# C is having symptoms



## Clash (Sep 12, 2012)

So first a little background, C started with mouth ulcers and night fevers/sweats last August. This was followed by complaints that his food was getting stuck in his chest and severe fatigue. It took until Nov. for GP to run bloodwork and see that he was anemic and it wasn't a 3 month virus(yeah 3 visits in 3 months each time dx virus with the ever accurate just say ahhh test)
There was little GI probs except for the trouble swallowing and his tummy pain didn't show up until after the MRI had revealed the thickening in his TI or Colonoscopy showed severe inflammation in TI(can't remember which but they were only a week apart). At the time, I wasn't as obsessed with poo and I think C had come to think everyone had smelly, unformed poo. Anyway dx came after colonoscopy and he started Remi and all went along fine(side note he was on pred 40mg for 6 wks before taper but ct scan showed it wasn't helping with inflammation) through the loading doses. All of his symptoms quickly went away including the pain.

Seven weeks out from last loading dose he had a few off days, didn't feel well joint pain and loose bms. It corrected itself right after infusion but GI wants to move up infusion to every six weeks and up the dose. Also his HBG, which had been rising dropped some in his lab work before infusion.

Last Thursday, we were 3 wks 4 days out from out last dose and he started having mouth ulcers, they have multiplied since then and Monday night he started with the low grade night fevers, fatigue and really bad joint pain(all joints during fevers, knees mainly when no fever) Tuesday he complained of the struggle to swallow like it is getting stuck in his chest. I took him to GP Monday and he said it could be viral but if he had to say is was CD related. Called and left message with GI Nurse today(tried to wait out viral theory but failed when he looked so bad last night) and I am waiting hear back.

So I'm a little worried as the GI symptoms didn't seem to hit C until months after these other symptoms and even at his worst it didn't really show significantly in blood work...CRP ESR etc. I'm afraid this might delay any type of serious concern on the GI's part because he doesn't seem to present with pain, blood in poo(although it did eventually occur still after colonoscopy showed severe inflammation) I mean his main symptoms before is what he is presenting now. Could this truly just be a virus...or am I wishful thinking? Ugghh I hate this disease:voodoo::voodoo:

Sorry this is so long and rambly, it's the frustration coming out I think!!


----------



## Tesscorm (Sep 12, 2012)

I'm sorry to hear about he's having symptoms! :ymad:  But, I guess we've all heard that 'virus' story too often...  sounds like you're right to check with GI.  

C's pre-diagnosis symptoms were very similar to Stephen's but their treatments have not been the same (Stephen has only been on EN to induce remission and as maintenance).

So, since their treatments have differed, not sure if Stephen's experiences would be relevant but, periodically, Stephen does have some 'off' days.  During those times, he's had (not all at once) mild fevers, loose BMs or constipation, issues with fissures, paleness, a bit of fatigue, appetite might drop a bit and some back pain.  These have all gone away after a few days (only home treatments - Tylenol, sitz baths, prune juice, etc.).   Once, when the symptoms seemed to be lasting a bit longer, I did take him to the local clinic, ran tests which showed elevated CRP, ESR and lower HGB.  I sent the results to his GI, booked an apptmt and, by the time we went, two weeks later, CRP/ESR were down and HGB was up.  So, IDK...  were these 'off' days due to Crohns or just a virus! :ybatty:   But, better to check!! :ghug:  I hope it's just a virus!!!


----------



## Clash (Sep 12, 2012)

Thanks Tesscorm, I've followed your son's story and think it is great that he was able to maintain on En maintenance and not have to move to meds. I hope the adult GI is exactly what you guys need and are expecting.

C has had those kind of days too, I call them one offs but he's not had these symptoms since before dx. I'm really hoping for something viral too. He was asleep early last night although fitful with the fever and slept til ten he just went back to sleep an hour ago...ughh but nights are the worst.


----------



## Clash (Sep 12, 2012)

But if I did ask for blood work now then viral or inflammation the CRP would be elevated, right? And before dx I associated his symptoms with the fact that he had iron deficiency anemia since that showed up on CBC but maybe it happens with ibd'ers anemia or not?


----------



## Tesscorm (Sep 12, 2012)

It's so awful that we're always on edge! :ymad:  What's that saying, something about 'once burned, twice shy'???  We went from Feb/March to May '11 hearing that Stephen had a virus, something was going around, etc. (also no blood, no pain) ..., it's hard to not completely disregard the 'virus' explanation whenever they're sick now.

And, yes, I'm certainly glad he's been able to avoid meds thus far, however, I think that's partly because his GI knew he was being transferred soon, so 'stable' was good enough (don't mean he was negligent, just that Stephen's been 'fine' so...) but his MREs do show continued inflammation and his ped GI had suggested that if ever symptoms worsened we'd have to look to metho...  but, even with the inflammation, his symptoms never worsened.  But, I do worry that the inflammation could be causing problems that just haven't shown up yet.    We'll see what his new GI says in October (and, thus will begin my LDN crusade! :arghmatey_ani

Hope C is just fighting something and you'll start seeing a bit of improvement really soon! :ghug:


----------



## crohnsinct (Sep 12, 2012)

maybe a fecal calprotectin or however you spell it would be a better indicator of where the inflammation is coming from than just blood tests...although inflammation doesn't always show in blood but does anyone know in what percentage of the cases might inflammation not show in the stool tests?


----------



## Tesscorm (Sep 12, 2012)

I think you're right...  other factors can affect CRP and ESR (and even affect HGB and WBC??).  When I took Stephen to the walk-in clinic that time (Dec), he had separated his shoulder in November, so I wasn't sure if the results reflected his shoulder or GI issues.  But I looked at the results plus the fatigue, GI symptoms, etc.  The fact that, by the time we went to the GI in mid Jan, those tests had improved didn't really prove or disprove anything... BUT if they had continued to be elevated or even higher, the GI had said we'd have to consider metho; as Jan results were improved and he was feeling better, nothing was changed.

But, as Crohnsinct said, I think stool tests are a more direct indication of intestinal inflammation.  Does C's GI run the stool tests?  Stephen's GI never did.


----------



## Clash (Sep 12, 2012)

Crohnsinct I've already put your advice on stool test in my notebook. I was just wondering about other tests because his GP doesnt do them and his GI is 3 hours away. I'm going to mention it and see if the order can be sent maybe to the hospital? Small, rural local hospital but still they could send it off.

Tesscorm, I'm not sure if C's GI does them or not as he wasn't C's diagnosing GI and only saw C after dx so there was no need for further testing at that time.

He just got up and swished the maalox-carafate mix for the ulcers. He said he was going to work on some school work but he seems pretty irritable so we'll see how it goes!


----------



## Sascot (Sep 12, 2012)

Sorry to hear about C's symptoms.  I also hope for both your sakes it is a virus.  It is frustrating though for docs to just assume it's a virus.  My son's bloods have never showed anything - before or after diagnosis. It was only the faecal calprotectin that showed up the inflammation.  Not sure about where you are, but our GP can now send away for the faecal calprotectin.  It used to be just the GI, but I think it is becoming more commonplace.  Hope he feels better soon!


----------



## Farmwife (Sep 12, 2012)

Yes clach our GP is the one that sent away for the faecal calprotectin test.
Try to ask. My doc didn't even know what it was and he still did it for us.

I hope all gets better soon.


----------



## my little penguin (Sep 12, 2012)

Might add a Rheumo to your list.
Since C sounds a lot like DS.
Gi are great at the Gi part of crohns but the EIM's
Joint pain mouth ulcers etc are more Rheumo domain.
Second the fecal test.
Your Gi could order it and fax to you . You just pick up a specimen cup at any lab corp or quest or such and drop off . No need for hospital.
Hugs hope you figure it out soon.
Our Rheumo handles all the extra stuff by phone or else we would always be there.


----------



## Clash (Sep 12, 2012)

Ok so I have been on the phone with GI nurse, ran and got labwork, and back on the phone with nurse. GI feels it is a flare:yfrown:, C has lost some weight and although his labs were decent last pull they were trending downward in HGB and ticking upward in CRP. They called in a steroid burst:ymad:,6 day pack, and moved his Remicade up to the soonest they could get him in which is Monday, if there is a cancellation sooner they will contact us.

In all the rush of info, labs and what not I completely forgot to ask about this steroid burst.:ybatty: This doc saw C after 6 weeks of pred at 40 mg and looked at the CT scan and said looks like he is getting all the awful side effects without any benefit start tapering today(The diagnosing GI had placed him on the steroids). So will a burst possible have a different effect?:confused2:

Sorry to be asking so many questions but thank you all for your advice, I did mention the stool test but the nurse said if there was any doubt on virus or flare they would but the GI was certain.

Oh and drumroll please.....absolutely no stress and low res diet. Now do I send him to school if he doesn't have fever or feels the least bit up to it or is that possibly a stressor? Why isn't there an instruction manual with this blasted disease!!:ybatty:


----------



## Clash (Sep 12, 2012)

MLP, I have been thinking that today since the joint pain was so awful last night and we are going to get the GI to refer C to a Rhuemy at his next appt!! Thanks for the advice, this committee is the best!!!


----------



## jmckinley (Sep 13, 2012)

So sorry to hear that C is not feeling well. All of his symptoms sound exactly like Ryan's. Add to that a "gray" appearance to his skin and some dark eye circles...And yes, other things like virus, sinus infection do confuse the crp and sed rate blood work.

Darn this blasted disease! It's so hard to be always on the lookout for signs and so sad when we find them!At least we know we aren't crazy being always on the watch. We are all doing the same dance! 

I sure hope things get better quickly! You are doing great to try to hit it quickly!


----------



## Clash (Sep 13, 2012)

jmckinley, yep C has the weird grayish skin color and circles although I think his circles are from the fitful fever sleep? Not sure.

C really protested the steroid pack, it seems he got every single one of the bad side effects last time. I've explained to him it being short term he shouldn't get any of those but they left a pretty bad taste in his mouth so he is balking. I told him we could call the GI and see if he could do EN but we have yet to find one he can stomach(texture not taste) no matter what I do to it. We have samples all over our house now and I've taken up supplement drinks as my afternoon snack trying to get rid of them!!

His fever didn't seem to get as high last night but the ulcers are really coming on now and bothering him. He is swishing the maalox cocktail without any prodding at this point.
It only works for a short time whereas the first go around it put the ulcers on the run. Anyone know of other treatments with good outcomes with the ulcers?


----------



## Tesscorm (Sep 13, 2012)

Sorry, no advice on the ulcers 

Poor guy, I hope he comes around re the steroids.  Although he is an 'older' kid, he is still a kid and it's so unfair they have to struggle with this stuff! :ymad:

To induce remission, EN would take longer than a six-day steroid burst but...  would he consider the NG tube?  If not, have you tried the juice-like (rather than milkshake type) formulas?  I've read of them on here...  not sure where now but I think they are made by Nestle and are called Breeze.  It may have been Twiggy930 's son who tried them???

Also, FYI, we were told the dark circles under eyes can indicate anemia.

Good luck!


----------



## Clash (Sep 13, 2012)

Ahhh the anemia makes sense...because this child is sleeping so much I really couldn't correlate it with lack of sleep so I just figured the sleep was fitful, thanks!

