Not Feeling Well Again

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

D

DanceMom

Joined
Feb 17, 2013
Messages
2,005
A had been doing so well since starting the Pentasa 2 1/2 weeks ago. She only had diarrhea once and didn't complain of a single stomach ache. Her EN did get worse but we were warned that the Pentasa may not be enough for the rash.

And then....the vicious cycle started again yesterday afternoon. We were taking a break from the dance competition and went out to lunch with some of her teammates and their families. I noticed it was taking her awhile to eat her food and typically she eats like a shark (thanks to the Periactin). I also noticed she was making frequent bathroom trips and looked pretty run down. As we were leaving the competition she told me her stomach hurt and that she just wanted to lay down. She NEVER says that! We came home and she rested in my bed a few hours watching TV but by 8:45 was moaning and crying out. I did convince her to drink some water and eat a plum. She had a total of 6 BMs yesterday, 3 of which were diarrhea. Woke up this morning doubled over and saying she felt nauseous. She did eat a good breakfast and insisted on trying to go to school and make it all day.

I put in an email to the GI nurse and I'm still waiting on a response. Totally bummed though.
 
Does she get stressed or worked up for competitions? As a Mom of 3 boys, competition can bring on tons of intense energy that could wear out my son. We ended up adding tons of extra fluids and B12 to help with his energy levels during games (especially tournament weekends)...

I pray this is just a hiccup for her (and you)!!
 
She doesn't get overly stressed but does get excited. It makes for some very long days. I made sure she stayed well hydrated and got plenty of sleep as well.
 
The nurse just responded to my email. (I love how convenient it is to communicate with the GI staff!) She said the doctor feels that the Pentasa is at a good dose and doesn't want to change that at this time. If she is still feeling unwell on Wednesday he will have her take 20 mg of Prednisone/day. No further information was given. The prescription has been faxed should we need it and we are to update via email on Wednesday.

Her school day ends in an hour and I haven't heard from the school nurse. Fingers crossed she is feeling better!
 
I hope she is feeling better. Excitement causes symptoms for Ryan too, just the same as nervousness. Hope that's all it was.
 
A says she's feeling much better and even went to dance class tonight. I tried to convince her to stay home and rest but she told me she had things to work on, lol. Have to admire her determination!

She just picked at her dinner, claiming she isn't really hungry. She just called me in to look at her BM, and while it is mostly formed it is full of blood. This just pisses me off honestly. I'm no longer just bummed. I'm pissed. She felt great for 2 weeks and it probably had nothing to do with the Pentasa. It is all just part of this stupid cycle and I hate it. I realize that I'm having a minor tantrum right now but since I have to remain calm in front of A this is the only place I can vent.
 
Hi DanceMom - I'm sorry to hear about your daughter. I'm currently on 4,000mg of Pentasa and 40mg of Prednisone a day. I was doing well, but recently started having blood in my stool as well. My Crohn's was classified as moderate/severe two weeks ago, and i'm on the meds to help. Just recently did I start having a couple issues again, which is discouraging.

That's really great that you can e-mail your GI Doctor/Nurse! So much better than calling! But, after reading your comments, make sure that your daughter doesn't stress herself out too much. Sometimes, the extra exercise can make things worse. I know that when i'm flaring, despite how crappy I feel, I still try to put on a happy face and be strong. But, it doesn't always work out for the best, unfortunately.

I hope things get better soon!
 
DanceMom, I'm sorry A is doing poorly again. I was hoping it was just the stress or a new bug, but that was shot down when you said her stool was full of blood :(. I hope she is feeling better. Was she already on prednisone, and did the doc just increase her dose?
 
No, we opted to try the Pentasa alone for starters. Plan B was to add Entocort but that has been changed to Prednisone.

It is such a tough call when it comes to dance. Her best friends are there, girls she has danced with for most of her life. They are like family. They are very supportive of her and protective of her when it come to her health. She wants to be there. If I made her stay home against her will it would make her extremely upset and emotional. So for now I send her if she wants to go and tell her to take it easy.
 
Twinkle Toes, How can Pentasa handle Moderate to severe crohns? I guess the prednisone...but that's not a good long term med, is it?
 
Sorry to hear she is having issues again. It is very frustrating when they do so well for a while and you get your hopes up! Hope this flare doesn't last too long!
 
