C is having symptoms

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Ugh! So late to the party but just to throw my two cents in...

I am also learie of adding a med when doc hasn't seen him and blood tests looked good. I mean suppose the gagging food coming up thing is something else that needs a different fix. Also without the HACA and Remi levels tests who knows that adding MTX to the REmi is even what is called for. Maybe the Remi needs to be dropped all together. Should you give the nexium a chance to work? Totally support the Fecal tests! Too many questions that need to be discussed before you jump at an option based on one quick phone call to a nurse and her discussion with doc.

Just a thought about the Remicade...joint pain was a side effect they said might happen...something about drug induced lupus or something like that. Not trying to freak you out but maybe joint pain has more to do with the drug than the CD.

So all this said, obviously my preference is EN but I would be comfortable adding MTX (assuming all the above questions were addressed) and at the very least it would help with the antibodies.

JMK: so glad Ryan's numbers are looking good!

Oil of Wild Oregano!!! I am an addict! But also having candida issues so wondering about that high dose...how much is high? I use 2-3 drops once or twice daily.
 
Thanks so much for all the advice and info guys!! I plan on making notes on everything from this thread and the others that I think will support my positions and concerns before moving forward with treatment. I would not be near as prepared for dealing with all that CD encompasses if it were not for you all. :ghug:

I just noticed I missed some posts on here at some point. Twiggy and Tesscorm thanks for the ng tube information I had been looking for the thread where you guys mentioned ng tube size earlier but I got side tracked...weird how that always happens when I am on the forum!:ybiggrin:
 
Ryan is on the mtx/remicade combination and we do bloodwork every 6 weeks at infusion. He takes the mtx injection once a week. Right now we are doing the HACA and Remicade levels every other infusion in order to keep an eye on that HACA level. If it levels out, maybe they will stop that test for a while. We'll see!


Clash, glad you are taking notes. But whatever you do...don't tell your GI that you read it on the internet! You might be getting the volcano headed explosion like I did :ymad:

We need a volcano head smilie!
 
Not quite a volcano but...
blowup.gif


Dusty. :lol:
 
jmckinley said:
But whatever you do...don't tell your GI that you read it on the internet! You might be getting the volcano headed explosion like I did :ymad:
Click to expand...

You just reminded me... at Stephen's last ped GI apptmt, I was a little annoyed to begin with (remember the emails from the nurse not giving all the MRE results, etc.... anyway), so my emails must have been passed on because he was very good about explaining, etc.

So, told him I'd learned about lactoferrin and fecal calprotectin on this great site and why weren't these ever run on Stephen as they would have helped differentiate between IBD and other inflammation when things were questionable in the past.

He mentioned possible metho but I told him Stephen's enzymes were already high (I keep my own chart!!! :lol:) and wouldn't metho only worsen that? He assured me they were barely high, ...after he flipped back in his chart (this was before levels actually jumped higher!)

We, okay, I, started on about LDN, he said there was only one study...

I said, 'no, there's two, including the ped study and a number of other studies, not on Crohns but on other autoimmune diseases'. I told him that there was this great site that he should look through as there was tons of info! This one and the LDN site :thumright:.

He may have been getting a bit annoyed :tongue: as he said, yes but results hadn't been published and, not too worry, he was on top of things! :lol: (ummm, like the MRE results!?!?! Thought that, didn't say it...:))

I later received a copy of the transfer letter he sent to Stephen's GP and new GI and said 'his mother is interested in pursuing additional tests and LDN and that she is relatively well informed from certain consumer blogs and forums'. !!!

So, he did give credit to the internet! :D The volcano simmered a bit, I think, but cooled off! :D
 
If you want to make it really specail.....:shifty-t:
Have his girlfriend decorate the hat. :thumleft:
Nothing says love like a speckle poo catcher.:ybiggrin:
 
At least you get a hat for poo! Had to get Amy's urine sample - teeny, tiny little bottle with nothing to catch the wee :eek:. I ain't holding that under there!!! Got creative and washed out a large yoghurt pot.
Clash, don't know how I managed to miss almost an entire page! Good luck getting the calprotectin done and hope you manage to see the GI soon!
 
You can also use a cut out empty clean water jug( milk container size) for urine - don't ask me how I know.
 
