GI appt and another med change

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Clash

Clash

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Apr 26, 2012
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C had his GI appt yesterday along with remicade infusion. His GI is a couple hours away so we go up the night before when he is seeing GI and having remicade.

It was quite the adventure. We stopped half way there and ate and got to the hotel about 8:30 Wednesday night. My Mom went with C and I. We were all asleep by 10pm. At 10:30, I was jolted awake by projectile vomiting, I vomited twelve times and was doubled over in pain. If I tried to stand up straight or walk I immediately vomited again. This went on until a little after midnight and my Mom decided to call the ambulance. So off to the ER I was headed. The gave me Zofran, and dilaudid for the pain(although I protested because pain medicine gives me this gall bladder attack like pain right in the bread basket, even though I don't have a gall bladder.) My WBC was 14000 but no fever. My blood pressure was low on arrival but normal once they got meds in me. The doc wanted to do a CT scan. I have had 2 in the last four years to no avail with some GI issues I've had so I wasn't up for another one. About an hour after I arrived I started having D it was just brown/yellow cloudy water for the most part(sorry 'bout that). But things had eased off I didn't vomit again and we were back at the hotel, showered and going back to sleep at 4am only to get up at 6:45 to get ready and be at the appt. at 8am. Gotta love a GI adventure where your kid isn't the star of the show! Ughh.

The fun only continued at the C's appt. For the last 4 or 5 days C had been complaining that his throat was "scratchy" when he ate and he felt like he was swallowing past something. I've really felt like it was allergy issues since we have been struggling with them all season. "Feels like I am swallowing past something" was C's first symptom before dx, but I asked when it started did it feel like CD and he said he didn't know. There haven't been any other symptoms though.

When the GI asks if there is anything beyond the "scratchy feeling"(because that would be an odd CD symptom) C states that "yeah, I kinda feel my food going all the way down and the other day after I ate I threw a little bit back up, but I don't know if it was CD or I just ate too much." Ummm...well nice to know kiddo...could've let me in on that one a little sooner!

So GI added 7.5mg of MTX back in, hoping for a synergistic effect and feeling that he should've just dropped C to 7.5mg in the first place. Can we get off this carousel now, please. Infusion went fine and I do have to admit C felt good about the fact that GI was adding MTX back so maybe he was more concerned than he was willing to admit.

Back home, I slept most of the afternoon, evening and night, and I have to get my WBC checked to make sure it isn't still slightly elevated. I'm pretty much dumbfounded by the whole trip like, "what the hell just happened."

Sorry this is so long!!
 
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Good grief Clash! You poor thing...:ghug:...I surely hope you are on the better things and it stays that way :heart: and little wonder you are feeling bewildered when you throw the appointment into the mix. :yfaint:

I hope the reintroduction of Metho takes care of the middling things that C is dealing with and that they are indeed middling!

Sending mega loads of luck and well wishes to you both. :hug:

Dusty. xxx
 
Oh my goodness! Sounds just horrible :hug:

Hope you get back to normal soon and hope C's new meds does the trick.

(It's funny how kids just throw things into the mix without warning!!!)


(((HUGS))) to you both xxx
 
Niks, I know you are right! C cracks me up in with the GI it's like he gets word vomit. He will list every single twinge or pop he has experienced since the last time he saw the GI and even try to correlate them to past symptoms. Some of leave me trying my best not to giggle!
 
Oh my!!! Poor you! I hope you're feeling MUCH better by now! :hug: I'm sure you've considered it but any chance it was something you ate? (But would that even affect your WBC???) Whatever it was, I hope you're completely over it!

And, yes, love it when Stephen just 'mentions' something at the GIs office! But, I remember, when Stephen was feeling 'off' once, he said 'mom, I have crohns. I'm going to feel 'off' sometimes.' I guess they adapt and learn what's just a 'normal' everyday symptom... but, you made me smile with him listing his symptoms. :)

Hope the MTX takes care of all!!

:hug:
 
Tesscorm, I think maybe food poisoning but I don't know if that can cause elevated WBC. The doc said vomiting can cause elevated WBC which is one of the reasons I wouldn't agree to the CT scan. Also he said it was only slightly elevated? They want me to follow up with my GI but I think I'm just going to get my GP to run labs again to see if the WBC has gone down.
 
Hope you are feeling better Clash!
Yes, Jack just says things to the doctor like that, which leaves me going WHAT?!!
Hope the MTX does the trick and brings everything back under control
 
You poor thing - hope it was just food poisoning and you are all better now! Hope the methotrexate helps - that's funny he talks so much at GI appointments. My poor boy just sits there and nods while I ramble on! Doc asks him how he is and gets the usual "fine"
 
It started out that way with us Sascot, he would complain to me but then get him in front of any doctor and he would reply "fine" every time.

I really do feel it was food poisoning because it just came on so quick. I've tried to avoid C's personal space though in case it was some type of virus.