Yeah we've tried the juice and when I was trying to just get him to supplement I turned the drinks into shakes, smoothies etc to no avail. I did mention the ng tube to him and how alot of kids younger than him were using it and inserting it themselves. Sadly, that is what changed his mind on taking the steroids. I think I am going to ask around and see if I can find someone using it and get him to talk with them. Not for this time, as he is such a balker, but if I ease him into the idea then if this happens again I am going to push for EN over steroids. I know it would be a longer stretch but I really really really hate the steroids no matter the length of the dose!!!


----------



## Tesscorm (Sep 13, 2012)

Since you've tried the 'juice' drinks...  how were they?  Just drinking shakes would be so much easier on holidays (rather than taking the blender, pump, tubes, bags, etc.) but I'm almost certain Stephen will not like the shakes.  However, he really likes all flavours, types, brands of juice so I'm hoping these might be an option.


----------



## Clash (Sep 13, 2012)

Tesscorm, C didn't like the aftertaste. He said it felt like they left flegm in his throat. As far as flavor he didn't seem to mind that, I'm trying to remember the flavor he said tasted fairly good but can't off the top of my head. C is not usually a picky eater so I do wonder if alot of this is psychological for him. His only encounter with the shakes is when his grandfather was really sick and I wonder if that is what he is equating them to? They would be so easy to supplement with if I could just find some he liked. It would make me feel better about his nutritional intake especially when we are having times like these.


----------



## Clash (Sep 13, 2012)

Oh I think the flavor was wild berry or berry from Nestle or I could be remembering a favorite flavor of wine cooler from my college years...hmmm ?!?


----------



## Tesscorm (Sep 13, 2012)

Hmmm...  I've always found that wine, coolers, etc. to be great nutritional supplements!  They kept me going through many a day (and night)!  :lol:

Have you ever tried Carnation Breakfast shakes for C?  They aren't EN formulas, however, do have fairly good nutritional values.  I think the chocolate shakes taste great  When my kids were younger, I would split one shake between the two of them as a drink with breakfast.  As the shakes are thicker than regular chocolate milk (and are probably too filling to have in addition to toast, cereal, etc.), I would give each half a shake and dilute it with regular milk.  For a long time, they just thought they were lucky to get chocolate milk so often for breakfast!


----------



## Twiggy930 (Sep 13, 2012)

Sorry to hear that C is not feeling well.  This disease stinks! :voodoo:  Just wanted to let you know that my son also had terrible side effects from his first round of prednisone (insomnia, night sweats, moon face, mood swings, I'm sure there are others I have forgotten about) but when he did his second round of prednisone these things were not a problem.  The second round of pred he did was for the inflammation in his hip and the dosage was only high for 1 week and then he came down quickly and held at 5 mg for an extended period of time (still holding).  My son was also distraught by the idea of all the pred side effects again but with the different dosing schedule it didn't happen.  Hope the same happens for C.  

I too have a house full of supplement drinks and I have been known to reach for them when I can't decide what to have for lunch...


----------



## crohnsinct (Sep 13, 2012)

Twiggy930 said:


> I too have a house full of supplement drinks and I have been known to reach for them when I can't decide what to have for lunch...


Now which nutritional supplement are we talking about here Twiggy...the kids or ours? :lol2:

I sooo hope C's experience is the same as Twiggy's son. 

I LOVE Carnation Instant Breakfast and as a matter of fact now that I am eating clean I haven't been getting enough dairy sooo I have allowed myself one unclean item a day and that is CIB with milk so I get at least some dairy and calcium.  YUUUM! Ovaltine is another good one and for some reason it has more vitamins and minerals...doesn't taste as decadent though..but still good.


----------



## Clash (Sep 13, 2012)

Twiggy I will definitely pass this along to C because he is not liking the idea of the side effects at all...whew teenage angst on top of chronic illness...yay me!

He used to drink the carnation breakfast as a kid. I've thought about adding it back in I'll have to pick some up and see if we can handle at least some of it each morning.

Okay so we started the steroid today and the pharmacist said since the dose was so high we would probably see the "caffeine like effect" fairly quickly. Oh my goodness, he has talked and fidgeted non stop all day. We were working on school work and he was like a humming bird...constantly in motion and flitting from one thing to the next. Still feeling a little off and more bms today so I finally made him put on a movie and just rest(more for my sanity than his)

My Mom is a hard core Ovaltine believer, says she grew up on them. I think if you've had Nestle Quik you can never fully appreciate the vitaminy(new word) goodness of Ovaltine! LOL all the sugar in the Nestle Quik trumps the vitamins every time!!


----------



## Tesscorm (Sep 13, 2012)

At one point I did try Ovaltine with the kids but...  yes, the sugar in CIB won out over vitamins!  :lol:


----------



## crohnsinct (Sep 13, 2012)

Clash said:


> Okay so we started the steroid today and the pharmacist said since the dose was so high we would probably see the "caffeine like effect" fairly quickly. Oh my goodness, he has talked and fidgeted non stop all day. We were working on school work and he was like a humming bird...constantly in motion and flitting from one thing to the next.


Ah!  Maybe I need some Prednisone to get this house cleaned up.  That or a visit from Farmwife's mother...or stop drinking the mommy supplements at night so I can stay awake long enough to get something done.....Nah!


----------



## Clash (Sep 13, 2012)

Definitely don't stop drinking the Mommy Supplements as they make the bubble more invincible, or maybe us...or maybe it's just the amount! LOL


----------



## jmckinley (Sep 13, 2012)

Yes, I have over a case of boost kids essentials that Ryan won't touch. He got so sick of it this summer. Not pushing it right now as it makes him gassy.:stinks:

I read somewhere that the gray skin color was related to a biotin deficiency. Ryan takes a biotin supplement now. It helps his dry hands too! The gray skin is when everybody I know starts looking at me like I am not taking care of him :voodoo::voodoo:

As for the ulcers...I don't know if its the same, but L-lysine helps with fever blisters. And I read somewhere that the acidopholis in yogurt would help mouth ulcers.

Crohnsinct....you could mix your carnation in almond milk then the cheat wouldnt be so bad! That's what Ryan drinks his ovaltine in.

I hope C takes the pred (as much as I hate it too) and gets better soon!


----------



## Sascot (Sep 13, 2012)

Sounds like a struggle for you at the moment - gotta love teenagers.  My son had the NG tube in place for the whole 8 weeks - wore it to school and played football with it in :ysmile:.  Andrew was only 12 at the time so maybe not such a big deal, don't know if a 17 year old would appreciate it!!
Hope the steroid burst does the trick so that it makes the side effects worth while.  As for the mouth ulcers, a tsp of salt mixed in a glass of warm water (I use boiled water and let it cool) to swirl round his mouth might help.


----------



## my little penguin (Sep 13, 2012)

Hugs - DS had the mouth ulcer thing again thus week.
Swishing with Benadryl/ my manta helped some but his went down quickly.
We are big fans of Peptamen here taste horrid but does wonders for crohns.
Hope the pred works


----------



## crohnsinct (Sep 13, 2012)

haha thanks jmk but actually it is the sugar in the CIB and Ovaltine that is the problem.  Too bad...I am now hooked and gyn says I need my calcium...doctors orders and all!


----------



## Clash (Sep 13, 2012)

MLP, did you pick this up from pharmacist already combined or did they instruct you how to combine benadryl/mylanta? We are using Carafate and on the bottle it says Carafate lidocain/antac(I'm assuming this is shorthand for antacid?) This worked really great last time but I don't know it doesn't seem to be doing the trick this time.


----------



## my little penguin (Sep 13, 2012)

Ped told us just do a 50/50 mixture of benadryl/ maloax
But mylanta has same active ingredients .
I used 5 ml of each then mix and swish and spit
If you google magic mouthwash there are other recipes.


----------



## Clash (Sep 13, 2012)

So is the benadryl/maalox for coating/healing or coating/numbing because I think the carafate must just be for numbing since they don't seem to be going away...grrr. I think I'm going to try your mix, thanks MLP!!!


----------



## my little penguin (Sep 13, 2012)

It is for coating numbing .
But Benadryl is known for stopping or calming down allergic reaction .
Benadryl is an H1 blocker and maloax antacid is an h2 blocker which may explain why it helps us some what.


----------



## Twiggy930 (Sep 13, 2012)

OMG, my son came home complaining of  a mouth ulcer today and is already in bed and it is not quite 7pm...  Argh!  Not liking the start of a new school year.


----------



## my little penguin (Sep 13, 2012)

Twiggy - see if the school will let him nap in the nurses office.
That has really helped DS.


----------



## Clash (Sep 13, 2012)

MLP thanks I think I'm going to try it out see if we get better results. My hubby keeps mentioning Debacterol by prescription not OTC that he used as a child, anyone heard of this for ulcers?

Oh no, Twiggy, hope it is just a one off! I'm not liking the start of school issues either!

C has not had fever yet tonight but oh my he is so restless and fidgety! He hates this side effect and it was fairly quickly after dose. Says he still feels weird no tummy pain just unsettled. Ulcers are still there and though he says they are the same I think may be getting a little better as he is eating more, could just be the coating med. Also the crazy appetite started, he's hungry a lot but it is like eyes are bigger than stomach because he isn't finishing off meals
So awhile back we had to see a fill in GP for what I thought could be sinusitis but there was no fever and he proceeds to tell me that you don't have fever when on high doses of steroids, I didn't question it just, whatever and moved on since it wasn't sinusitis. But can anyone shed some light on this? It didn't seem likely to me but hey I don't have a med degree.


----------



## my little penguin (Sep 13, 2012)

You should not have a fever . The word is should since if you do then there is a large infection potentially. Pred reduces your bodies natural immune response ( which includes fever to fight off infection) . Make sense.
No medical degree here either just ine tired mom.


----------



## Clash (Sep 13, 2012)

Oh ok so the pred may be why C is not exhibiting the night fever and not necessarily due to an improvement but more of a medication response? I'll take it regardless! Really hate the night fevers!

I'm hoping to one day have the research skills and knowledge you and the other members have though I'm so sorry any of us are in a position to need them! Hugs to ya MLP!


----------



## DustyKat (Sep 15, 2012)

Hey Clash,

I am so sorry to hear of the troubles that C is having...:hug: 

Matt suffered with mouth ulcers prior to me ever dreaming that he would develop CD. At the time I researched quite extensively and decided on B Complex as a treatment. It did work well for him. Speaking of anaemia, fatigue and B vitamins, has your lad had his B12 levels tested? Particularly in view of the fact that he has TI involvement. I would also have Folate, Iron Stores and Vit D done if not being monitored already. 

@crohnsinct, this may be of interest to you...