:shifty-t:Empty clean yogurt cups make a perfect size collection cup. Plus they come with a lid.:thumleft:
:yfaint:Just make sure to mark it.:eek: Husband's hate those kind of surprises.:lol2:
 
Update: So was ready to get bm sample on Sunday(10/7) had the poo hat and container sitting on ready. He didn't go all day and by evening he wanted to go to youth and of course had a bm there.:ybatty:

By Thursday, I was starting to freak out a bit since he hadn't went and also he started with the night fevers and was complaining of his throat hurting.:frown: Thurday evening, I realized, :facepalm: he had been really compliant with his iron supplement all week, Friday he finally went.:applause:
The sample was black and tarry(hopefully due to iron?) there was some blood and mucus.

The night fevers have turned into most all day fevers running from 99.4-100.9 and throat hurting has been his biggest complaint, still. He has lost more weight due to avoiding food because of his throat. He has complained of sore gums but no ulcers, gi complaints or joint pains. He just came in a minute ago and said he felt like an oral ulcer was forming.

Since, Friday he has had two bms one he flushed on accident so I didn't get a peek but the one tonight was thin(earthworm diameter) and somewhat pale and really soft but no blood.

Tomorrow, I'm going to take him to the GP, get bloodwork incl. CPR, an in-office quick strep test, and a throat culture. Also, I'm going to call the GI nurse give her all the detail and tell her I want an appt with GI before starting any new medication. He doesn't have a Remi infusion until Oct. 24th so I'm hoping they will be able to get me in before then.

Up until today, :tinfoil: C has been saying I think this is an infection because I don't feel any normal CD stuff. I'm not sure if this is just denial or wishful thinking on his part :tinfoil: But that is why I am going to do the throat culture and strep test well because of C and that paper David posted about 50% of the time it being something other than a flare in his last book post. Which is probably wishful thinking on my part:tinfoil:
 
I hope it is all due to an infection :ghug: Having some sort of bug can throw anyone's system off, crohns or no crohns! I hope this is the case!!! While Stephen had the night fevers/sweats and even some daytime fever, a sore throat was never part of it! But the changing BMs are worrisome. :( Ughh... :angry-banghead: Glad you're seeing the doctor tomorrow! :ghug:
 
I think the changing bms is the iron supplement, I didn't let him take it Friday and we have changed to every other day. He was given the iron supplement last appointment in Sept. but I've had a hard time getting him to be compliant(like a dummy I made him start them daily, no excuses, about the same time I called for the fecal protectin) as they make him nauseated. I've switched to nightime and every other night until we get all these tests back and talk with the GI.

He wanted me to check the ulcers he complained of earlier tonight and sure enough he has four. I always associate the ulcers with the start of a flare because it was such a prominent issue in the beginning so I guess I may be dragged out of the bubble.

Thanks for the hugs, Tesscorm! This is the week for Stephen, right? The 17th or 19th or am I mistaken?
 
Oh no, getting dragged out the bubble is no fun!! :yfrown:
I feel like I am denial about Andrew as well. He never quite seems right, but I can always blame it on something else :shifty-t:.
Hope you manage to get an earlier appointment. Maybe it is just a bad throat infection that has moved into his mouth - see bubble intact!
 
Ugh the things we wish for! I am wishing for a simple, no nonsense throat infection for C!

Good luck with the appointment tomorrow Clash, I will be thinking of you both and sending loads of healing thoughts your way. :heart:

Dusty. xxx
 
Update:

We went to GP today, he said his throat only looks to be mildly irritated which doesn't jive with the pain and all he is experiencing. He did a throat culture and CBC. I wanted a CRP check but realized after draw he was doing SED and not CRP...Grrrr! But anyhow, he said it's hard for med professionals to differentiate between cd flares and other issues at times so he thinks I'm making the right call wanting tests before I agree to MTX.

I think we are battling dehydration now as C is having trouble drinking even water due to the pain so we may be headed to ER at some point if I can't get fluids into him. He is thoroughly miserable at this point and feeling awful. I seriously hate this damn disease!
 
Is he not drinking because of throat pain? If yes, perhaps try ice chips or popsicles... the coldness may actually help the pain a bit and he'll get some fluids,

I hope you can get him drinking but, definitely get to ER if that's what your instinct is saying! :ghug:
 
We tried popsicles but they burn his throat as did Gatorade. I'll try the ice chips though hadn't thought of that! Thanks Tesscorm!
 
Sorry to hear Clash is not doing so well!! Definately worth taking him to ER if he can't drink enough. I always think dehydration always makes other things feel so much worse. Just a thought - maybe you could give him something like Gaviscon liquid (heartburn liquid)? It might coat his throat long enough for him to get a drink afterwards.
 
So sorry about the sore throat. Ryan's is very sensitive to flavors all the time. There are some drinks that just burn all the way down! Our GP office will do a bag of fluids if Ryan gets dehydrated. Might save you a trip to the ER for fluids. Have you tried a "swish and swallow" type liquid to numb his throat? I use that when Ryan's is bothering him. Gives him a little numb time so he can down some liquids.