Just last week we went for an eye check up, he's been having headaches and I think they are allergy related but we are making the rounds of docs to ensure all is okay. So the ophthalmologist sees nothing indicative of episcleritis or any other EIMs but he did se a scratch on the cornea so he px'ed an antibiotic eye drop. C immediately says to the doc, "Now because I have CD sometimes antibiotics can cause me problems, do you know if this one will?" Ha! The kid does listen when I drone on about all my CD research!! Doc reassured him the antibiotic wasn't systemic.
 
Oh my gosh! You poor thing. So quick and violent I would think food poisoning to. Sure hope you are feeling better.

I remember very clearly that being a symptom with C...with feeling the food and the little bit of vomit part too! I hope the MTX takes care of it all.

Geez! Is there no happy medium? O suddenly becomes mute in the docs office. If she says anything it is just...fine. Really? So that bowl full of blood and the blacking out were all nothing then? UGH! I think they go both ways just to male us look nuts...nuts when we say all is good...nuts when we list off symptoms.
 
Clash - that so funny about the eye drops! What a sweetie he is!! And, yes, they DO listen to us! :applause: :worthy: :wine:

Stephen also refused to take anything when he dislocated his shoulder in Dominican, said he knew he couldn't take painkillers but couldn't remember which, so took nothing... (well, except whatever iv med they used to put him out while they popped his shoulder back in).
 
I normally get an eye roll or grunt when I'm discussing info with C so it urprised me when he piped up with questions!
 
I think I have had food poisoning more than anyone I know - it's miserable and sounds very much like what you are describing. (I've gotten twice from eating a tuna sub from Subway - different stores... you would think once was enough!)

Hope you continue to feel better... Not sure if you Mom always joins you guys on those trips, but wow... what a blessing to have her there!

Hope the mtx does the trick for C!
 
My poor Mom will probably never volunteer to go along again! I felt so bad for her, I couldn't even stand up and she wanted to try to haul me to her car, she has RA and back problems so there was no way I was letting her do that. I told her to call the ambulance then the desk clerk didn't write down our room number when she told him to call the ambulance. So they came waited down stairs then left! She had ti call them again! She is truly my hero and always goes above and beyond!

Thanks for all the well wishes, guys!
 
I hope you're feeling better now and that it wasn't a virus. I'm glad the vomiting stopped. I'm glad your mother was there. Did C sleep through it? Did you leave him in the hotel room? We went over 3 hours a way to our GI appt today too. J had a seizure just before we left so I was pretty wound up on the way and pretty exhausted driving home...
 
He slept through most of it. Mom woke him up to tell him that she had to go with me to the hospital and to make sure he locked the room up behind us. He said he thought to himself, well if this is food poisoning(he and I shared an appetizer) and I end up with it I'll just call a taxi and tell them to take me to CHOA. I told him I hope you would've called your grandmother's cell phone first, his response.. oh ummm I didn't think about that yeah that would've probably been important! Ha! The drive home was awful C was asleep and Mom and I took turns yawning!!

Goodness, that is quite a trip for you guys! The seizure would've had me on pins and needles for sure!!
 
So I guess we are now flaring. I'm not really sure what to think:

Remicade last Thursday
Took MTX on Sunday
3 bms on Tuesday(1-normal, 2-fluffy some mucus) his norm is 1x a day or every other day.
No pain
Ate a biscuit and then gagged part of it back up on Wednesday
No ulcers
No fevers
Some fatigue, maybe(can't really tell since GTA 5 came out this week so he's probably not sleeping when he should)
Tuesday eyes started, really red in the corners(went to ophthalmologist and confirmed episcleritis today)
Appetite still good, weight still good.

GI said to observe for the next week if it gets worse let's start with FC test and go from there. Blech blech blech.

If it weren't for the episcleritis I wouldn't say anything was going on, he really doesn't seem that bad and the changes that have occurred aren't on going like bms are normal for last two days, and he admitted he woofed the biscuit down and more like got stuck not enough drink that he was vomiting it up.

So we wait.
 
I hope he's not flaring! Since he's just added the MTX back in, could the changes you're seeing (ie BMs) maybe just be his body adjusting/reacting to the med? Hoping, hoping that's all it is! :ghug:
 
I hope that might could be it but the episcleritis is the worrisome one, since it is an EIM that occurs concurrent with active flares or disease. If I'm wrong about that someone please correct me, because I would love to be wrong!!
 
BTW, I spoke with a medical supply company today about the formulas and what was their experience with insurance coverage(and our provider) and they stated as long as it wasn't by mouth it has been covered by our insurance provider in the past at 100%. So if this is a downhill slide I will be campaigning for EEN, I suppose.
 
Sending warm wishes and hopes that the MTX will help. Our kids need longer remission periods!!!! On the formulas, our insurance (BCBS) has been covering it even if he takes it by mouth. We paid out of pocket for a year before finding out they would pay. Best, best of luck.
 
awmom, ours is BCBS as well. Our ped GI has never utilized pred with C, only the GI that diagnosed C and the Ped GI started the taper at our first appt. So I really have no idea what the GI is thinking if it is a flare but I plan on bringing up EEN since Tesscorm posted that article about Remi and EEN.