Sorry to hear she's not feeling well, DanceMom. I had a lengthy discussion with our GI on Pentasa just yesterday. After we figure out what's going on with DS right now (virus or flare), he wants to wean him off Pentasa. He said study after study has shown that it simply isn't strong enough for most people and wonders why our old GI put DS on it in the first place. It's very frustrating swimming through all these drugs.

Why pred instead of Entocort?

I hope she feels better soon. DS wanted to go to school today because he has a tennis match AND a band concert tonight, but he looks like a walking zombie. The diarrhea is taking a toll on him and he's not eating much either. I think these kiddos push through more often than they should sometimes. One day at home might be worth two dance competitions later. I'm not sure kids always realize that. Always a tough call though.
 
I understand why our GI wanted to start with Pentasa and I agree with that choice. At this time her inflammation is considered mild and he's hoping that Pentasa will do the trick. He acknowledges that it likely won't work forever but since she's so young he doesn't want to start with "the big guns".

I'm not sure why he switched from wanting Entocort to Prednisone. Perhaps because her EN has gotten so bad. She has 20+ lesions right now.

A woke up and just looked run down this morning - dark circles under her eyes, no smiles, very quiet. Said she felt tired and that her stomach hurt a little. She ate a good breakfast though and trudged on to school. No dance class tonight so she can lay around and watch TV.
 
DanceMom said:
A woke up and just looked run down this morning - dark circles under her eyes, no smiles, very quiet. Said she felt tired and that her stomach hurt a little. She ate a good breakfast though and trudged on to school. No dance class tonight so she can lay around and watch TV.
Click to expand...

Sounds like our morning. :(

Hope she has an ok day.
 
A seems to be feeling decent but hasn't regained her appetite. She was very quiet today though so I could tell she wasn't quite herself. Had 5 BMs today, 2 were diarrhea. One of them was green and quite obviously included 3 undigested grapes from a friend's snack (that she ate 5 hours prior). Never thought I'd so intently check out poop......
 
DanceMom I'm so sorry she's still struggling.
I hope the pred does the trick for her.
Grace had little side effects from it.
The biggest was mood swings:ymad: or should I say....princess rages.:yfaint:
 
Farmwife - What was her dosage like? I'm trying to figure out if A is on a low dose...standard dose...high dose...
 
Grace at 4 yrs old was on 20 for two weeks and then stepped down by 5 every week.
What is A on?
 
A will be taking 20 mg/day as well. I don't know for how long or what type of step down. I guess we are on a wait and see basis. She weighs 48 lbs. How much does Grace weigh?
 
Hey dancemom..sorry your girl is feeling so bad. Poor pumpkin:(

One thing to keep in mind with the kiddies is that their disease does seem to progress much more rapidly when undertreated than in adults. Mild can go to moderate to severe quickly. I totally appreciate a conservative approach and was actually hoping for the same with my daughter but our doc is a top down doc (well and her disease was extensive and severe). Top down advocates site quick control is best for mucosal healing and has shown much fewer surgeries down the road.

Not trying to push you one way or the other just trying to give a little positive to the scary other side.

I hope the prednisone works quickly and she can get on. Will the prednisone work for the EN also? Maybe a silver lining of sorts?
 
DanceMom said:
A will be starting Prednisone tomorrow morning. Fingers crossed the side effects are minimal!!!
Click to expand...

Our GI doesn't think so on Prednisone. Our old GI gave it out like candy. Current GI avoids it at all costs. (I know it seems like; Then dishes up the biologics and Mtx...kinda confusing.) But I do think Prednisone has side effects for kids but probably in long term use.... That's the big push for other drugs...always preceded by, "this will get them off steroids".

Hope pred is short term and kicks her immune system back on track as it is designed.
 
Last edited:
Hi DanceMom,
We are still very new, but wanted to share the little bit of history we have as we also are doing prednisolone, Nick is 72lbs and was prescribed 30mg we did it for a week with great success. The plan was to reduce by 5mg per week, the first taper went well but we discovered that I had not been giving enough Salofalk and his dose was upped, he also then got a throat infection and perhaps due to a combination of things his bloody D came back with a vengeance. After a trip to the ER which was probably unnecessary (newly diagnosed and easily panicked mum ) we were taken off Salofalk and the pred was put back to 30. We have had a full week of normalish bm's and very little tummy ache. We started to come down by 5mg two days ago and we are still doing OK. Plan is to introduce different maintenance next week and continue the tapper, his new blood work shows all to be in the normal range.
Side effects after 3 weeks include, feeling very hyper and exhausted all within a short space of time and going from all is well with the world to worrying about all and evryththing. Both symptoms have been short lived and he shrugs it off as soon as it arrives. His appetite has increased and he does have the beginnings of the very round face. All in all they have been manageable thus far, having said that can't wait to get him off them as I am having a genuine love hate relationship with the wonder drug.
Good luck. Hope she feels better super quick.
Have a great week end.
Jane.
 