> Concentrations of fecal calprotectin, lactoferrin, and CRP have each been correlated with histologic and endoscopic disease activity in patients with UC and CD (Table 2).47–57 In general, calprotectin and lactoferrin correlate better with colonic than ileal disease activity, although extent of colonic disease does not appear to be important.47,49,52 The sensitivities of tests for calprotectin to detect any active mucosal disease range from 70% to 100%, with a specificity range of 44%–100%, depending on the cut point used.48,50,55–59 Sensitivities and specific- ities of tests for lactoferrin are similar (Table 3).
> Serum biomarkers, particularly CRP, have also been used to distinguish quiescent from active disease. In general, the correlation between CRP and endoscopic activity is lower than that observed between fecal markers and activity (Table 3). Similarly, sensitivity and specificity for active mucosal inflammation is likely to be lower for CRP compared with fecal markers. For example, Solem et al observed that the CRP test had 54% sensitivity and 75% specificity for CD in 105 patients.60 In a study of 43 patients with UC, 19 of 37 (51%) with active disease, based on colonoscopy analysis, had increased levels of CRP, whereas 0 of 6 patients without endoscopic evi- dence of disease activity had increased levels of CRP.60
> Perhaps most importantly from the perspective of a cli- nician, 37 of 43 patients (86%) with any clinical symp- toms of CD and with increased levels of CRP had evi- dence of mucosal inflammation, based on colonoscopy analysis.60 Therefore, for patients with CD, the combina- tion of increased levels of CRP and clinical symptoms is likely to be sufficient to identify active mucosal disease. Some patients have persistent, normal levels of CRP de- spite active disease.61 For these patients, CRP will not be useful to differentiate quiescent from active disease. This may be a population in which fecal biomarkers are par- ticularly useful.
> 
> http://ibdsupplements.org/IBD/pdf/special/4.pdf


I hope your boy is able to find relief soon, bless him. 

Dusty. xxx


----------



## Clash (Sep 15, 2012)

Thanks, Dusty! Last infusion I asked to have his vitamin D levels checked and they came back low normal so the GI wanted C on supplements. The GI wants the levels around 500 and they were at 234 if I remember correctly. His HBG was low, a tick below the normal range at 10.4 labwork before last but I don't think his ferritin levels were checked and the last test(I didn't see these results will pick them up at infusion on Monday) the nurse states his numbers looked good. He goes for infusion Monday and they are going to check his B12 and folate.
I haven't seen any of his latest lab work the latest I have is for the last time he had a little blip which was again 4 weeks out from an infusion. At that time until I mentioned symptoms(just loose bms no fever, ulcers, joint pain) the nurse said his results looked decent. At that time his HGB was a tick below the normal range at 10.4 and CRP was .96 mg/dL range 0-.32 mg/dL so neither seemed to off(right?) but with symptoms they were talking about tightening the schedule.

So besides b12 and folate I should ask for iron stores and since C's involvement is ileal then fecal calprotectin might not be as useful? 

Thank, Dusty for all your info and advice. His ulcers are starting to improve, but yesterday his bms were a really light colored khaki which isn't normal for him. I'm really hoping the pred is going to knock him back inline and the upped dose and tightened schedule of Remi will do a better job of keeping thinks at bay.


----------



## crohnsinct (Sep 15, 2012)

DustyKat said:


> @crohnsinct, this may be of interest to you...
> 
> Dusty. xxx


Aw shucks Dusty.  How did you know I am obsessed with all things poo!


----------



## DustyKat (Sep 15, 2012)

See! I made your day crohnsinct! :ybiggrin: and for the icing on the cake... 

@Clash. I felt with Matt an Hb that sat chronically a snig below reference range normal had him fatigued. I know he had loads else going on but I still felt it was an impediment. Another thing to keep in mind is with the reference range used they are likely giving the full range. What I mean by that is it is women that normally sit at the lower end of the normal range and men at the higher end. So a woman's normal range may be 11-14 and a man's 13.5-16. This will differ depending on the value range they use. 
If the CRP is matching the symptoms and the doctors have cause to act upon it then a calprotectin test wouldn't be necessary. If however the CRP was elevated but not to the levels of symptoms and the docs thought it he was okay but you didn't then I would request the calprotectin. 

My daughter was one for which CRP was useless, always normal, but I personally think there are also people for which a CRP may be elevated but not significantly so they also fall into that category of the test not always being a true indicator of disease activity but that is only my perception of things. 

I would ask for Iron stores because the body will constantly try to draw on them in an effort to keep the status quo and stave off anaemia. 

Good luck and best wishes to you and your boy...:hug:

Dusty. xxx


----------



## Tesscorm (Sep 15, 2012)

Dusty,

On a blood test, what is the difference between Iron and Ferritin?  Stephen's blood tests have HGB tested always, Ferritin sometimes and Iron (blood) only once.  The one time the Iron was tested, his results were Iron 6.4 (min 9), Ferritin 14 (min 10) and HGB 133 (min 140).  

So when you say to ask for Iron stores, do you mean Iron or Ferritin and why would one be low and the other at the low end but within range?

Thanks!


----------



## crohnsinct (Sep 15, 2012)

Oh we are making Dusty work for her money today!  That will teach her to go on holiday for so long! 

Remember that Tess...your turn is coming!


----------



## Tesscorm (Sep 15, 2012)

Ahhh but when I'm away, no one will miss out on any expertise!  When Dusty's away, we're all hanging by a thread!  :lol:


----------



## DustyKat (Sep 15, 2012)

Ha! So much for a lazy Sunday morning! :lol:

Iron is a metal complex and Ferritin is a protein. 

Iron is what is circulating in the blood to provide the body with what it needs to function and ferritin is the protein contained within the cells in the parts of the body that store the iron. Iron Stores/Studies is a catch all term we use here for blood testing, not sure if it used elsewhere, that tests Iron, TIBC, Ferritin and Transferritin.

To help diagnose the type of anaemia someone may be suffering it is important to look to Iron, Ferritin, Transferritin and TIBC (Total Iron Binding Capacity) and their relationship to each other in the results. 
A low Iron result on its own may not be of significant value particularly in adolescents but in view of Stephen's disease a low haemoglobin, low iron but normal ferritin muddies the water a bit. A low iron and Hb would lead one to go straight to iron deficiency anaemia but with a normal ferritin level I wouldn't be ruling out anaemia of chronic disease. 

Dusty. :hippy:


----------



## Clash (Sep 15, 2012)

Tesscorm don't try to down play your importance in all questions IBD you've already been pegged as a guru in our book so now getting out of it now!!!


----------



## DustyKat (Sep 15, 2012)

That's right Tess, you are no slouch when it comes to IBD! :worthy: 

Dusty.


----------



## crohnsinct (Sep 15, 2012)

^^Ditto^^ plus we will all be hanging on a thread waiting to see what amazing delicasies they served at the midnight buffet vienese table.


----------



## Tesscorm (Sep 15, 2012)

:rof:  Okay, I think you guys are just associating 'answers' and 'Tess' and the reason you are making that association is because I read one thing and the gears, slow as they may be, start grinding... 'wow, I didn't know that!  hmmm, now why would that happen?  And what would happen if you looked at it from the opposite perspective?  And what if no GI has ever thought of this???" :lol:  So, it's not that I have the answers, I just have all the questions! :ybatty:

Why would I need to tell you about the amazing delicasies?...  I thought you were all hiding in my luggage!  

Thanks Dusty re the iron...  one more piece of the puzzle just clicked! :applause:  only 99,999,999 to go!


----------



## Farmwife (Sep 15, 2012)

Tesscorm said:


> Why would I need to tell you about the amazing delicasies?...  I thought you were all hiding in my luggage!
> 
> QUOTE]
> 
> ...


----------



## Tesscorm (Sep 15, 2012)

:rof:  :rof:   Yes, she was quite quick to point out that ice cream wasn't 'clean' on your other thread! :tongue:


----------



## crohnsinct (Sep 15, 2012)

Ah yes but don't you think the chef on board would like a loud mouth Italian broad from NYC telling him what to cook and how...I can see the vienese table now...and I mean table...as in 1!  One lonely table of some fresh fruit and a smattering of nice clean avocado chocolate chip muffins...

FYI - Roman Catholic church fair two doors down from my house.  I just downed 1 slice of pepperoni pizza, a slice of sausage peppers and onions and about 20 fried dough pieces with powdered sugar...o.k. and yeah well a glass or two of cab.  Yeummm!


----------



## Tesscorm (Sep 15, 2012)

Don't forget the 'seat for one' at that one lonely table! :lol:


----------



## Clash (Oct 3, 2012)

So we had our Remicade infusion about two weeks ago and things had started firming up after a couple of days of really bad D. He was feeling fine again and then last week he started having a new issue. When he eats(not every single time but fairly consistently) he ends vomiting part of it back up, I wouldn't even call it vomiting as he says the last bit just doesn't go down, he feels nauseated then up comes some undigested food. He feels fine afterward. I had put off calling the GI nurse since the Remicade treatment was only a week before. Last night he had some sharp pains around the TI area, he even asked was that where his TI is when he was telling me about the pain, because he felt the pain was crohn's related. He was also complaining of joint pain again, in his right knee and lower back. He just texted from the nurse office and said he was having severe joint pain and was going to take some tylenol. I've put a call in to the GI nurse and I am waiting to hear back. Ugghhh...typed all this out so I could use some of these:voodoo::voodoo::voodoo: on this damn disease!!! Ahhh...that feels a little better. And btw where the heck is crohnsinct??? I'll update when the GI nurse calls back.


----------



## Tesscorm (Oct 3, 2012)

Sorry to hear! :ymad:  I hope it's something that can be easily fixed!!!  Stephen complained of a similar sensation of food not being able to go down weeks before he was diagnosed.  Although I'm sure it's crohns-related, his GP prescribed nexium at that time and it fixed the problem (of course, until more Crohn's issue came to the forefront!)

Does C take any Nexium type meds?  Has he ever?


----------



## Clash (Oct 3, 2012)

Tesscorm, that is why I didn't initially call the GI nurse. When he had his colonoscopy before dx, it did show he had gastritis and they prescribed him Nexium he was on it for about 3 months. At that time, he had this weird trouble swallowing issue and the nexium did nothing to combat that not until he started the Remicade was that resolved. But I was thinking that this might be the gastritis making a comeback and was planning on getting the nexium refilled, his GI has been on vacay and I was going to hold out until next Monday when he got back so I could have a couple questions put forth to him also. Since the joint pain started I felt I had better go ahead and call and give all the symptoms.

Background: So the diagnosing GI put him on Nexium and said it wasn't Crohns related, the Ped GI said that even though there were no granulomas present it was still related to the Crohns and when the remicade did such a wonderful job out of the gate he said no need to refill nexium for now.

How is Stephen doing? Not to much longer until the new GI appt now huh? I really hope this GI is on board with trying the LDN!!


----------



## Tesscorm (Oct 3, 2012)

Re the nexium, my brother-in-law had severe 'something' (I think it was GERD), where the acids in his stomach, over the years, had done so much damage to his esophagus that they had to completely remove it!  They had to 'stretch' his stomach and use that as an 'esophagus'.  And, my husband has issues with acid as well (although much, much less severe than his brother) so, when Stephen complained about food not going down, a bit of heartburn, etc. our first thought (and that of his GP) had been the acid reflux issue.  

But, Stephen's doing well...  he's annoyed with me :lol: because I haven't let him do any weightlifting for a couple of weeks because he's having his liver enzymes tested tomorrow and a found a study that showed weightlifting specifically can affect liver enzyme levels.  Apparently, he's losing all his muscle and it's all because of me!  Totally inconsequential that the blood test was delayed a week because he was going to his friend's dorm and GP said if there was going to be ANY drinking, he would prefer to delay the enzyme testing...  Stephen's neglected to consider that he chose the option to have a couple of drinks and delay the test. :lol:

(GI apptmt is Oct. 17!)


----------



## Clash (Oct 3, 2012)

Don't you just love teenagers! C becomes argumentative about meds and vitamins at times. Nexium didn't relieve his swallowing issue but the Remi did so in C's mind the nexium was useless and he would just not take it consistently. He is very cause and effect related and you can't get across to him that more than one thing can be the cause or the effect. Ugghh, that child sees in black and white...which I guess goes right along with the fact that he is truly color blind...don't get me started on his inability to match what he is wearing due to this!!