Maybe it won't come to any of this, maybe it is some weird fluke, I guess the next week will tell. Or hopefully the next dose of MTX will get us back on track.
 
Yeah, all I've read indicates that as well. The ophthalmologist also affirmed it as well and seemed well informed of the EIMs of CD related to the eyes which made me feel better about choosing him. It was also a little depressing though as I had hoped it was something unrelated that was going on. At least, C doesn't seem to feel bad, be in pain or having a lot of GI probs right now...maybe that will continue.
 
Oh no Clash, :( I am so sorry to hear this. Sending you mega loads of love, luck and healing thoughts your way hun. :ghug:

Thinking of you! :heart:

Dusty. xxx
 
Wait maybe it isn't episcleritis....maybe it is some other eye ailment...get back in the bubble!
 
Ohh No Clash! Jack's GI said he was seeing a lot more flares right now, wonder if it is a time of the year thing? Hope everything is back under control quickly
 
So I need someone to look at this and see if they can make any more sense of it:

Timeline:
4 weeks ago-complaining of headaches/light sensitivity

2.5 weeks ago appt with ophthalmologist- no issues to cause headaches but abrasion on cornea possibly causing light sensitivity-antibiotic drops

2 weeks ago- GI appt/remicade infusion- C complained a little of fatigue, feeling like he had a lump in his throat, feels like swallowing past something. GI fears start of flare puts C back on MTX but at 7.5mg per week

Sunday before last we take first dose, Monday he seems more fatigued.

Tuesday- fluffy stool and more than one bm, his eye is bloodshot in the corner, I fear episcleritis take him to the eye doc and yep it's episclerities.

He remains fatigued but does seem to improve as the week moves on as far as energy. No loss of appetite, no fevers, ulcers, or trouble with bowels, no pain.

This Sunday- MTX day. He had spend Saturday night with a friend and during a friendly brouhaha he gets clocked in the left eye. There is a cut, no concussion, but a knot.

Monday- severe fatigue, doesn't get out of bed all day, complains of achiness has 4 bowel movements all fluffy and skin tag seems inflamed.

Tuesday- complains of severe headache and fatigue, I literally wake him up to eat something, he sits up eats it and goes right back to sleep. He slept from 11pm the night before to 3:30pm Tuesday when I got him up to shower and go to GP. He says he feels awful but it seems to intensify when he sits up. GP checks him out runs blood work and feels C is dealing with the start of a flare or the headache/flu like feeling/fatigue is a side effect of the MTX he is experiencing. Speak with GI nurse when lab work returns normal and she says doc wants to wait a week then possibly do FC test and maybe HACA. Still no pain, one bm yesterday, with a string of red blood(C says he things it is from skin tag but it looks embedded in bm. Blood in bm was after speaking with GI nurse.

I'm a little frustrated, the GI nurse said the GI wanted to wait and see if C had more D, ummm okay but D isn't his thing. I mentioned maybe it was MTX side effect since it seems to improve as week goes on, she states GI said he can come off MTX, I tell her I don't want to do that unless there is a plan and she says GI said he doesn't have another plan if C is going to come off MTX because we think he is having side effects and that none of his other patients at 7.5mg experience side effects. The GI doesn't think it's a flare because no usual symptoms, joint pain, pain, ulcers, night fevers. The GI may want to test for parasite if C starts getting D, I said I don't think this is C-diff since there is no D, no smell, none of the common stuff, she agrees GI doesn't think it's C-diff.

What the hell? He doesn't think it's a side effect of MTX, or a flare or C-diff. What does he think it is. And shouldn't his response to us thinking side effect of MTX be "well maybe we should move to injection" instead "well they can take him off MTX but I'm not changing his plan right now". I am so very frustrated and it is 11:40 and my kid is still not out of bed.
 
Sorry things are getting so bad. Hope they come up with some sort of plan soon. Doesn't really sound like they are taking it that seriously which is odd. Hope things improve soon.
 
Hmm! Fatigue always a red flag for us combined with everything else that is going on certainly sound like you need a better plan then just stop the MTX.
I think nurses have standard questions they ask. Just talked to Jack's and she was asking about blood in BM's - told her never has been one of Jack's symptoms. Yet they ask every time.
Jack's blood was normal, FC was elevated. I really feel you can't just count on one test result but need to look at symptoms along with tests.
I don't think it matters what his other patients experience is only what is going on with C -kwim. It always frustrates me when doctors say that as we all know on here it is such an individual disease.
Hope you get a plan soon and things improve. Lots of hugs!
 
Thanks, Jmrogers4. It was the first time I was truly aggravated by the GI. I was in agreement with what he was saying about waiting a week for the FC test. First I want to see if the fatigue dissipates as we move out from the MTX dose and I want to see if they return the day after taking the MTX.