Hugs! Hope things get better soon. I agree, I hate this disease too!
 
Hey Guys, we made it through the night. He was able to get some water down and finally get to sleep. I have a call into the GI. The bloodwork from the GP should be back today, which I will call about but the throat culture won't be in until tomorrow.

I'll ask the GI about a swish and swallow concoction, I'm not sure if the one he got for mouth ulcers last month(carafate, lidocane, antacid) will work, does anyone know if he can swallow that?

We still aren't having any GI symptoms just a few mouth ulcers, fever(started with night fevers and now during day some too) and this blasted throat. Just not sure what to make of it, the GP said his mouth and pallete looked fairly good and the back of his throat(you know looking with the little flashlight) only looked mildly irritated but C's refusal to eat or drink much makes me think something is going on somewhere in his throat. I really hope the labwork will tell us more. Last night, he decided he was keen on an ng tube, if it would help but heck at this point I think he'd be keen on carrying a a 1980's boom box with Barbie Rock blasting out the speakers if he thought it would get him past the throat pain!
 
Aww poor kid. I hope you get some answers today. With no GI symptoms, it really could just be a bug!!! I hope it can be taken care of easily :ghug:

Be careful of trying NG tube with sore throat though. I'm not sure if the tube would come in contact with the 'sore' part of his throat but, if yes, it could hurt or irritate the area and then C will never want to try the tube again.

:ghug:
 
I was wondering about that, even with the infant tube I guess it would cause irritation if placed where his throat is already sore, right?

I really would like for this to be an infection, I was asking Crohnsinct what she thought as C's initial inflammation was in his TI, and symptoms galore, is it possible that all is well there but now we are dealing with something in the throat that is CD related? It just seems that if the Remi worked for the TI(i.e. no GI symptoms) then the odds of this being inflammation in his throat should be lower, right? Honestly, I'm grasping at straws to get my head around all of this. I'm just hoping the GI will call back soon.
 
I really don't know???

I would 'guess' if the remicade is working and managing the crohns in his TI, then that would be an indication that the remicade is 'working' and would manage the crohns throughout his body. But, really, this is just a guess based on my assumption that remicade is as systemic medication rather than being targeted at just the bowels.

And, while I'm not saying it's not crohns-related, people with crohns do just get colds, viruses, etc. Like you, I'd definitely be on 'high alert' but, as he's not showing any GI symptoms, it really may just be an infection. I never get canker sores (so no real personal experience) but can't they come from (non crohn's related) fevers, infections, etc.?

I guess you haven't received any results from yesterday yet?
 
I feel the same, if the Remi is working then it would work systemically. At least, that is what I am hoping and why I had the doctor do the throat culture. I think, too, that maybe we are dealing with an infection that is hanging on due to him being immune suppressed from Remi.

He just got up, he is able to eat a little when he first wakes up and to drink, he has some energy from about 11:30 til he comes home from school. At that point, it is like he crashes, he goes straight to bed, and just lays there sleeping on and off, complains of feeling awful and the fevers start up. In the first few days, the fevers showed up around 8:30pm and lasted most of the night but were gone by morning. Now they show up when he gets home from school and go through the night still by the time he can get moving(10am) the fevers are gone again. His says he feels good mid morning to around 3pm although he is unable to eat any lunch because his throat hurts so bad.

I have fingers and toes crossed this is just viral/infection but no, the bloodwork hasn't come in yet and the fecal calprotectin we sent off last monday isn't supposed to be back til the end of this week start of next, I think. I will call about yesterday's bloodwork mid afternoon.
 
:( poor guy :( poor mommy...

Here is a thought and don't tell C I said it or he will not let you talk to me anymore but if this is an infection of sorts (and I love your immune system suppression theory by the way) I think he needs to spend a day or two of total rest to try and knock this thing out for once and for all. You know how when you are sick things linger until you finally succomb and stay in bed for a day of total rest. Especially with the suppressed immune system (and keep in mind he got sick when the Remi levels were still pretty high so immune suppression at it's highest).

Sorry...I know he has a demanding academic schedule and has missed so much school already but I would at least try the rest idea. Bless his heart for pushing himself like that though. Just goes to show how tough these kids are.
 
Hi Clash,
When V was first ill she had throat pain though no inflammation seen either grossly or microscopically on specimens; she said swallowing was painful and of course wasn't eating at that time, even liquids hurt going down.
Her inflammation was all and ONLY in TI.
She also had horrible gastric dysmotility at that time though tissue samples from the stomach/esophagus were NORMAL.
How TI Inflammation caused this I cannot tell you. But apparently it did.