Good luck on the appt!! LOL you evil Mom taking away all his muscles!! Hope the liver enzymes tests!!


----------



## Tesscorm (Oct 3, 2012)

Stephen does notice the consequences when he doesn't take his Nexium although, in his case, it may simply be because when he has his formula overnight, through the tube, the tube creates a small opening (on the 'flap') between his stomach and esophagus so fluid/acid can come back up.  Once in a while, he's forgotten the nexium before bed and he can feel the difference in the morning.  But, if C doesn't really need it (excluding now perhaps...), nexium can have a negative impact on calcium levels/bones so, perhaps, just as well he can avoid another med.  Certainly not the worse med out there by a long shot! but still wish Stephen didn't need to take it every single day.


----------



## Tesscorm (Oct 3, 2012)

Poor C being colour blind!  Does it have much of an impact for him???  (Dumb question???  I just don't know anyone who is colour blind :blush


----------



## Clash (Oct 3, 2012)

For the longest time, I just thought C wasn't trying hard enough to learn his colors. I didn't understand it because he always did well academically but when it came to colors it always seemed like he was guessing more than telling. Finally, around 4th grade we were out at the ball field with my daughter and I was talking to a friend that works with the visually impaired and C had on this gaudily matched outfit that I couldn't convince him didn't match. She took one look and said oooh that boy is color blind and if I took a guess I would say he was "some long unpronouncible scientific name". I questioned school couselors, teachers and ped about having him tested but they all felt like he was compensating well and no need to have it done. Sadly, I never did and I kick myself for it. He has an upcoming eye appointment and I think I'm going to go ahead and have it done.
Matching clothes, school work sheets that have some kind of color code to differentiate labeling that he has to fill in, haha poo checks for blood haha, are some of the things I can think of. Names of colors mean very little to him.

I had no idea about the calcium issue with nexium thanks for that information!


----------



## Tesscorm (Oct 3, 2012)

Wow, I hadn't ever considered how often 'colour coding' does come into play... poor guy, I suppose over the years, he has found a way to compensate for it but must be annoying for him at times! :ymad:

The nexium/calcium issue, I don't think is a problem when it's used short term.  I think it's something that needs to be watched if you use it for a long time (I think the side effects state that it becomes something worth monitoring if you use it for longer than 6-7 months at a time.  My husband has used nexium for years with no problems but...  In addition to the calcium he has in the EN formula and normal diet, we were also told to give Stephen a calcium supplement to offset the effect of nexium.


----------



## EthanClark (Oct 3, 2012)

Clash,
This may be a little late of a response to the mouth ulcer relief question as I am new to the forum but I have found something that works great for me. I am always on the lookout for natural remedies as I do not take the big drugs the Doctors would like me to. I have been reading alot from Jini Patel who wrote the book Listen to your Gut and followed her wild oregano protocol for candida infection and also for my mouth ulcers. As soon as I feel ulcers coming on I add 5 drops of oreganol oil to my mouth full of water. Swish and hold as long as possible then swallow. Ulcers are gone in a day. The oil is hot and you will want to add it to water to be able to take. The oil is also an anti fungal and natural antibiotic. After treating with a very heavy dose to kill the candida I felt the best I have felt in years. Which reminds me I should do another treatment. LOL. It hasn't been tested on children younger than 5 so I haven't yet tried it on my 3yr old son for his symptoms. Also I believe it can be a little hard on your liver if your son is taking other strong meds that affect his liver you will want to check with the doctor. At the very least though he could swish and hold then spit the rest out. It also worked great when my husband had a very bad abscess in his tooth. Took the infection and pain away very quickly. i would recommend the brands North America and Joy of the Mountains as it seems they have the correct mixing with other oils to work well for those with IBD. PLease let mek now if you have any questions. Maybe this will work for your son. :ysmile:


----------



## Clash (Oct 3, 2012)

EthanClark, we were actually trying that thanks to another member on here, Crohnsinct, but it didn't help his ulcers at all. Initially he was using drops under his tongue for allergies but when the ulcers arose we did try the swishing for several days to no avail. Thanks for the suggestion though!!


----------



## Farmwife (Oct 3, 2012)

Clash don't worry about him being color blind.:wink:

My Uncle is very color blind. 
He was a career Amy man. 20 plus years.
We were teasing him about how dangerous it was
 to have him on the roads because of it.:biggrin:
To which he sternly replied.
 In the army the missiles are color coded.:ywow:
My dad about spit out his teeth, my mom about fell over 
and my Grandma in her quiet voice said,
 Billy stop telling people that, it scares them..:shifty:


EthanClark, My doc thinks Grace might have Candida and as a last ditch chance to "cure" her, he's put her on a three weeks of Diflucan. We also are naturalist and so is or doc. However he said since her levels were high and she's still having problems, he wanted her on this. I know that Oregano is great for that stuff, I meant try it. Thanks.


----------



## my little penguin (Oct 3, 2012)

Just an FYI -
DS also has vomiting issues and gastritis when the vomiting starts again we know his crohns is not under control.
The food getting stuck is a whole other can of worms .
There is such a thing called EoE( eosinophilic esophagitis) which has vomiting , reflux, strictures and other issues in the esophagus and stomach.
When the upper egd was done they would have had to take biopsies in specific location to look for it. Then the slides would need to be done with a count of EOS.
The treatment is swallowed steroids and or elemental diet so you could have been treating it without knowing.
Just something to ask the GI about.


----------



## jmckinley (Oct 3, 2012)

Hey, Happy Belated Birthday to C! Vroom, vroom!

I feel your pain about the driving! Ryan is 15 and I will be in your shoes in 6 months!

Ryan and C sound very much alike. Ryan is a " black and white" thinker. He is argumentative to the extreme, just locks in on his point!

 On a crohn's note, R gets that crazy feeling in his throat where it's hard to swallow. That was one of our first signs that something was going on pre-dx. I don't have any solutions since we were stupid and ignored it for a while before he was finally dx'd.

Hope he is feeling better soon!


----------



## Clash (Oct 3, 2012)

jmckinley, how are our boys so much alike?!?! The throat thing was one of our first signs too and we did the same, C would mention but for the most part we ignored but eventually when ulcers, nighttime fevers popped up we went to doctor. He actually isn't having the throat problem now at all.

MLP, I know at the time he had the throat problem during diagnosis journey, the GP kept mentioning dysphagia in connection with his anemia but by the time we were at the GI the swallowing issue had given way to all the GI problems and was never mentioned again. He hasn't had the swallowing issue since that time before diagnosis. This vomiting/gagging thing is more like the last bit of undigested food just comes back up but not the rest of the meal he has eaten. He says he just feels it is going to come up it does then all is fine. I don't know what to think of it. The GI nurse called and got all the info and said she was calling the doc and would get back to me.

Farmwife-  Oh my...WAS meaning he is retired now right? LOL!! C was really interested in ROTC in college but I guess that isn't an option now since if you have CD they won't let you in. 

Thanks you guys for all the advice and info!! I'll update when I hear back from nurse.


----------



## Clash (Oct 3, 2012)

So the GI nurse spoke with the GI and he wants to start C on methotrexate, I told the nurse I want blood work and a fecal calprotectin test done to see where the markers are before making a decision like that. 
His blood work before the last Remicade infusion on Sept 17th looked great the GI nurse said but that infusion was the one we had to move up to five weeks due to the night fevers, ulcers and fatigue. So I'm just not sure what to think, if it is not showing up in the blood work then maybe it will in the calprotectin test, but if there is no inflammation I would be hard pressed to add mtx. What do all of you think?


----------



## my little penguin (Oct 3, 2012)

Personally not a big fan of " it must be in the numbers " to treat club.
If that was the case DS would still be a walking mess .
If you had to move up Remicade and he is having vomiting issues etc... Your overall risk is not really increased that much by Mtx but the benefit you are seeing by Remicade only right now is not that great compared to the risk.
I would like to think I would add the Mtx . We are not in that position yet for DS .
We dud have him on Mtx and it was not that big of help but didn't have any real side effects other than fatigue so I would go for it.

Need to try to keep the gut healthy as long as possible


----------



## Clash (Oct 3, 2012)

Maybe your right, this is just so different from his original flare, or the second minor flare, there are no ulcers, night time fevers, or gi issues like before. And it's not like vomiting, it's always on his last bite and it just won't go down and that bite comes back up undigested, oh and the nurse did prescribe nexium, she said to cover in case it is acid reflux building up. He says he's fatigued but says doesn't feel like his CD fatigue and that he thinks it is because this joint pain in his knees and back keep him up all night and he is just worn out the next day. He also says he feels good, just like after his first ever remicade infusion, except for joint pain except no CD ickiness feeling. Before they add the mtx I wonder if seeing a Rhuemy wouldnt be best or at least see what effect the nexium has on this weird last bite coming up issue . I think you suggested the Rhuemy before and GI and I agreed to put it off until we saw what this shortened schedule of remicade did. It just seems except for the joint pain he is doing good and no where near the way he was at dx or even during that second flare. Ughhh...I really hate this disease and I really want that calprotectin test to see if any inflammation shows up I would jump at the chance for an MRE!


----------



## my little penguin (Oct 3, 2012)

Ok makes more sense now.
Can the you have the old slides read for EOS count ?
That really sounds like EoE it can episodic in nature and only triggered by certain food after many exposures. Left unchecked damage to the esophagus by adulthood.
I also thought he had seen a Rheumo .
Definitiely see one.
However our rheumo sees joint pain as eim meaning even though the Gi stuff was under control we still had to treat it with more ibd meds.
Of course his joint pain could be something else.


----------



## kimmidwife (Oct 3, 2012)

Sorry to hear C is having issues again. Caitlyn was on methotrexate for almost two years but not together with remicade. She had no real side effects from it but it stopped working for her. I agree with you being nervous to use both together unless there is no choice. I think I would try to push him to really give the nexium a good try before giving up on it. Caitlyn has been on it for four years. I do worry about the bone issues and am planning to ask the new doctor what he thinks. I was personally on Prilosec for four years and finally aned off it. It took some time as you get rebound heart burn at first but finally managed to get off it taking Zantac instead which is safer.


----------



## Clash (Oct 3, 2012)

I don't know, I think I'll ask about the slides and EOS count when the nurse calls back.  No, no Rhuemy yet. I'm going to ask to be referred though.

Oh and meant to say I don't really trust the lab work either when he was diagnosed it didnt match at all with the severity of the inflammation on colonoscopy but I would like to see what a calprotectin read.

Thanks MLP, I may have some more questions about EOS count and EoE after I research


----------



## my little penguin (Oct 3, 2012)

http://apfed.org/drupal/drupal/index.php




> Symptoms of EGID?
> What are the Symptoms of EOE?
> Symptoms vary from one individual to the next and may differ depending on age. Vomiting may occur more commonly in young children and difficulty swallowing in older individuals. SYMPTOMS MAY VARY GIVEN THE DEVELOPMENTAL ABILITY AND COMMUNICATION SKILLS OF THE AGE GROUP AFFECTED. It is not unusual for it to take several visits to the physician before eosinophilic esophagitis is diagnosed. Some symptoms are common to all age groups.
> 
> ...