If he improves towards the weekend then is back in bad shape after the MTX, I'm going to speak to him about injection. If he remains poor throughout this week then next week I'm going to ask for the FC test and possible EEN.

I honestly think that it is maybe a combo of MTX side effect(which is weird since last time he was taking 25mg with no side effects at all) and the start of a flare, I think the episcleritis points to that. It is just weird that he is having none of his normal symptoms- except fatigue.

I didn't put any stock in the lab work, but his CRP was 2.9 and normal ref range high is 3.2.

Worst of all C isn't putting any stock in the episcleritis and doesn't feel this is a flare because he says it doesn't feel like one(and he is resentful of mention of flare). I just don't know what else to do except give it until next week and see if it improves or gets worse.
 
Was just thinking of you last night and was going to ask how C was doing... :ghug:

I think your plan makes sense, try to rule MTX side effect in or out. As far as 'if it's the beginning of a flare', I've generally gone with how Stephen interprets his symptoms (ie when long distance running or when he's had an 'off' day, he specifically says it's 'crohns' pain/discomfort, other times he hasn't been well, but he'll say 'doesn't feel like crohns'. I certainly don't understand what he's feeling but assume he does. :eek: But, having said that, I have asked here and the GI if Stephen's prior symptoms will always be an accurate gauge of an oncoming flare - unfortunately, it seems the answer is no. :( As time goes on, the initial signs of a flare 'may' change. :ymad: And, I would imagine this could be even more the case with kids as their bodies are still developing and changing?? So, now that I've talked alot and given you nothing useful :lol:, I still think all you said about your plan is what I would do too.

Just in case he does have some active inflammation, can you get him to drink one or two shakes? With inflammation, he may not be absorbing vitamins/minerals and that could be contributing to the fatigue and general unwell feeling.

:ghug: :ghug:
 
Thanks Tesscorm, I'll try to see if I can get some shakes down him. He still seems to be gaining weight so it might be a hard sell, he was up two lbs at docs but it is worth a shot.

Yeah, I usually defer to C about symptoms being CD or not but I guess I'll just have to wait this one out, isn't that always the hardest part. I just shudder at the amount of work he is going to have to catch up on. We have been trying to do along and along but ughhh.

Hope all is well with Stephen and he is liking college.
 
Gosh Clash, I can relate to your worries. It sounds like you have a good plan to observe what happens after the next MTX dosage (if he improves before then) and then go from there, although I know these elimination processes are difficult especially when fearing a flare. I also think there would be no harm in doing the FC, especially if you don't see things improving.

The fatigue and the headaches are worrisome symptoms to me as these were presenting symptoms for N before he was diagnosed, but I know they can also be attributed to other things and symptoms are different for each kid.

I hope beyond all hope that he is not flaring. Are you doing diet stuff in the meantime? Partial EEN and his "safe" foods? That always helped us tremendously! Sending warm thoughts.
 
For Stephen, my biggest selling point on these shakes is the protein... he's convinced he's bulked up over the last two years simply because of the formula. I certainly don't think he's wrong in that the nutrition definitely played a big part but I also think he was just at that age when his body started to change to more man (ugghh, not my baby! :eek:) and less teen/kid. But, whatever the case may be, as long as I buy Stephen the shakes with extra protein, it's a much easier sell. Given C's age, perhaps you can subtly mention this... IDK :lol:, might help get him onboard.

Stephen's loving school!! He has an apt-style residence so there are four of them sharing - 4 bedrooms, 2 baths, livingroom, kitchen. Enough space that they're not on top of one another. :thumright: He likes his roomies and is enjoying his classes. Big bonus - this school, apparently, has 70/30 girls to boys ratio - Stephen's liking his odds! :yfaint: Sounds silly, especially as he's only been gone 3 weeks (and I've seen him over two weekends!) but he did seem 'bigger, so much more mature' last weekend! :rof:

I haven't actually been too worried, much, much less than I would have thought but... when the worry starts, all-out panic (OMG, what if he's had some sort of reaction to the remicade, will his roommates ever check on him, will they even know he's incapacitated, how many days before three other boys notice 'hey, haven't seen S around lately'... :ybatty: Once that imagination goes... look out!! So, rather than plucking all my eyebrows, eyelashes and anything else as Dusty does, I just called him with a really lame stupid excuse so I could hear his voice and know he was alive and well! :redface:
 
Haha! My non IBD daughter can handle two jobs and a full course load but has lost the keys to her house twice!! She got off work in the wee hours, came home and couldn't get into her house so she went next door, where four guy friends live...the door was unlocked and cracked open!!!! so she just sacked out on their couch and left the next morning no one ever knew she was there!!!! Truly freaked me out, if it has to be one way or the other I guess I'm glad she locks her self out instead of not locking up at all!! The same had happened with her roommate the week before and she as well found the guys door unlocked and borrowed their couch with them non the wiser!!
 
