GI is going to positively thrilled with this result.

Guessing we move now to the slow reintro of food on the IBD-AID diet (6 shakes and 400 calories of food) and pull an FC in a number of weeks and see what happens. We have been down this road before so I am cautiously optimistic.
 
GI wise - fine

Lots of aches and pains that we are going to see GI about because he has some concern that it might be sacroiliitis. That appointment is next Tuesday.
 
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