----------



## my little penguin (Oct 3, 2012)

http://community.kidswithfoodallergies.org/displayForumTopic/content/3682717251713964

One more link about EoE a mom's perspective .


----------



## Clash (Oct 3, 2012)

Thanks MLP, I'm definitely going to pursue this with GI.


----------



## Tesscorm (Oct 3, 2012)

Ugghh, so sorry that you didn't get better news!!!   I so feel for you, these choices/decisions are horrible to make.

I think trust your gut...  I know active inflammation is not a good thing and that more can be going on that you aren't seeing, however, if he's looking good/healthy to you and he's feeling 'okay' (I know he's not 'great'), then maybe you have a bit of time to think and research before making a decision, ie , tests, EoE and rheumi.  I certainly don't want to discourage you from following the GI's recommendation, just understanding that we/you/me/all of us will be most comfortable/assured making any decision re meds once we've considered all options.

Would he consider supplemental EN? (You knew the question was coming! :lol  I think this is the situation Crohnsinct was in, something more needed to be added to the remicade and she went with supplemental EN.  I'm sure you said he's tried it before but I can't remember if he continued with it for a period, or did it as a supplement 'sometimes'???

Thinking of you... :ghug:


----------



## jmckinley (Oct 3, 2012)

Has the GI done a HACA and Remicade level test? When Ryan was on remicade only, the GI ordered these tests. The blood has to be shipped to Prometheus labs in California and takes a little time, but it's well worth it. HACA tests to see if the body is building antibodies to the remicade and the other tests how much remicade is actually still in the system.

In Ryan's case, he was already building antibodies after only 4 remicade doses and he had no detectable remicade in his system 2 weeks after infusion. The GI then added methotrexate to slow the antibodies down and increased the remicade dosage. We just had the test done again 2 weeks ago and the results were much better. This time, Prometheus actually scheduled for someone to come to us to draw the blood and send it off. 

The methotrexate is helping Ryan's body "utilize" the remicade instead of attacking it. The only side effect we have is that he is very tired for about 2 days after the shot.


----------



## Clash (Oct 4, 2012)

Tesscorm, I have all the studies and anecdotals from here on EN and plan on going to GI with them. If the nurse calls back and says doc doesn't feel labs and calprotectin are called for I'm going to tell them before I consider MTX I want an appt with GI. I'm going to bring up everything then. I know I will be hard pressed to get C to do EN but I'm still going to push.

Jmckinley, you know I've mentioned wanting those tests before to GI when the dosing schedule was going to be tightened. I would love to get them. From our last visit with GI I get the overwhelming feeling that GI treats IBD symptoms, if your kid is still having symptoms then meds need adjusting, adding, changing etc. and I agree I would just like to know exactly what is going on and I am going to ask about he HACA and Remi levels test again. I know ins. may not cover it but I am cool with that. If it is his remi levels or antibodies issue I agree and think the route you guys took is absolutely the one I'd go for.

Here's the thing I call the nurse list the symptoms she calls back 4 hours later with adding mtx. That freaks me out a bit I mean sight unseen, tests not done, no questioning of C about exact symptoms...I told my hubby what if I was an med attention seeker or munchausen by proxy patient LOL!!! C would be all drugged up with nothing more than a phone call. I'm being silly of course, but it does freak me out a bit.


----------



## Tesscorm (Oct 4, 2012)

Totally agree with you!!  I certainly wouldn't want to add meds without a visit, questions, testing, etc.! :ymad: Hadn't thought about that as I read your posts.

Now... motivating C...  not sure if these help but I know these two reasons play a part in motivating Stephen to stay on EN.

Don't get the wrong impression of Stephen here... :lol:  He's not a big drinker  but I know he enjoys a drink or so when he goes out with friends.  I think a motivating factor for Stephen to do the EN is the fact that, if we did metho instead of EN, his drinking (as little as it is) will have to be curtailed.  

Also, since the Spring, Stephen's been much more interested in 'bulking' up, weightlifting, etc.  He believes that the nutrients (proteins) he gets from the formula have been a big help in this.  He says he is able to build muscle much quicker than any of his friends - he credits the formula for this.

Hopefully, this might help...???


----------



## Clash (Oct 4, 2012)

I absolutely don't have the wrong impression of Stephen, my daughter is 19 and at college so I absolutely get that side of it, though it doesn't apply to C right now, I'm sure it will come in to play at some point during his high school years. The bulking up is a good motivator and I will definitely employ that tactic. Another hurdle, actually a few, C's issue from the beginning was the drinks make him gag we have tried numerous brands and I'm still finishing off samples from it, C can't stand the texture(thickness,phelmgy feel) and most tastes. If I could find one he could drink during the day and then would the ng tube be an option for evening/night only because I think this would by my shot at getting him on board if we can just find one he will tolerate to drink during the day.


----------



## Tesscorm (Oct 4, 2012)

Clash said:


> If I could find one he could drink during the day and then would the ng tube be an option for evening/night only because I think this would by my shot at getting him on board if we can just find one he will tolerate to drink during the day.


Not sure what you meant above???  Did you mean he would drink some during the day and the balance overnight?  If yes, then it would certainly be possible to drink some during the day and some at night.

But, if he's willing to try the tube AND he really doesn't like the drinks, I would suggest having it all overnight by tube.  Why struggle with drinking something unnecessarily (drinking during the day) when the same thing can be accomplished while sleeping? :lol:  There is absolutely no way Stephen would prefer to get rid of the tube and have to drink the shakes during the day.  (The only exception to this is when he goes on his 'belated' grad trip June 2013 - I'm going to send him shakes instead of the tube, pump, etc.)  Stephen's even taken his tube when he's gone for an MRE so he wouldn't have to drink the prep (in the end, he drank it as he didn't find it tasted too bad).


----------



## Clash (Oct 4, 2012)

Okay you answered my question, C can't stand the drink but is adamantly against wearing the ng tube at school so I was wondering could he just do the ng tube evening and night or would he also have to supplement with drinking shakes during the day?


----------



## awmom (Oct 4, 2012)

I'm glad you are waiting to see the GI before starting new meds.  You would think if anything they would want to discuss not only his symptoms, but also options and possible side effects, needed labs, etc.  Our doc once prescribed prednisone only to call 3 days later, after his labs to say "never mind." I have been trying to convince my son (17yo) to also do tube feedings at night just to gain a little weight....he says absolutely no way!!!!  His GI also talked about placing a "button" from which he can get feedings but I have not done much research.  The only thing he can drink is something called Absorb Plus which comes in powder form and to which you add fat as tolerated so you can control the texture to some extent.  We put coconut oil in it, or you can use flax oil.


----------



## Tesscorm (Oct 4, 2012)

Everyone's different but Stephen really found the tube insertion easy (removal is really easy).  The 'gag' reflex is what I think is the most difficult to overcome.  Twiggy has also made the point that doing it 'yourself' is perhaps easier than having someone else 'blindly' insert it as you will be able to feel when/where to go slower.  Also, tube size may be an issue - Stephen (and I think Twiggy's son) uses 6-Fr, which is infant size but does the job.  Some people also find one nostril is easier than the other; apparently, there is no absolute necessity to change sides, Stephen does it in his left side every day.

If it is exclusive EN (no other food), some GIs allow other clear fluids, some don't.  Stephen's did so he was allowed broth, clear pop, clear juice, jello, popsicles, etc.  I recently read somewhere (Dusty recently posted an article I only skimmed - maybe it was there, I can link it if you'd like) and it made a point that if the exclusive EN is done overnight, allowing clear fluids during the day may help in ensuring that the patient is receiving sufficient fluids.  One negative to overnight feeding when doing exclusive EN is that there will be some hunger during the day (especially towards the evening) as you are only fed at night.  The broth, etc. alleviates that a bit...  

The Kids on En thread includes a link of a young girl inserting the tube - she does a good job of showing all the steps, however, she does make it seem like it has lots of steps and is a long process.  It literally takes Stephen 10 seconds to do it all at night.


----------



## Clash (Oct 4, 2012)

I will look into the Absorb Plus, thanks for the info. I think if I could get C past the inserting of the tube he would be okay but it is just getting him there!LOL


----------



## Tesscorm (Oct 4, 2012)

What?  Your 16 year old boy doesn't do exactly as you tell him to do???  :lol:

I think something that ABSOLUTELY helped in Stephen learning to insert the tube is that we weren't given any option.  No one ever told us that there were shakes he could drink, so in his mind, he had no choice but to do it...


----------



## Clash (Oct 4, 2012)

Dang it...wish I could rewind!! But yeah I think it is really going to come down to you have no option that is if the GI is on board, because you know teens, if the Doc is wavering they have a leg to stand on and argue til Farmwife's cows come home! 

Update: Nurse called and GI doesn't want to do blood work since it was just done two weeks ago but have the go ahead on fecal calprotectin!!! So headed to pick up the hat and container now. Secretly, I've been jealous because we never had a hat and I felt left out of the inner poo circle...hmmm I may have to decorate the hat before use to commemorate the occasion!


----------



## Tesscorm (Oct 4, 2012)

Farmwife's cows don't come home!!!  They're too afraid of her cow-tipping activities! 

Glad you're getting the FC test done!!!  Hope it comes back with good results!

hmmm...  decorate the hat???  C's favourite band, sports team...  maybe it's a project the two of you can work on?!?    NOT!!! :lol:


----------



## Farmwife (Oct 4, 2012)

Ha Ha Tesscorm, trust me the cows aren't afraid of the cow tippin...

Excuse me while I go eat my steak.:eek2:


As my bumper stickler reads:
I believe in animal rights, they have right to be on my dinner plate.:rof:


----------



## Tesscorm (Oct 4, 2012)

:rof: :rof:  What a meanie!!!  :lol:

I'm a little bit afraid to eat any steak right now in Canada with all the e.coli recalls!!!     (hmmm... think it was one of your cows that started the e.coli rumour :lol


----------



## DustyKat (Oct 4, 2012)

I wholeheartedly agree with waiting before adding Meth based on one phone call. 

Living in a rural area I understand that a number of people tweak their meds by consulting over the phone but not add new ones in of the calibre of methotrexate sight unseen. To me the very least you should have when starting a new med is decent up to date baseline numbers, otherwise how do you track progress? 

I don't agree with the docs opinion that it is not worth retesting bloods because they were only done two weeks ago. All manner of things can happen in two weeks when symptoms are present but at least they are doing faecal calprotectin.  

Good luck and happy hat decorating! 

Dusty. xxx


----------



## Clash (Oct 4, 2012)

Thanks, Dusty. And I agree with you on the blood tests. When I called the GI nurse to leave a msg for the fax of the closest lab that does calprotectin I told her I also wanted to make an appointment to see GI that regardless of test results there are some questions and concerns I have that need to be addressed even if the calprotectin test results show inflammation. I am going to insist on a blood test for base line and ask for the most conservative view of scheduling lab work once mtx is introduced. I just need to go back through the threads and see what that schedule is. 

It is the end of the half sememster at C's school so all work for this qtr has to be in by Friday. Due to C's absences through this quarter and conflicting schedules C had alot of tests and quizzes he was going to have to make up this week. We counted it up and including make up quizzes/tests and current quizzes and tests by Friday afternoon he will have taken 9 tests and quizzes this week. Now if that doesn't cause stress I'm not entirely sure what will!!! I am in touch with the 504 director and she is working on a more effective and reasonable way to make sure these tests/quizzes don't pile up on him.