OMG! LMAO!!! I'm not sure if you've made me feel better or not! :yfaint: :rof: :rof:
 
So sorry he's not feeling well Clash... :(

I know this is probably along shot - but if the knock in the eye/head was hard enough to cause discoloration - could he have a (mild) concussion?

Signs and symptoms of a concussion may include:
Headache or a feeling of pressure in the head
Confusion or feeling as if in a fog
Dizziness or "seeing stars"
Ringing in the ears
Nausea or vomiting
Slurred speech
Fatigue

Some symptoms of concussions may be immediate or delayed in onset by hours or days after injury:
Concentration and memory complaints
Irritability and other personality changes
Sensitivity to light and noise
Sleep disturbances
Psychological adjustment problems and depression
Disorders of taste and smell

Seek emergency care for a child who experiences a head injury and:
Vomiting
A headache that gets worse over time
Changes in his or her behavior, including irritability or fussiness
Changes in physical coordination, including stumbling or clumsiness
Confusion or disorientation
Slurred speech or other changes in speech
Vision or eye disturbances, including pupils that are bigger than normal (dilated pupils) or pupils of unequal sizes
Changes in breathing pattern
Lasting or recurrent dizziness
Blood or fluid discharge from the nose or ears
Large head bumps or bruises on areas other than the forehead, especially in infants under 12 months of age

I know he has other things going on and I was trying to remember the timeline you gave after reading the thread.. Hope he feels better soon!!
 
Thanks, it could be and that is why we went to the GP, I figured he'd want a CT. But GP said there doesn't seem to be anything neurological going on as far as the GP could tell with all the little physical examinations he did. He didn't think we were dealing with a concussion since the headaches started before the knock on the head as well as the fatigue. He didn't want to put C through a CT scan unless there was good reason and he just didn't feel anything C was exhibiting was concussion related. If his headaches do continue I guess we will have to do a CT.

He just got up about 1pm and there was no headache, he says he feels tired still like no energy but says he doesn't feel bad. He seems to have more kick in his step, he is studying Spanish and his spirits are up. He says he feels well enough to go back to school tomorrow, so we will see. He ate a good lunch and has had a bm(it was light 'n fluffy..haha).
 
Oh man Clash, I am so very sorry to hear that C is still having issues. :(:(:(

I can see why you are so frustrated! Ugh! I agree where you are going with this. :ghug:

There is a definite need to try and separate what is going on here and I too would be starting with the fatigue...it was pre existing but is Metho feeding into it...and move on from there.

Sending loads of luck and well wishes that you are able to get to bottom of things and soon!

Thinking of you both. :heart:

Dusty. xxx
 
There is no fever or anything to indicate the flu. But I guess anything is possible.

Thanks Dusty, I really think you are right there was existing fatigue(possibly start of a flare right before remicade) and now the MTX is adding to it.

Since I've posted this morning C has been up and going, it is apparent he feels much better. You can see it in his demeanor as well as his energy level. He has been up and out of the bed, moving around, took a shower, hauled off the garbage and eaten twice. He says it feels as if a fog is lifting.

He agrees that he should take the MTX on Sunday and see if things decline. If they do, he wants to start moving the methotrexate toward Fridays instead of Sundays. He says if he feels the side effects are just too much then he wants to try the MTX injection.

So if this is all the case and we do move to Fridays do we just move a day each week, ex Sunday this week then Monday the following week, then Tuesday the week after? Or do we move backward one day each week, ex Sunday this week, Saturday the next week, Friday the following week?

I'll ask the GI, I'm going to wait and see what happens after taking the MTX this Sunday then call and update them.
 
Clash - For what it's worth, my daughter switched to the MTX injection and it helped a lot. She eventually had to discontinue MTX (two separate times!) because of nausea, dizziness and fatigue, but I feel like switching to the injection helped her stay on it for a quite a bit longer than she would have on the pills. The injection is very easy to give- she's 16 and gave it to herself. It's a tiny needle.
Also, if side effects are an issue have you considered taking Zofran? That also helped my daughter a lot.
 
Maya142, C hasn't mentioned nausea with the fatigue and headache, but I think if it happens again next week I will definitely give him some Zofran, and see if it helps, thanks.




Thanks, Gmama for the support!

He does seem a lot better this evening, I wouldn't say 100% but definite improvement. He says he is going to school tomorrow. It is his birthday Saturday and I know he wants to feel better so he can spend some time with his friends.
 
So I need someone to look at this and see if they can make any more sense of it:

Timeline:
4 weeks ago-complaining of headaches/light sensitivity
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My first thought is pseudotumor cerebri. Can happen anytime but typical in those who have been on prednisone.Need opthamologist to rule out which I would have thought he would have done when the episcleritis was diagnosed. But it might be worth calling eye docs office and asking if a new exam is warranted.

http://www.hopkinsmedicine.org/neur.../headache/conditions/pseudotumor_cerebri.html

2 weeks ago- GI appt/remicade infusion- C complained a little of fatigue, GI fears start of flare puts C back on MTX but at 7.5mg per week
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Why such a small dose if he thinks he's flaring? I would expect him to hit it with a larger dose to try to stop it.