Of course you know I shall urge you to try the NG/formula feeds at night.
I am a zealot after all. :shifty:
If he uses a tiny 8fr tube like Violet and Stephen do it shouldn't irritate; they are flexible and soft and so small.

HUGS,
Julie
 
Update: So yesterday afternoon, evening and night was pretty much awesome! He came home in a really good mood with a fair amount of energy, no fever and an appetite! He said his throat had not hurt much of the whole day at school and all that he could say was that it still felt like there was a ball in his throat but it didn't seem to be bothered by eating.( I honestly have no idea what "ball in his throat" means) It's a little worrisome just because before dx he complained of a knot in his throat but he always said it was hard to swallow past. Anywho, he ate well, did homework and played xbox, all of which he hasn't been doing for a week also he was laughing and cuttin up, made my heart smile! Maybe this is just going to be viral, I'm still waiting results on everything but I have left messages with GP to call as soon as results are in!

Not sure if I posted this earlier but gi nurse called yesterday too and after hearing symptoms said she felt he could be dealing with something viral but results would tell the story and that she would be calling to check on him today. This was before he came home still feeling good but I have to think that will only make her feel more comfortable with her theory.

So twiddling thumbs and waiting for results! I am so impatient!!
Oh also he got went to school on time without the icky drags, hasn't done that in a week either! Good thing too seeing as he is supposed to take PSAT today!
 
Ummm...I am dumbfounded! Are there different units of measurement used when doing the calprotectin? I've only found mcg/g{ug/g} of feces. The nurse just called and C's calprotectin test came in this morning, she scheduled me with the GI tomorrow as C's level was 1200!!! She stated that they were really concerned as his level was extremely high, the GI feels he absolutely needs the MTX but wants to take a look at C and check some things out as well. As usual, I was mostly just in shock, I did get a couple questions in, but didn't think to ask what units were being used for measurement until I got off the phone and looked up the normal range. We are hoping the blood work will be faxed to her as well today from the GP but she hadn't recieved it yet.

The calprotectin was taken before the throat pain, we originally asked for this because he was experiencing joint pain and the doc wanted to put him on MTX. I asked if we could test his calprotectin levels first. The throat pain/night fevers and ulcers didn't show up until 4 days after we turned in the stool and as of last night the throat pain/fevers had subsided. So maybe he had a virus on top or maybe it all is related to CD. But at 1200, wouldn't he have something going on with the GI tract? Pain, cramping, D, C? Ughhh...I'm just flabbergasted and don't know what to think. When all this started it wasn't his GI tract we were worried about either though, it didn't become a symptom until well into the diagnosis process so maybe not.
 
Units I believe are pretty standard below 200 is what is desire for Ibd patients .
High for normal folks but not Ibd patients.
Glad the Gi is seeing him the am.
I think signs and symptoms depend on the kid .
 
MLP, I thought the units were standard but wanted to make sure. So, I took the stool sample to the lab, 3 weeks and 4 days after his last infusion. Does that mean the Remicade is burning through his system too fast, isn't working at all or that there are antibodies? Just trying to take in all the info I can so I will know what questions to ask GI. Are there any tests I should request that would give a clearer picture? I have no problems, (I mean other than the regular freak out) about adding MTX if it will bring C's levels down/bring about remission.
 
Wow talk about your roller coastter of emotions! One minute YAY virus the next going in for extremely high stoll test results and probably adding MTX. So sorry you have to deal with this.

All your questions are valid...is he burning through the Remicade (as that was pretty far into his infusion schedule) or building antibodies or is it just not working. I think the only tests that will give you those answers are the HACA and levels tests.

Good luck!
 
Is 3 weeks 4 days, that far into 6 weeks? I don't know, I mean the test was ordered a week before that and was ordered because of symptoms so his symptoms started rearing their ugly head at 2 weeks 2 days, it just took a day to get the test ordered and picked up from the other town, then had to wait til Sunday night for stool collection which turned into 5 days because he didn't have a bm due to the iron pill.
 
Yes, 3 1/2 weeks can be pretty far if he is developing antibodies. Ryan's remi levels were undetectable 2 weeks in before we started the methotrexate shots. Now they come back normal. Get the HACA and remi level test done through Prometheus in CA. Your GI should be able to draw the bloods and send them off.

Ryan always has other symptoms of flare before actual stomach problems. Funny feeling like lump in throat, inattentive behavior, tired, skin gets chalky...then the gas, loose stools start. But the other things can go on for months before that.