----------



## DustyKat (Oct 4, 2012)

Good lord! I hope the director does something to alleviate that in the future! :yfaint: Poor love.  

I'm not sure what the schedule is for Methotrexate but I don't imagine it would differ greatly from Imuran/6mp?? Either way when you get past the baseline and fortnightly etc I wouldn't pan out any further than every 8 weeks. Just sayin' :lol: 

Dusty. xxx


----------



## Clash (Oct 4, 2012)

That was just the question I was going to ask! I thought you had mentioned before you wouldn't not go beyond 8 weeks. I'm going to print out David's Methotrexate article he posted from the book (That I also purchased but sits untouched on my bookshelf because when I read it myself I might as well be reading banana, banana, banana so I just wait for him to put it in laymans terms.) because I have some questions to pose about sterility and other points.

It's weird my Mom has RA and she is on Remicade/methotrexate and when I get the nervous nillies she doesn't get it. She has been on the combo for 2 years and does really well. She doesn't like taking the meds but she is so much better at disconnecting the med from the side effects...ugghhh wish I had that!


----------



## my little penguin (Oct 4, 2012)

We did Mtx and had blood work every two weeks -it was supposed to go to once a month after the first set but we changed dosage and had to start all over again.

At the very least you should be able to talk to the Gi directly on the phone before changing meds.
I have pushed my way into the Gi office by calling and stating I had to speak Gi before going forward .
Good luck .
We have gotten blood draws after a week when things seemed wonky just to check.


----------



## Twiggy930 (Oct 4, 2012)

Hey Clash,

My son learned how to insert the tube in under an hour.  He did it himself the very first time with the GI nurses just telling him what to do!  It was amazing!  As soon as he came home he did it just for "fun" to show his sister and grandmother his new found "trick".  In less than a week it took him only 12 seconds to insert the tube and he needed no help from us at all.  The only time he ever gagged was when he made the tube go up his nose and out his mouth, which he did just to gross me out.  :ybatty:


----------



## Tesscorm (Oct 4, 2012)

^^ OMG :rof: ^^


----------



## Twiggy930 (Oct 4, 2012)

He told me he was "flossing" his nose!!!
:rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof:


----------



## crohnsinct (Oct 4, 2012)

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.


----------



## Tesscorm (Oct 4, 2012)

Twiggy930 said:


> He told me he was "flossing" his nose!!!
> :rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof::rof:


Double *OMG*!!!  You've got me laughing out loud!!! :ybiggrin:


----------



## crohnsinct (Oct 4, 2012)

Boys!!!!  Eeewww!


----------



## Clash (Oct 4, 2012)

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:


----------



## jmckinley (Oct 5, 2012)

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!


----------



## DustyKat (Oct 5, 2012)

Not quite a volcano but...

	
	
		
		
	


	





Dusty. :lol:


----------



## Tesscorm (Oct 5, 2012)

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:


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!   The volcano simmered a bit, I think, but cooled off!


----------



## Jmrogers4 (Oct 5, 2012)

Clash said:


> ...hmmm I may have to decorate the hat before use to commemorate the occasion!


Why am I picturing that thing covered in sparkles.  I can just imagine the 16 year old "No way am I using that thing!" :rof:


----------



## Farmwife (Oct 5, 2012)

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:


----------



## Sascot (Oct 6, 2012)

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 .  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!


----------



## my little penguin (Oct 6, 2012)

You can also use a cut out empty clean water jug( milk container size) for urine - don't ask me how I know.


----------



## Farmwife (Oct 6, 2012)

: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. Husband's hate those kind of surprises.:lol2:


----------



## Clash (Oct 14, 2012)

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:


----------



## Tesscorm (Oct 14, 2012)

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:


----------



## Clash (Oct 14, 2012)

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?


----------



## Sascot (Oct 15, 2012)

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!


----------



## DustyKat (Oct 15, 2012)

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


----------



## Tesscorm (Oct 15, 2012)

How did the apptmt go today?  And how is C feeling?


----------



## Clash (Oct 15, 2012)

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!


----------



## Tesscorm (Oct 15, 2012)

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:


----------



## Clash (Oct 15, 2012)

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!


----------



## Sascot (Oct 16, 2012)

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.


----------



## DustyKat (Oct 16, 2012)

How are things going Clash?? 

Thinking of you, :heart:
Dusty. xxx


----------



## jmckinley (Oct 16, 2012)

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!


----------



## Clash (Oct 16, 2012)

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!


----------



## Tesscorm (Oct 16, 2012)

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:


----------



## Clash (Oct 16, 2012)

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.


----------



## Tesscorm (Oct 16, 2012)

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?


----------



## Clash (Oct 16, 2012)

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.


----------



## crohnsinct (Oct 16, 2012)

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.


----------



## imaboveitall (Oct 17, 2012)

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


----------



## Clash (Oct 17, 2012)

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!


----------



## imaboveitall (Oct 17, 2012)

Oh AWESOME.
That sounds infectious then for sure. :wink:
Glad to hear this!


----------



## Tesscorm (Oct 17, 2012)

Great news!!  Hopefully all will pass within the next few days! :banana:


----------



## Clash (Oct 17, 2012)

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.


----------



## my little penguin (Oct 17, 2012)

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 .


----------



## Clash (Oct 17, 2012)

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.


----------



## crohnsinct (Oct 17, 2012)

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!


----------



## Clash (Oct 17, 2012)

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.


----------



## jmckinley (Oct 17, 2012)

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.


----------



## Twiggy930 (Oct 17, 2012)

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:


----------



## Clash (Oct 17, 2012)

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.


----------



## imaboveitall (Oct 17, 2012)

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.


----------



## Clash (Oct 17, 2012)

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?!?!?


----------



## imaboveitall (Oct 17, 2012)

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.


----------



## my little penguin (Oct 17, 2012)

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.


----------



## Clash (Oct 17, 2012)

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?


----------



## Tesscorm (Oct 17, 2012)

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:


----------



## Clash (Oct 17, 2012)

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!


----------



## my little penguin (Oct 17, 2012)

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.


----------



## Clash (Oct 17, 2012)

Thanks MLP!


----------



## Clash (Oct 17, 2012)

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!


----------



## crohnsinct (Oct 17, 2012)

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?


----------



## crohnsinct (Oct 17, 2012)

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.


----------



## Clash (Oct 17, 2012)

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:


----------



## my little penguin (Oct 17, 2012)

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


----------



## Clash (Oct 17, 2012)

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!!!


----------



## imaboveitall (Oct 18, 2012)

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?


----------



## my little penguin (Oct 18, 2012)

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 .


----------



## imaboveitall (Oct 18, 2012)

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 bastards.
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.


----------



## Clash (Oct 18, 2012)

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


----------



## Farmwife (Oct 18, 2012)

Well I'm happy you got some answers as far as strangling him,....
that will never end. Ask my mom. :rof:



:hug:


----------



## Clash (Oct 18, 2012)

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.


----------



## imaboveitall (Oct 18, 2012)

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:


----------



## my little penguin (Oct 18, 2012)

http://podcasts.mcgill.ca/health-2/sylviane-forget-crohns-disease-in-canada-environment-or-genetics/

Dr. Forget covers what you are talking about above.
 A good podcast on CD.
:hug: sorry for the whirlwind.
Please note if he get nauseous or flu like usually the shots have less side effect.
They are not that bad to give and you can really change the dose as much as needed.


----------



## jmckinley (Oct 18, 2012)

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.


----------



## Clash (Oct 18, 2012)

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.


----------



## imaboveitall (Oct 18, 2012)

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:


----------



## Tesscorm (Oct 18, 2012)

Clash, I'm so glad you got some answers!!!  And that C is feeling good!!! :banana:  And, YAY to the baby!   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???


----------



## Twiggy930 (Oct 19, 2012)

Yep just seconds to insert that tube.  It's CRAZY!  Yay for random baby encounters! 

Good luck with the methotrexate.


----------



## Clash (Oct 19, 2012)

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.


----------



## Tesscorm (Oct 19, 2012)

For the most part, I have read that they are to be given at different times???  But, here's a post that discusses it...

http://www.crohnsforum.com/showthread.php?t=37507


----------



## my little penguin (Oct 19, 2012)

We were told it didn't matter but to be on the safe side DS took folic acid daily except for shot day.


----------



## crohnsinct (Oct 19, 2012)

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!


----------



## Clash (Oct 19, 2012)

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.


----------



## crohnsinct (Oct 19, 2012)

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?


----------



## Clash (Oct 19, 2012)

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!!


----------



## Tesscorm (Oct 19, 2012)

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:


----------



## Farmwife (Oct 19, 2012)

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!!




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:


----------



## Sascot (Oct 19, 2012)

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!


----------



## my little penguin (Oct 19, 2012)

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


----------



## Clash (Oct 21, 2012)

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?


----------



## jmckinley (Oct 22, 2012)

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.


----------



## DustyKat (Oct 22, 2012)

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


----------



## crohnsinct (Oct 22, 2012)

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.......


----------



## my little penguin (Oct 22, 2012)

I would call - we were told they want to know about any black stool ASAP .


----------



## Tesscorm (Oct 22, 2012)

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:


----------



## Clash (Oct 22, 2012)

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:


----------



## jmckinley (Oct 22, 2012)

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!


----------



## Farmwife (Oct 22, 2012)

jmckinley said:


> On the bright side, got mad at him yesterday and got lots of yard work done!




My parents have 6 kids and for years the yard was SPOTLESS. :rof:


----------



## Clash (Oct 22, 2012)

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.


----------



## crohnsinct (Oct 23, 2012)

Hmm...three girls and no teenager angst...maybe that is why my house and yard are a mess.....


----------



## Tesscorm (Oct 23, 2012)

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!


----------



## Clash (Oct 23, 2012)

Ahhaha, good one tesscorm!


----------



## Farmwife (Oct 23, 2012)

Brilliant!:thumleft:


----------



## DustyKat (Oct 24, 2012)

Oh well done Tess! :ybiggrin: 

Mum 1 - Kid 0...but whose counting. :lol: 

Dusty.


----------



## my little penguin (Oct 24, 2012)

Love it


----------



## Clash (Oct 28, 2012)

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!


----------



## my little penguin (Oct 28, 2012)

fingers crossed sending "Sticky vibes" your way

Good luck.


----------



## Tesscorm (Oct 28, 2012)

Glad the weekend went well and you're not seeing any side effects!!  Woohoo!!! :banana:

Hoping all goes well on Tuesday!!! :hug:


----------



## DustyKat (Oct 29, 2012)

Thanks so much for the fab update Clash! Fingers, toes and everything else crossed it keeps going that way!...:goodluck: 

Dusty. xxx


----------



## Clash (Nov 1, 2012)

Update:

C had his infusion 2 days ago. It seemed to all go well. I was concerned about his weight. On 10/18 he was 115.8 lbs and 10/30 he had dropped to 113.4(actually more as this time he was wearing jeans and every time before I've made him wear basketball shorts). He has lost weight consistently since august. He was on pred from Feb. until finishing the taper the first of June and gained a significant amount of weight. So I'm going to speak with the GI about it at our next appt, which is December 10th. If there is reason before then I will bring it up with the GI nurse.