Sunday before last we take first dose, Monday he seems more fatigued.
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I'd chalk that up to flaring if he is which it sure seems to me like he is

Tuesday- fluffy stool and more than one bm, his eye is bloodshot in the corner, I fear episcleritis take him to the eye doc and yep it's episclerities.
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Episceritis is strongly associated with active IBD

He remains fatigued but does seem to improve as the week moves on as far as energy. No loss of appetite, no fevers, ulcers, or trouble with bowels, no pain.
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Improvement in fatigue does seem to suggest he's fatigued from MTX but I agree with GI that it is a very small dose. May just be that flare is calming down a bit if he's been resting

This Sunday- MTX day. He had spend Saturday night with a friend and during a friendly brouhaha he gets clocked in the left eye. There is a cut, no concussion, but a knot.
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Well enough to go to a friends doesn't sound like a kid who's flaring OTOH

Monday- severe fatigue, doesn't get out of bed all day, complains of achiness has 4 bowel movements all fluffy and skin tag seems inflamed.
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Two things - probably over did it with the sleep over. And sounds like flaring esp. with skin tag present/inflamed. If he still has skin tags our GI says he's not in remission.

Tuesday- complains of severe headache and fatigue, I literally wake him up to eat something, he sits up eats it and goes right back to sleep. He slept from 11pm the night before to 3:30pm Tuesday when I got him up to shower and go to GP. He says he feels awful but it seems to intensify when he sits up. GP checks him out runs blood work and feels C is dealing with the start of a flare or the headache/flu like feeling/fatigue is a side effect of the MTX he is experiencing. Speak with GI nurse when lab work returns normal and she says doc wants to wait a week then possibly do FC test and maybe HACA. Still no pain, one bm yesterday, with a string of red blood(C says he things it is from skin tag but it looks embedded in bm. Blood in bm was after speaking with GI nurse.
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Unless you are talking to a Nurse Practitioner who works closely with the GI I would not count on a lot from the nurses. They have their standard questions (as someone else said) and are not equipped to tailor them to your child. That's what the GI is for one hopes.

The MTX is not going to kick in right away. It may take a couple weeks at least before you saw any positive effects from it. That is probably why the GI is waiting.

I know you are frustrated but I think that except for switching to IM MTX and taking h im back to the eye doctor you are stuck with watchful waiting. A phrase I personally loathe.

Remember to breathe and take things one day at a time.
 
Thanks, Patricia!

My first thought is pseudotumor cerebri. Can happen anytime but typical in those who have been on prednisone
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The eye doctor said it wasn't pseudotumor cerebri, at the first visit before the episcleritis flared. But I didn't know what it was and didn't research it. So since C was on Pred in spring of 2012 he will always be susceptible to this? Great. He has a follow-up with the ophthalmologist Monday, I'll ask about this again.

Why such a small dose if he thinks he's flaring? I would expect him to hit it with a larger dose to try to stop it.
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C was on 25mg of MTX up until July. It was stopped due to non-compliancy. He forgot to take it while at his Dads one week, then thought hmmm...no reaction so he continued not to take while he was there. I reported it to the GI as soon as C told me and the GI talked to him about meds will not work if you are not compliant. Since his FC test level was down from 300 to 48 he agreed to discontinuing it. When we went to GI on 9/12 and C reported symptoms(scratchy throat?? lump when swallowing) the GI felt he may have been wrong discontinuing it altogether and showed us some studies on 7.5mg and the synergistic effect it had with Remicade. He said we would start there and reassess if need be.

Well enough to go to a friends doesn't sound like a kid who's flaring OTOH
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Both weeks with MTX it has happened this way, he takes the dose on Sunday, fatigue ramps up on Monday, by Tuesday he doesn't feel well enough to get out of bed(flu like aches/fatigue/severe headache), Wednesday more of the same but not as much sleeping. On Thursdays he starts coming around, out of bed, works on make up work, feels foggy/hungover but not achy, more talkative, animated, engaged, then Friday he seems almost normal.

If he still has skin tags our GI says he's not in remission.
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I thought the flap of skin remained even when not inflamed. I haven't gone in great detail, nor has the GI about his skin tag, other than when I have asked him to check it he has said that it was or wasn't inflamed(in fact I'm not sure that the GI has ever seen it inflamed) C just tells me if he goes to the bathroom a lot(4 times in a day is a lot for him) then the skin tag feels raw when he wipes.

He was easy to wake up this morning, ate a decent breakfast, went to school, has made up all his tests and is now participating in a fundraiser for the school. The only complaint today is his allergies are a little haywire. My husband and I had planned a weekend house improvement(yardwork, fall planting, pressure wash the house) and C said he really thinks he feels like helping.(at his age I would've rode the headache/achy fatigue thing right through the chores!!)