I know you hate to do it, but the methotrexate helped alot! If he is going to take the remi anyway, might as well make it work its best.
 
Hey Clash,

Sorry to hear about your roller coaster ride. I have terrible acid reflux and it sometimes gets to the point where my esophagus is inflamed and it feels like there is a lump in my throat that I have to swallow past. The description of a ball in his throat made me think of that.

Hope it all settles down soon.

:hang:
 
Thanks jmckinley, twiggy and crohnsinct. I'm going to see about the Remi and java levels test but don't know how successful I'll be. Twiggy,the GI nurse mentioned that today as he had gastritis with his first flare and she said the lump probably has to do with the inflammation causing gastritis and in turn acid reflux. He takes nexium every morninghopefully it will.
 
Clash, what about doing a capsule endoscopy to see what's going on in his TI?
Then you'd know for sure; those pictures do not lie.
For a point of reference, the highest Violet's lactoferrin (similar to calprotectin) has ever been was 5200. Normal is 0-7. She had NO, zero, zip gut symptoms at the time.
 
That is where his initial inflammation was, the diagnosing GI said it was severe. He also said that his labwork(CRP, ESR) was not indicative of the amount of inflammation that was occuring there at the time. I just know the pics looked horrible compared to that of the smooth colon that they also had pics of. Do you think there is a need for a pill cam? This poor doctor, he probably cringes when I walk through the door, binder with printed studies, bm schedule, symptom schedule, eating habits! Maybe I should bring him one of Crohnsinct's cupcakes as a peace offering before I battle it out about what I want to see done!?!?

C said well that test can say what it wants to, I feel good today. Hrrmmmphh...can I please just have symptoms match test or test match symptoms just one freakin' time so I can feel confident about a decision?!?!?
 
HA "tests match symptoms"...welcome to my personal hell. :hallo3:

V's test results have NEVER reflected the disease in her TI.
Nor have her symptoms.
Only the pillcam showed it. Scopes always normal, (and she's had FOUR since dx in 2008) biopsies always normal, labs only "slightly" off EXCEPT for lactoferrin. CRP has never been higher than 2 and is usually normal.

The pillcam is the best option for these kids with TI disease to get irrefutable data. If you get those pictures you'll KNOW if the Remicade is working. You cannot go by labs/symptoms in pts with TI disease; it is often insidious and asymptomatic.
 
Only bad part is most insurance will not cover the pillcam after crohn's has been dx.

Good luck with the Gi Thursday.
I just email links instead of bringing papers it makes me happier.
 
Imaboveitall...ughhh seriously..just what I need instead of hiding love notes or bad grades his body is hiding the activity of an insidiously awful disease! Yeah, I doubt ins would cover a pill cam, I'm not even sure they will cover the calprotectin test but I didn't care I wanted it done. His inflammation did show up in a ct scan during diagnosis, before the colonoscopy, does that mean it would show up on an MRE since I would like to avoid radiation?
 
Clash, so sorry for all that is going on!!! Think we're on a similar rollercoaster (will update Stephen's thread) :( Have no other advice for you but will be thinking of you tomorrow and looking for your update! Hope C is feeling better though! :ghug:
 
It's probably all moot, I mean the night fevers were more than likely cd as were the ulcers, it seems clear the MTX is warranted, best to get the most out of the Remi. I'll update when we return tomorrow.

Jmckinley good luck with the infusion tomorrow I will be thinking of yall!
 
It should show up in an mre.
We did back to back ct for comparison then switched to mre.
Nothing ever showed on his imaging study.
 
Tesscorm, so sorry to hear you guys may be on a similar path and I'll be sure to check out your update when I get a chance tonight!
 
Hate to add to the list of things that you are going in asking for but even if the pillcam showed the TI is still inflammed you need to know why...Yes Remicade not working but WHY? Is it just not working, Is he burning through it or Is he building antibodies. I can not believe a doc is willing to make a call on adding another med without getting the whole picture on Remi. What if the Remicade levels are fine and there aren't any antibodies...then Remicade just isn't working and time to switch altogether...no sense in pumping more of this drug in the kids body when if it isn't working...right?
 
Oh yeah and there was a time when O was symptomatic at 2 1/2 to 3 weeks so not that rare but certainly not what you want...something is going on at that point.
 