C told the Remicade nurse he is feeling good. It is true he does seem to feel pretty good but some things still seem a little off. Maybe it is just me and that "waiting for the other shoe to drop" syndrome.


----------



## Tesscorm (Nov 1, 2012)

Glad things seem to be going relatively well!   Pay no mind to that 'other shoe' - it's firmly entrenched and ISN'T going to drop! 

It's too bad he won't go along with supplemental EN - it really would help him gain some weight.. but, he's a teenage boy - there's only so much a mother can do! :facepalm:

:ghug:


----------



## DustyKat (Nov 1, 2012)

Thanks for the update Clash.  

It certainly is good to hear that he is feeling well and the infusions are going fab. YAY! 

BUT...

I hear you on the other shoe! I have one that constantly dangles over my head. I feel guilty that I can't shake the 'what ifs' but it is what it is and so spend most of my time like a tightly wound spring, ready to jump into action at the first sign of trouble!...Yo Rinny! (I hope someone gets the reference! :lol 

Thinking of you guys. :heart:

Dusty. xxx


----------



## Tesscorm (Nov 1, 2012)

Oh my, MUCH earlier than my time!  :lol:


----------



## Clash (Nov 1, 2012)

Hahaha...Pals through thick and thin! Before my time but I've seen all the reruns!

But you are right it is hard not to do the "what if" game. I feel like I am getting pretty good at it though....I can do "what if" into the wee hours of the morning...blech!


----------



## Tesscorm (Nov 1, 2012)

:lol:  I wonder if the 'what ifs' are rosier when seen through Crohnsincts merlot coloured glasses!?!?  :biggrin:    _(I'll let you know how it works out for me tonight! :lol_


----------



## DustyKat (Nov 1, 2012)

Bugger off Tess and leave this old woman alone! :lol: But I will have a glass of vino thank you.  

Oh yeah Clash...aren't those wee numbers lovely? Yes! when they followed by a PM. :lol:


----------



## Clash (Nov 1, 2012)

Tesscorm, yes let me know how that works out...with my luck it wil just make the "what ifs" come from further out in left field, before you know it I'll fit right in with a House M.D. episode!


Dusty- Yep what a difference pm and am make!!


----------



## Tesscorm (Nov 1, 2012)

DustyKat said:


> Bugger off Tess and leave this old woman alone! :lol: But I will have a glass of vino thank you.  QUOTE]
> 
> :lol:  Aww, poor Dusty...  You just plop yourself down in your rocking chair, pick up those knitting needles and careful you don't start rocking too hard after your vino!!  :hallo3:


----------



## DustyKat (Nov 1, 2012)

Bloody hell! Are you channelling Dexky! You remember, my long lost good for nothing 'partner'! :voodoo:


----------



## Tesscorm (Nov 1, 2012)

You know...  The thoughts did have a southern twang!  Whatever did dexky get off to?  I've often wondered abt him.  (What did u do to him?!? )


----------



## Farmwife (Nov 1, 2012)

Tesscorm said:


> [
> 
> :lol:  Aww, poor Dusty...  You just plop yourself down in your rocking chair, pick up those knitting needles and careful you don't start rocking too hard after your vino!!  :hallo3:



Dusty and Tesscorm,

You guys aren't old!

I know all about rocking chairs, I've seen them in museums!:thumleft:

We younger folks have recliners that rock. You should try them!


----------



## Tesscorm (Nov 1, 2012)

You mean the 'gliders'?  :lol:  They're for the old folks who can't manage the 'rocking' - they're easier to get in and out of!  :yfaint:


----------



## DustyKat (Nov 2, 2012)

Ha, see we old folk are still sharp of mind! :lol: Now where did I put the car keys??? 

What did I do to Dexky??? I put the hard word on him...:wink: and he...utahere:


----------



## Clash (Dec 4, 2012)

So yesterday we did a labwork up. I meant to post the labs the GI had ordered but it slipped my mind. Just going from memory, CRP, ESR, CBC comp. with platelet diff. those I absolutely remember then something along the lines of comp. metabollic panel(?) I may have worded that incorrectly.

Anyway, the lab tech said we should have the results today and I am so impatient!!! This will be the first 6 week stint that incl MTX with Remicade. C has been doing really great with no usual symptoms of a flare popping up late in the time between infusions(his next infusion is next Monday)

What I have noticed:
-Still dealing with joint pain in the back(says he feels like an accordian smushed together and his back needs to pop but won't)

-Every so often the inside corner of his eye gets really red. I've noticed off and on for about a month. At first I figured allergies but then saw the EIM poster Crabby posted on a thread and it looks like the pic relating to Eye EIMS. C says it doesn't hurt or itch. It only lasts a day then it is gone so not sure if it is CD related.

I'm going to discuss both of these issues with Ped. GI and get a referral to eye and rhuemy. I don't need a referral to get these appts. but I would perfer to use someone that deals with CD patients and I am assuming the Ped GI might have certain ones he refers patients too.

I have brought up the rhuemy before but always get sidetracked before the end of the appt. and never get back around to referral. Ughhh...why am I so scatter-brained!

Anyway, trying to be patient on getting these results but it is not my strong suit. The CRP and ESR has never really been indicative of C's disease activity but we can usually determine if things are going down hill if he is trending downward toward anemia.

Trying really hard to will the office to call with the results quickly!!!


----------



## jmckinley (Dec 4, 2012)

Hey Clash! I hope those results are awesome. Ryan has done super well with methotrexate. It seems to be our saving grace right now. 

On the eye thing...does it show up the day or so after the injection?

Make a list of questions! I get scatterbrained too. Make a copy of the list and hand it to the Dr. That way, maybe he will bring next question up if you get sidetracked! You can write answers on your copy!


----------



## crohnsinct (Dec 4, 2012)

Oh Clash!  You need to take a lesson in patience from me:ylol2:

I am willing those results right a long side you.


----------



## Jmrogers4 (Dec 4, 2012)

Hope you get results soon


----------



## Tesscorm (Dec 4, 2012)

Sending lots and lots of wishes that all comes back with good results and that you get them NOW!  

Stephen describes his back pain/discomfort exactly the same!  ... that his back needs to pop!  OMG, he's even done it!  Sounds AWFUL!  I keep telling him it can't possibly be good but some doctor, forget which one, said if he doesn't do it too often, it's okay (I still don't believe that! )  In any case, Stephen swears yoga and stretching help!  He went to yoga for a little while 'regularly' but now just goes, maybe once a month, and stretches at home in between.  But, he does go to yoga on his own accord whenever his back or shoulder hurt him so it must help!




jmckinley said:


> Make a copy of the list and *hand it to the Dr.*


  Great idea!!!


----------



## Clash (Dec 4, 2012)

Jmckinley- Chase doesn't take MTX injections but instead 10 pills every Friday. That is an awesome idea, to make the copy for the GI.

CIC- :rof: on you and patience and :hug: on helping me will the results!

Jmrogers- hope our latest results are as good as Jacks when we go on Monday!! How is the rehearsals for the play coming along?

Tesscorm- Chase pops his back at times too(more than I care to hear because it sounds blech!!) but it pops several times like pop pop pop pop, ewww. Interestingly enough, he has asked about yoga recently as he did some game program on Wii that the yoga stretching really helped. So we will now look into that!


----------



## Tesscorm (Dec 4, 2012)

:lol:  I know, doesn't it sound horrible?!?!?  OMG, and my daughter does it too!!!  

Just FYI, Stephen does hot yoga.  I'm sure any type would help though, we just happen to have a hot yoga facility around the corner... :worthy:  (yoga smiley)


----------



## Farmwife (Dec 4, 2012)

HOT YOGA Tesscorm????????:eek2::eek2::eek2:

What in Sam Hill are y'all doin over yonder.

What is that? Ya do it in a bath tup?:rof:

No wonder the world skewed up!


----------



## Farmwife (Dec 4, 2012)

Clash I hope you boy gets back some good results.

When I was a teenager I would lie in bed and stretch my back and I to would here the pop pop pop. I started exercising and stretching and it did help.


----------



## Tesscorm (Dec 4, 2012)

HOT  - we all wear skimpy, sexy outfits!  :lol:  It's no wonder teenage boys are flocking to yoga!  :lol:

Seriously, it's yoga done in a very, very hot room!  I suppose the heat helps relax the muscles and allows you to stretch further???  I love heat but, these classes are 75-90 minutes and I was dying in there!  Stephen literally comes out of there completely drenched!


----------



## crohnsinct (Dec 4, 2012)

Hate to burst your bubbles girls but perhaps the Yoga requests have less to do with your boys health than sitting in a class full of scantily clad women in compromising positions!


----------



## Farmwife (Dec 4, 2012)

Tesscorm said:


> HOT  - we all wear skimpy, sexy outfits!  :lol:  It's no wonder teenage boys are flocking to yoga!  :lol:
> 
> Seriously, it's yoga done in a very, very hot room!  I suppose the heat helps relax the muscles and allows you to stretch further???  I love heat but, these classes are 75-90 minutes and I was dying in there!  Stephen literally comes out of there completely drenched!



Well I'll be..... I'm telling my husband while he's working in the hot barn he's really doing hot yoga! But I AM NOT wearing a skimpy outfit, no matter how he begs.:rof:


Thanks:hug:


----------



## crohnsinct (Dec 4, 2012)

Well FW you should probably put something on:ylol2:


----------



## Farmwife (Dec 4, 2012)

:tongue:


----------



## Crohn's Mom (Dec 4, 2012)

Gab has that same back pain ~ and pops her back too ! 
Ive been cracking my back for years so I really can't say anything about it negatively LOL.

The Ped GI told me today that if Gab's docs decided to add MTX to her Cimzia that it is awesome for joint pain.  Has it helped with that ? 
I'm going to start researching about it because she agrees with me that its pointless
 to add 6mp or Imuran since 6mp has already failed her terribly in the past.  I will research the Imuran too ~ she did say they are basically the same but that Imuran breaks down in the body to "make it's own medicine"? At least I think that's how she put it ? Anyhow, I'm going to read about that a little but really study up on the MTX.

Good luck on the results ! Hope you hear really soon !! 
I have no patience left to send you ~ even virtually ~ or I would LOL.

xoxox


----------



## Clash (Dec 4, 2012)

Crohn's Mom, I would say it has worsened since MTX but I think it just comes and goes. C, being confident in the fact that he knows everything:ycool:, insists it is not CD related and will go out of his way to associate it with something else. But he also refuses to subscribe to the idea of EIM's altogether(I think it is a combo of denial that CD could affect even more and the fact that I am the one telling him there are EIM's associated with CD:ybatty

I have to say that C has not experienced bowel symptoms or flare issues(night fevers, ulcers, joint pain in the knees, fatigue) since starting the MTX. I was really worried about the side effects, nausea, flu like symptoms, fatigue etc. that many have mentioned with the MTX pills but he hasn't experienced anything. He is taking 10 pills(25mg) every Friday(GI said to take on Fridays so he would have the weekend to get over side effects) and it doesn't slow him down one bit(touch wood or kill a crow or cow or what ever it is CIC does to appease the CD Devils:tongue

Still no word I just left a message with the med. asst for the GP. The GI gave me the order to present to GP so we wouldn't have to drive to ATL for lab work.