I am eager to see what happens after this Sundays dose, if things start going downhill on Monday again then I think MTX side effects have to be playing a part. I think if it is side effect related then I would want to move to the injection instead of just moving the dose to Friday so it doesn't affects school but C wants to try that first.

Ok I'm just going to breathe.(and possibly have a glass of wine!)
 
Patricia, we did Fridays the first time around with MTX, for the same reason, though he ended up never having side effects. It(MTX) eventually got shifted to I think Wednesday due to a virus.

I wish I would've have started his doses on Friday this time around as well but since he didn't have side effects last go round it didn't seem warranted.

He just delivered me a plate from his school fundraiser and said he's felt fine and was going to help out with the fundraiser clean-up, oh and while he was absent he was voted representative for his grade for homecoming(apparently they have a queen and king for 12th grade and male and female reps for 9-11). He said he guessed that made him a prince so all entitlements should apply!HAHA
 
Clash said:
while he was absent he was voted representative for his grade for homecoming(apparently they have a queen and king for 12th grade and male and female reps for 9-11). He said he guessed that made him a prince so all entitlements should apply!HAHA
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Sweet! Congratulations C, but I think the princely entitlements are only from school right?
 
If it goes to his head...............

Hand him a broom and say, prince eh? Here's broom and this is the new story of Cinderella.:rof:


I'm glad he's feeling a bit better.:hug:
 
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I don't know if pred is a long term risk for pseudo tumor cerebri although I do know of one young cancer patient who developed them about 1 year after stopping high dose pred.

Here's some more detailed info on the CNS effects of pred

http://www.ncbi.nlm.nih.gov/books/NBK13780/

Central Nervous System

Corticosteroids affect the nervous system indirectly in a number of ways, by maintaining normal plasma glucose levels, adequate circulation, and normal electrolyte levels. Direct effects of corticosteroids on the central nervous system occur, but are not well defined. Corticosteroid levels influence mood, behavior, electroencephalograph patterns, memory consolidation, and brain excitability. Chronic glucocorticoid treatment causes cell death in hippocampal neurons in rats, and elevated glucocorticoid in the hippocampus is thought to play a role in altered cognition, dementia, and depression in aging humans.62 Patients with Addison disease are subject to apathy, depression, irritability, and psychosis,63 symptoms that are alleviated by glucocorticoid, but not mineralocorticoid, therapy. Cushing disease patients sometimes develop neuroses and psychoses that are reversible with the removal of excess hormone.64 Increases in brain excitability in hypercorticism and after mineralocorticoid treatment are a result of electrolyte imbalances. However, increased brain excitability induced by cortisol is not due to changes in sodium concentration. Chronic glucocorticoid treatment can also result in pseudotumor cerebri, primarily in children.65

Now you know why I tend to rant against the unbridled use of pred with our children. And that's just the CNS effects.
 
Thanks Patricia, I appreciate this information, it may be a good link in the Pediatric IBD articles and research thread as well?

Steroids really scare me. I've seen steroid dependency in CD and it is such a struggle and so sad to see.
 
Congratulations to C on being voted Class Prince! :king:

And..:dusty: :bdayparty: :dusty: Hope he's having a wonderful day!
 
Clash, I'm wondering if he didn't have a virus such as a meningitis with headache and eye sensitivity or even mono with his having a scratchy throat at first with fatigue. I'm glad he is recovering now and hope it continues.
 
MLP when you are including skin involvement are you referring to C's anal skin tag?

I read the article it seem to imply all the eye manifestations were intraocular, I didn't think episcleritis was.

Well from Friday on the weekend has.progressed normally, he helped with all the yardword, pressurizing the house, organized the shed. He had some classwork to catch up on so worked on that too. For his birthday, his closest friends live right down the road and they invited him over to eat and hangout. Their Mom said he did fine and she was so glad to see him participating and laughing and enjoying himself. He said when he returned that he had a bm while there, though and that would make 3 for yesterday, not much each time and they were in betweet 4 and 5 on the bristol chart.

He will take the MTX tonight so if the flu like fatigue and/or headaches return I'll contact the GI.
 
Any eye inflammation counts -
Uveitis is the most common but conjunctivitis , any really...
Ulceration perianal count as skin as do other skin rashes

Etc...

Your Gi/Rheumo would be able to tell you as well as othomaolgist
( includes light sensitivity )
Symptoms can be spread over years
 
I'll have to mention it to his eye doc tomorrow. The light sensitivity hasn't returned since the ophthalmologist treated the abrasion on his cornea with the antibiotic drops. The eye doc felt the abrasion was causing the light sensitivity because it was a pretty bad one but was not causing his headaches.

At the second appt. a week later when his episcleritis flared he asked C if he was still having light sensitivity and C said no, and the doc felt it was due to the abrasion healing so well.

I don't know, I may mention it but it seems so unlikely since all of C's symptoms can be attributed to a CD flare or med side effect. But it could just be me I'm of the mind "When you hear hoof beats think horses not zebras".
 