In total agreement with you crohnsinct:thumleft:...thanks for all the help guys!! I'm a well armed Crohns Warrior Mom now!!:tank:

Can someone please have the wine and cupcakes ready when I get home...battle takes it out of ya...seriously.:yfaint:
 
One more thing they did find that when Mtx is added it makes the remi more effective I forget why now ( sleep deprivation). It is not just to reduce / stop antibodies .
Good night
 
Thanks MLP, that was actually what I was trying to ask earlier, I just didn't know if it made sense. I mean if MTX lowers the antibodies then Remi will work better so wasn't sure how to word the question to mean what you stated!!!
 
That is insane, V's insurance covered it last year and will again this year. She is to have one every year now instead of scopes.
I thought myself it may not be covered in an already diagnosed pt but her doc said it is not an issue. I am not sure how he "justifed" it, maybe that her symptoms did not match labs was how. Her clean scopes but high inflammatory marker (lactoferrin)? There is no other way to rule out ileal disease. I'd pursue it and see. V is going to have her second one within the next month.

I would not add drugs without hard data on her innards. Her doc agrees. He knows all to well that labs often do not match the disease activity in the ileum.
SBFT is not enough for he or I. We want photos.

Cinct, excellent point. If a cap endo confirms Remicade isn't effective, that is only the first step. It does beg the question why?
 
Unfortunately Julie your insurance is in the minority .
If you google pill cam insurance most have very distinct clauses stating why they will not cover it. We tried from two different gi's from two different hospitals both times both insurances said "no".
DS does have disease present in entire Gi tract which was reduced to just his rectum and TI per his last scope so maybe that was why who knows .....

Agree you would need to ask why it's not working.
Just very frustrating .
 
That is just so very wrong, MLP on every level :ymad: But of course I know how ins companies roll.
I recall V's ins balking for some reason at the "breath test" for SIBO (??) but that was the only thing ever. There was one nurse in his office who said she'd make sure it was covered and she did. She also got Nexium covered on the first try (V never ended up using it) and without any prior meds "failing" so maybe it's just her expertise on how to work the *******s.
I do think with clean scopes/suspicion of insidious or silent disease the doc may be able to justify. V's scopes not showing IBD is maybe the explanation. I honestly don't know how otherwise to confirm ileal disease in an unequivocal manner.
 
Update:

Okay so we survived the visit. I took notes but it is all a swirl of illegible handwriting now.

He drew blood and is checking for levels and antibodies but he thinks we are okay in both instances. This is his explanation for what he thinks is happening(this is the part that is majorly illegible, so it might not make as much sense with my decyphering) He explained that there are alot of players in the process of CD and UC but it you look at the CSI for CD(and RA) tnf alpha is a major player so it would be a huge spike(he had a graph and it looked like a heartrate line with each player having a spike but tnf alpha had like Mt. Everest spike) UC was different with all the players playing more equal roles. So he then goes on to explain something about different phenotypes and that some CD patients the tnf alpha's role isn't that huge spike still a large one and it is with these patients that you get First non responders and more often a response but not the full response you are expecting. With these patients, adding the immunosuppressent seems to bring about full response, probably due to the fact that the Remi is getting the tnf alpha and the MTX is getting the others. That is such a sucky representation of the explanation he gave me but sorry guys...I would suck at court reporting.

He is concerned about C's high calprotectin level, and we will test it again soon after Remi, if it is high again at that time wants to scope and see exactly what is going on. I asked about the pill cam, he asked who my ins was, and said that the diagnosing GI had went as far as you were able to go with scope to get the pic of C's inflammation initially and that he could push for pill cam since blood results don't always match up but since the scope was able to get those pics he felt it would get denied. But we will cross those bridges if MTX and Remi doesn't perform well for him.

He will be on MTX, starting tomorrow 10 pills every Friday(if he gets the icky flu like symptoms then he will take five on Friday and five on Saturday). Bloodwork on schedule same as it would be done with 6MP.

There is like a page more, but it is too illegible to read and was a mind swirl of thoughts and comments so it doesn't make sense when I try to read it now. Oh yeah, and he put him on Folic Acid with Methotrexate.

Chase is still feeling really good, has had no fever or other symptoms and was really put out he had to miss an intrmural volleyball game to go to doc! ughh he was difficult all day because of this and I was ready to strangle him!! haha
 
Well I'm happy you got some answers:) as far as strangling him,....
that will never end. Ask my mom. :rof:



:hug:
 
Thanks, Farmwife! Glad things went well at the eye doctor!

Oh and I completely forgot to mention, the blood work we did Monday well the results came back and...everything looked good. SED rate, WBC normal. I don't have actual numbers, I will pick them up tomorrow. So, 10/12/2012 calprotectin 1200 and 10/15/2012 SED rate normal. How is that possible? The GP nurse called about results when we were on the way home from GI and the GI didn't have the results when we were there.
 