Oh and my freakin' tree lights have a bulb out and it is one of those trees with the lights already attached and I can't for the life of me get to the bottom of it!:ybatty::ybatty::ybatty:


----------



## Sascot (Dec 4, 2012)

Hope you hear soon!  I am having to attempt patience myself these days but it's not really working - just feel myself getting more demented! :eek2:
Hot yoga???  Now there's an interesting concept - was hoping the yoga teacher was just really hot :rof:


----------



## my little penguin (Dec 4, 2012)

Hugs hope the results are in first thing in the am for you.


----------



## Clash (Dec 6, 2012)

Okay, so I just went a picked up the labwork. The GP didn't order the labwork, his lab only carried it out and faxed it to GI today. We have an appointment with GI on Monday, at which time we should go over labwork. Since the GP didn't order the lab work he didn't have any notes on it and the med. asst couldn't tell me what it all meant. I put a message in to the GI nurse ostensibly to ensure she received but then was going to ask about the results. It was late in the day though and they are closed on Friday, so not sure if I will get a response since our appointment is Monday.

Okay, so he got a CMP, CBC with platet diff, CRP and it stated for him to get ESR but all I see is SED, I guess they are the same.

He had some low flags and high flags:

CMP panel



Chloride      98                L       100-111 MMOL/L
Glucose      134              H        70-99 mg/dL
ALK Phosphatase    174    H       50/136 UL
AST/SGOT   13               L       14-40 U/L
CRP            .40              H        0.0-3.2 mg/dL


Under his CBC panel 

RDW         16.4   H  12.2-16.1%

also in normal ranges:
WBC         6.6       4.3-10.3 K/UL
RBC          5.02     4.31-5.71 M/UL
HGB          14.6     13.5-17.1 GM/DL
ALT/SGPT  21        12-78 U/L

oh and SED was 5     0-15 MM/HR but SED has always been normal

Edit: also wanted to add CRP was elevated but only slightly so it was .40 normal range 0.0-.32 mg/dL


----------



## Clash (Dec 6, 2012)

So I was a little worried over the H and L flags on the labwork. The GI nurse just called and said they had the lab work and the GI would go over it in detail on Monday at the appointment but she wanted me to know he was pleased over all. I don't have the previous bloodtest for right after we started the MTX but I guess in relation to it and the others C has had in the last several months these are results to be pleased over, maybe? 

Sorry but when I see the H and L flags I get a little freaky but she assured me he would go over them in detail on Monday and since C is feeling better than he has felt in months to the point of driving me a little batty then I get to climb in my bubble and drink some wine!!!


----------



## kimmidwife (Dec 6, 2012)

His labs look pretty good overall. His glucose is a little high did they make him do the labs fasting or after eating? You can sometimes get a random high on that. I wouldn't be overly concerned but do have it repeated when he is fasting. The rest all look pretty good. Did he have a fecal calprotectin?


----------



## Clash (Dec 6, 2012)

Thanks for the info Kimmidwife! It's funny they didn't ask for him to fast but I debated it with him that morning but he won out and had a chicken biscuit and soda.:eek2: I did look back through the labs I do have for him and I only see one other time out of five that it was high and that was 144 the rest of the time it was between 79-85.

He had a FC test two months ago, the level was 1200, it was the deciding factor of moving up the doses and eventually adding the MTX. He didn't have one this go round but I think he may have one the next six weeks, I'm going to ask on Monday.


----------



## Catherine (Dec 6, 2012)

Either fast next time for glucose or at least skip the soda.


----------



## Clash (Dec 6, 2012)

Yeah, I think we'll skip the breakfast on the way to the lab and see if that changes things.:ybatty::ybatty:


----------



## kimmidwife (Dec 6, 2012)

Yes it is important especially as I was told kids with crohns are at a higher risk for diabetes. When he had the 144 was he fasting or was it also after eating? Also how long a time was there between eating and when the lab work was done if you remember?


----------



## Clash (Dec 6, 2012)

This time he ate on the way to the doctor's lab. The one with the level of 144 was taken in the first of May at 2:40pm and he has never fasted so he had at least eaten breakfast, lunch and then possibly even a snack on the way to the appt. Could the fact that he ate on the way this time and all day the last have an effect?


----------



## Clash (Dec 6, 2012)

Also, this time he ate on the way to the doc(finished in the p-lot), and then we waited to be called for about 20 to 25 mins. I posted the other eating schedule in the above post. Thanks Kimmidwife!


----------



## kimmidwife (Dec 6, 2012)

That is a short amount of time between eating and the test, that is good it probably is just elevated from his food intake then. I would have been more concerned if it was over 1-2 hours between eating and blood drawing. It still cant hurt to repeat a fasting test but it will probably come back normal.


----------



## Clash (Dec 6, 2012)

I'm going to make sure we fast next time so should I just go to the lab first thing in the morning before he eats? Or how long after a meal? Thinking about it now, the May test he would've been in school and I definitely would've bought him a snack and probably a drink(most likely powerade) when I picked him up and he would've eaten it on the way to the doc. I'm going to look at the other test dates and times and see what the most likely scenario with them was.


----------



## kimmidwife (Dec 6, 2012)

I would do first thing in the morning before he eats. You will get the most accurate reading then.


----------



## Clash (Dec 6, 2012)

Thanks, Kimmidwife. Looking up some of the other values, a couple being off(high with some low with the others) it says that can be related with B12 or folic acid deficiency and another one due to vitamin D deficiency. Of course, there are other possible reasons but he started vitamin D a little while back because it was low normal and started folic acid when he started MTX. I'm thinking about asking to have those tested as well as B12 next go round.


----------



## kimmidwife (Dec 6, 2012)

It cant hurt to have them rechecked. How long as he been on the supplements? You want him on it for at least 3 months before having it rechecked.


----------



## Clash (Dec 6, 2012)

It has been almost 3 months for vitamin D, and 2 months for folic acid I would say. So by the time the next infusion after this one rolls around I'll ask for them to be pulled.(6 weeks from now and we will fast then for the gluclose too!) I love this forum and all the info and support everyone gives, thanks so much!


----------



## kimmidwife (Dec 6, 2012)

No problem! This is the first chance in a while I have had to sit and be on the computer with no interruptions. With five kids it is hard to get some quiet time sometimes!


----------



## DustyKat (Dec 7, 2012)

Clash said:


> He had some low flags and high flags:
> 
> CMP panel
> 
> ...


I agree about the highs and lows and glucose.  

SED is the same ESR. 

ALK Phosphatase    174    H...Likely you do not need to worry about this one. A high reading at C's age is a bonus, it is an indication that he is growing and/or going through puberty.  

Good luck for Monday! 

Dusty. xxx


----------



## Clash (Dec 7, 2012)

Thanks, Dusty just looking back through his other labwork I do have, which isn't all or even the most recent, the ALK was 111(normal 50-350 U/L) at time of dx(Feb), 89(normal 50-350 U/L) right before starting Remicade(May) and 154(normal 50-350 U/L) right before 4 dose of Remicade(Jul).

I did have another question though, with the previous result levels in the ALK phosphatase it listed the normal range from 50 to 350 U/L why such the descrepency between that normal range and the one listed on his labwork this time, 50-136 U/L?


----------



## DustyKat (Dec 7, 2012)

Hey Clash,

Have you changed labs? 

Perhaps the range they quoting are now is the normal adult range. 

I have seen labs quote paediatric ranges in the higher ranges you had quoted previously. The ranges changed every three years, so 7-9, 13-15, that sort of thing with a cut off at 16 y/o. I imagine they do this to take growth spurts and puberty into consideration and therefore an abnormal result is not recorded. 

Dusty.


----------



## Clash (Dec 7, 2012)

No haven't changed labs but the child/adult thing makes since since he is 16, thanks!


----------



## izzi'smom (Dec 10, 2012)

Just dropping in to wish you luck at your appointment today!!


----------



## Clash (Dec 10, 2012)

Update: Just met with C's Ped. GI and went over the lab work. Doc was thrilled with his numbers and progress since adding MTX, he is considering moving C out to 7 weeks on Remi. C has had no symptoms since the add of MTX but the doc is a little concerned about his inability to hold his weight so he has ordered more blood work and we will go from there with everything. Since everyone in our fam is kinda scrawny he doesn't expect him to be a bruiser but just on the safe side he is checking some things out. 

C is getting his remicade now.


----------



## Jmrogers4 (Dec 10, 2012)

Yay!  Hope blood work is normal as well.


----------



## Tesscorm (Dec 10, 2012)

Nice update!! :thumright:  :thumright:  Glad to hear re the symptoms, metho and remicade!!


----------



## Catherine (Dec 10, 2012)

Glad to hear he doing well.


----------



## crohnsinct (Dec 10, 2012)

That is fandamtastic!!!!!!  Ugh!  Moving out makes me nervous but he's the doc.  Also, I think I have told you this before but weight gain was one of the last things that came around for O.  It was a good amount on prednisone then very slow after that then after EEN it started coming back on.  I am guessing cuz that is when she really turned the corner.  Hoping that is what's up with C too!


----------



## Sascot (Dec 10, 2012)

That's good news, glad to hear it!!


----------



## izzi'smom (Dec 10, 2012)

I :heart: this type of update...may it continue trending upwards for you!!


----------



## my little penguin (Dec 10, 2012)

:dance::dance::dance:

Love it.
the moving out part would have me on edge as well.....
Glad the numbers are good.
As far as weight.
One the papers research set ion- states ibd kids do not have a higher resting energy state but do need more calories than they can consume so they recommend supplementing - there was a chart
by age - I think C would fit in the 3 cans a day at this point. let me look.


> Table 4
> Suggested Amounts of Supplemental Nutrition by Age and Weight
> Additional caloric needs
> Age (yr) Weight (kg) (1) (1.05–140% above RDI) Amount Formula/day (2)
> ...


from:
http://www.practicalgastro.com/pdf/January06/FaubionArticle.pdf


----------



## kimmidwife (Dec 10, 2012)

So glad to hear the good news!!!!


----------



## awmom (Dec 10, 2012)

That is great news.  It must be a big relief knowing you are on the right track!


----------



## Clash (Dec 10, 2012)

Thanks for the responses guys!! So due to traffic during rush hour it took us an hour to go 15 miles on the interstate coming home!!! Ughhh such a long trip!!

MLP, thanks for the post,  the GI suggested C start supplementing. I told him about our previous efforts and he said he could start with Carnation Instant Breakfast but try to get on Boost or Ensure, since his inflammation seems to have calmed, if inflammed  he'd suggest one of the more easily digestable. He said it was okay to start with one a day but he would like him to have worked up to 3 a day in the next week and to continue until next appt.

He also changed his mind about the 7 weeks for now. He came over and spoke with Chase and the infusion nurse and she told us about it when we were scheduling the next infusion. He said he is going to go six weeks again this time and possibly next time depending on everything.

With the lab work he wanted, I think it was a couple of thyroid tests(?) just to be safe not sure exactly what else, I asked could we also check vitamin levels and he said that sounded like a plan so he was checking D, B12, Folate, Zinc and Magnesium. Results in one to two days on all labwork.


----------



## crohnsinct (Dec 10, 2012)

Haha 6 weeks?  Glad he saw it our way! 

Carnation Instant Breakfast...oh to be a teen boy who needs to gain weight!


----------



## DustyKat (Dec 11, 2012)

Thanks for the fab update Clash!  I am so happy for you both that all is going so wonderfully well! 

Onwards and Upwards!
Dusty. xxx


----------