Clash said:
he helped with all the yardword, pressurizing the house, organized the shed.
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I'm glad he's feeling better and enjoying himself and helping and...just out of curiosity, what exactly do you mean "pressurizing" the house??
 
OMG! HAPPY BIRTHDAY PRINCE C!!!

happybirthdayemoticon.gif


Hope your day was a brilliant one! :):):)

Dusty. :heart:

Bloody hell Dex! I'm not even a Yank but I understand the lingo! It means washing the outside of the house with a pressure cleaner!
 
Ha! That was a bit odd, huh? I meant to say pressure washing! Sheesh, my brain must be feeling some pressure and trying to subtly get the message out!!
 
Don't worry Dex, I didn't know what it was either! :lol: I'd just figured it was a 'southern' thing. :D
 
My sons skin tags were the last thing to go when he got into remission. But go they did - vanished as if they had never been there.

If the skin tag is getting inflamed then it would be my understanding that he's having a mini-flare - maybe limited to the rectal vault or rectum area.
 
Still just hanging out in wait mode. He took his MTX Sunday, no flu-like achiness or severe headache and fatigue. He didn't want to take the MTX, he was afraid he was going to feel horrible again.

It's Tuesday and other than him complaining of "being tired" we haven't had the awful flu like fatigue or headache yet(touch wood). Every time I say ooh things seem better he agrees but says he still feels tired just not "can't get out of bed" fatigue. He's went to school Friday, Monday and today.

The only other thing, is the skin tag, I got a look, finally. His is a type 1 skin tag(found it on exam report of first colonoscopy results. It wasn't active at the time of the first scope either. Now, it looks maybe a little red but isn't swollen or anything. He has had several bowel movements in the last 4 or so days that the bm seems to be encased in slightly slimy blood(type 5 and 6 on Bristol Chart). Once when he wiped there was blood on his tissue, much more than a smear more like a covered the whole square. He said he then wiped to see if it was the skin tag but there was nothing on the tissue.

I guess I'll put a call into the GI tomorrow and update them.
 
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I was going through everything I had written down, since we started seeing the first GI that diagnosed C, actually since the GP said C was anemic, but not much info there.

Apparently, after the first colonoscopy in recovery or some time after, I jotted down that C had an "elephant ear skin tag" and wasn't the "worrisome kind". I was talking to my husband about the note and he said he didn't remember that convo but he remembered the Ped. GI saying something about C's tag not being the serious type.

This is what I have found online:

Skin Tags

Skin tags occur in up to 37% of Crohn's disease patients.15 There are two types of skin tags that can occur.16 The first type is the typical Crohn's disease skin tag, which is a large, edematous, hard, cyanotic skin tag. These skin tags arise from lymphedema secondary to lymphatic obstruction and often coexist with intestinal inflammation. Excision of these skin tags is contraindicated as poor wound healing may follow. Management should be directed at treating the intestinal disease. The second type is a flat and broad or narrow, often referred to as “elephant ear” tag; these tags are soft, painless skin tags. The latter type may interfere with personal hygiene and if extremely bothersome may be excised once active rectal inflammation has been excluded.
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I've got to put a call in to the GI and report latest symptoms and I am going to ask about the skin tag. The only other thing I can remember is that it seemed the MRE in February said trace enhancement of the right perianal wall. It also said something about clinical significance unknown.

No changes afaik, with how C is feeling. I still get the "I'm tired" but it hasn't seemed to hinder school or greatly affect mood.
 
Clash said:
No changes with how C is feeling. I still get the "I'm tired" but it hasn't seemed to hinder school or greatly affect mood.
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Low simmering inflammation = the devil you don't see. Been there, done that. DS still pushed through school, sports, etc. not realizing things were not well and it took us forever to get a GI to take us seriously. Yes, he was functioning and moderately happy, but he wasn't quite right either. Two years of that!

Hope your GI is more proactive than our former GI's and you get answers soon. Thinking of you!
 
Just wanted to say I'm thinking of you and C and hope things turn around and you figure out what is going on.
 
I haven't called the GI yet and updated him about the symptoms. I was going to call yesterday afternoon after C got home from school so I could get an update from him but there was only one bm yesterday and it was normal so I held off on calling. Today has been the same, one bm, normal. He was a little tired today but stayed up late working on a paper so that is probably why.

Thanks for the support guys!
 
I so hope things continue to settle for C, Clash. :ghug:

Where is the skin tag in relation to the perianal wall?

Thinking of you both! :heart:

Dusty. xxx
 
Thanks, Dusty!

Do you mean in reference to the statement on the MRE about trace enhancement?
 
:lol: Nope, no Yankee eye rolls here! :yrolleyes: You are spot on Clash, that was exactly what I was getting at.

Dusty. :)
 
O.K. so don't leave us in suspense Dusty...you got the info now spew forth your pearly words of wisdom!
 

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