I'm so glad to hear that he is feeling good at least, even if there's "stuff" going on. V's QOL is always the thing that gets to me.

That sounds like a sensible plan of action. It seems these kids with ileal disease have such a harder time diagnostic and therefore treatment wise. Arrgh, it all just sucks a big one. Where's the stabby... :voodoo::voodoo:

Edit to add:
recall V's normal SED/CRP and high lactoferrin. It happens, it happens, don't ask why...:voodoo:
 
Glad to hear you had a productive GI visit and that C is feeling good. I know that strangling feeling. Ryan calms himself by cracking jokes. I just look at him and say "you're really gonna prank me right now?"

Ryan started out with the pills, but he did get stomach upset and he broke out in a rash. Turns out those pills have lactose in them and Ryan is lactose intolerant. He had "chicken skin" all over his face, neck, and chest. Shots fixed all those problems.
 
imaboveitall...forgot to say when we were in the waiting room, C sat beside a Mom with her baby and he looked to be maybe 9 mos old, anyway he had an ng tube and I was asking her about it and how the baby handled it(the baby was smiling, laughing and playing at C) she said fine, that he sometimes realizes it's there and then will pull it out, but no harm no foul. Anyway, when we were waiting in the room to see doc. C asked if that was one of those tubes I was talking about and it sure didn't seem to bother that baby. I think I do wanna do that instead of pred next time! YAY!!! for random baby in the doctors office!!!

MLP, going to check out the pod cast now. GI did say most of the other docs in his group start with shot and move to pills but he hasn't seen an advantage in that but if it was too much we could switch to shots.
 
Sweet. :dance: The tube really is so no big deal. It takes SECONDS to place and seconds to remove in the a.m. I am in the minority I know but I cannot understand why everyone uses it as a last resort rather than a first choice of treatment. But then we also love love love pred so I guess we are the odd balls. :tinfoil:
 
Clash, I'm so glad you got some answers!!! And that C is feeling good!!! :banana: And, YAY to the baby! :D Like V, it literally takes Stephen seconds to insert and remove!

And, yeah, I know all about illegible notes and forgetting what came between note A and C! :yfaint: I'm seriously thinking that I may set my blackberry to 'record' at the next apptmt. I'm not sure if a Dr would like that though???
 
Hmmm...a question I didn't think to ask. GI prescribed MTX and folic acid. Is there a certain preferred dosing schedule between the two or can I give them at the same time? A little late for today as he has already taken them. I know MTX is like an antifolate or inhibits folate from being metablolized, but that folic acid supplements don't affect it's efficacy but I don't remember reading about any dosing schedule between the two.
 
Hey Clash...sorry I dropped out again...called away from home and trying to take care of others' business for a bit. Anyway, yay baby in office! And I am glad the doc was able to explain things so you felt comfortable (well at least relatively) proceeding with the MTX. I so hope this gets him to a good solid remission! Keeping our fingers crossed!
 
Hope all is okay, Crohnsinct!!!

I'm hoping this brings about solid remission too. I wonder how long before MTX side effects of flu-like symptoms, nausea and such show up if they are going too? He feels good right now and is doing make up work from his absences.
 
No, everything is not exactly well but I am starting to feel like I have a better handle on things. Hey maybe I can take a two hour or so jaunt off the highway on my way through Georgia and you and I can visit Honey and her fam!

I have zero experience with MTX but when our doc was suggesting it he said sometimes causes nausea, dizziness etc he said take at night so sleep through the worse of it. Have I thanked my EN goddesses lately for suggesting EN and cheering us on all the way through?
 
So sorry to hear things aren't going well!!! Be safe on your trip!

Oh and if you wanna take a 2 hour detour, we can visit, have a glass of wine, maybe a cupcake but ummm...can we skip the Honey Boo Boo, they scare me...just a lil!

Thinking of you and prayers going up!!
 
Clash - everyone's different... my friend's daughter has been on metho for two years and has never had side effects :) Hopefully, C fares as well!!

Crohnsinct - hope everything's coming together for you!!! You'd want to be at your best to visit Hon... you certainly wouldn't want to make a bad impression! :rof:
 
Clash said:
So sorry to hear things aren't going well!!! Be safe on your trip!

Oh and if you wanna take a 2 hour detour, we can visit, have a glass of wine, maybe a cupcake but ummm...can we skip the Honey Boo Boo, they scare me...just a lil!

Thinking of you and prayers going up!!
Click to expand...



Oh come on crohnsinct and Clash, I'll come and we'll all visit Honey Boo Boo!
After words we would feel our families are not that dysfunctional.:ylol:

Sorry to hear about the troubles crohnsinct, you and the family are in my prayers.:rosette2:
 
Wow, I go away for a few days and you're onto another page? Glad C is feeling ok just now and hopefully the metho will get him back on track!
 
Fwiw DS was fine with the first shot.
Extreme exhaustion day after second shot.
Then it was hit or miss.
Typically if we gave the shot around 4 pm then the fatigue set in at bed and he was fine the next day.
If we gave it at 7 or 8 pm .
He was tired until afternoon.
Hope it works
 
Update: Well first dosing went well, 10 pills Friday. No side effects to mention. Stayed home Friday, went out Saturday with some friends and ate hibatchi Japanese chicken and rice, nothing spicy but still it seems Japanese would cause issues. But he spent the night at a friend's house, probably didn't get much sleep. Today, he has had 4 bms first three were D but the last one was tarry black D. Also, says he feels the urge to go but it doesn't happen for a long time which worries me since his cd was located in his TI and this sounds like more of a colonic/ perianal issue?

Now I know that the MTX doesn't work right away and his Remi treatment isn't until the 30th of October but if this continues or worsens ie. fever, ulcers, pain etc., do I call the GI nurse or just record all the info to give when I go for Remi treatment?
 
Glad there were no symptoms from the methotrexate.

I would imagine the Japanese food could have caused some of his issues. I would watch to see if it continues. If it does, I would go ahead and make a call. I know it's only 8 days, but it would give them a head's up. Besudes, we know how fast things can go crazy! It is possible, you may need to change to the methotrexate injection to get the full effect and if you call, maybe that could be changed before the next dose. With his gut inflamed, he may not get the full benefit of the pills because absorption isn't taking place.
 
I agree with jm Clash. Watch and record for now but if it continues definitely put the call in.

I hope it soon all settles for C. :hug:

Dusty. xxx
 
I also think JM is right. If this continues 8 days is a long time to wait so I would definitely call...Maybe they could move up the infusion a tad. But just so you can hide in your bubble a little longer, Japanese Hibachi always makes me and a couple other members of my family sick so maybe.......
 
The concerns never seem to go away! :ymad: I would just put a call in too... I was going to say that the stool 'symptoms' might have been his body reacting to the pills, but, reading back... he had the pills Friday and you said the tarry stools yesterday??? How were things for him on Saturday?

No harm in mentioning it to the nurse and getting her opinion...

:ghug:
 
Thanks guys, I've recorded it all in my handy dandy cd journal and if it continues over the next couple days I'm going to put a call in. C hasn't texted from school today so I assume all is well.

Tesscorm, he had one bm Saturday and said it wasn't too bad so I don't know, he seems to be feeling ok well if you exclude teenage angst and orneriness!:ytongue:
 
Hugs on the teenage angst and orneriness! :ymad: We've got that here too. I'd love to finish a sentence without hearing "Mo-ooooom, I know!" Some days it's better to just not talk to him at all. On the bright side, got mad at him yesterday and got lots of yardwork done!
 
Well my brain is completely fried from reading CD studies all day. Although, I'm not sure how much further along I am with understanding the intricacies of IBD and its treatments I'm fairly certain I've found a causal relationship between research and miagraines. I'll just be in my bubble if anyone needs me...

Btw, C was back to just one bm today, slightly fatigued but in good spirits.
 
Not a lot of teenage angst but lots of "Mo-ooooom, I know!" OMG!!!:ybatty:

I once asked my daughter, who was 15 or 16, if I put her up against the absolute, without-a-doubt, smartest 7 or 8 year old, if she would still be the more worldly/knowledgeable one and why? With one of those rolling eyes sighs, she says 'well, helll-ooo, obviously, because I'm older and they're just a kid.' I friggin' pounced!! 'A-HA, so what makes YOU think you know more than ME?!!!' :lol: I think she still huffed and puffed a bit but the wind was gone from her sails for a bit! :D
 
So we took the second dose of MTX Friday and still no icky side effects, thankfully. C stayed home from school Friday, he had three bms before he could get dressed and so I opted for a makeup day. We spent the day making sure he had all school work caught up and preparing for some upcoming exams. He ended up having 5 bms Friday, and his norm is once a day or once every other day. Things were back to normal Saturday and there was never any pain or nausea.

His remicade infusion is this Tuesday and I am ready for it, just wondering if this combo is going to do the trick and we will be in the treats for awhile(sorry couldn't resist the Halloween reference). Fingers crossed we are moving in the right direction!
 

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