Jane and Nick said:
All in all they have been manageable thus far, having said that can't wait to get him off them as I am having a genuine love hate relationship with the wonder drug..
Click to expand...

A lot of us can relate to this! The love/hate thing. Our first time on Pred my DS gained so much weight. (That was great!) I was naive to the 'round face' and thought he was just gaining weight there too! I had to sleep in the room with DS during the weeks the dose was high...he'd wake me up and want to play games. Once we made hot chocolate. I'd have to tell the school cause he'd get into so much trouble there, DS would tell me 'My mind is going WIZZZZZZZ'...oh the memories...:) Somewhere there's a thread on Prednisone stories. Funny to read!

We had sleep trouble and inappropriate behavior when the dose was 40mg. When it was lower it wasn't so bad
 
Well.......A had one good day........

She continues to have watery diarrhea and stomachaches. How long does it take the Prednisone to work? She has zero side effects at this point. Do you think the dosage is ineffective or it just hasn't been long enough?
 
Could be one or both.
When DS was only on 20mg it was not enough .
We never saw a real decrease in symptoms and were too new at it to know any better.
The second round of pred we learned ( higher -30 mg then 20 for more than a few weeks ;) )
Lots of side effects though :(

Good luck
 
I don't know if it helps, but DS is 78 lbs and was prescribed 40mg. It took care of his symptoms on day 2, but the side effects have been pretty tough. He's been a bear with marathon crying fits. I'm afraid to send him to school tomorrow.

The last time he was on pred, it took a good five days before it kicked in.

I don't think there are really any hard and fast rules. I'd call though and just ask what sort of timeline her GI was expecting, especially if she's still not feeling great tomorrow.

Hang in there, mom!
 
Grace first had 15mg of Pred for 2 weeks BUT that did not help so her GI upped it to 20mg for two more weeks and then we tapered.

Call and ask. I mean since she is on this you want it to work. KWIM
 
I'm currently on 35mg of prednisone. I was on 40, but after two weeks my doctor started tapering me when she saw that I was reacting well to the meds.

As for how quickly it started working, I felt it started working within 3-4 days for me. Lord knows the weight I gained came on that fast.
 
Sarah appeared much better after 2-3 days on pred. At the time she was taking 30 mg and was 44 kg.
 
A was definitely peppy today and I channeled that energy into helping me with chores around the house. She is still having diarrhea and bloody stools but at least she isn't in any pain and is in a good mood. I'll give the current dosage another few days before emailing the nurse. Don't want to up the dosage if the current dosage simply needs a few more days to take effect.
 
Well....maybe I won't wait a few days. The bloody stools just went to a whole new level. Typically A's stools will have red specks throughout. This last BM was much more. The stool was half red, half green...looked like tye-dye. The blood started mixing in with the water and turned the whole toilet water pink. I'll definitely be emailing the nurse a pic in the morning.

On the bright side....A is extremely upbeat and peppy and I'll take that as a marvelous side effect of the Prednisone. Trying to be positive so I don't freak out about what I just witnessed in the bathroom.....
 
Aw Dancemom! So sorry:( FWIW O is a bleeder and it often looks much worse than what it is. Doc told us predinisome could go either way...extreme happiness or moodiness...luckily with got the happies also. Silver linings. I hope all goes well with the call to GI tomorrow.
 
Nurse responded: This is ok for now. Check in with us next week.

I feel almost panicked about this. I know it looked worse than it is but it can't be good. Passing blood is never good. I just have a bad feeling that she's getting worse instead of better. That helpless feeling that no mother wants to feel.
 
Ugh! I feel your pain. Yeah, blood in and of itself doesn't peak their interest BUT if it is new or worsening then I would think they would perk up a bit. Did you tell her it is getting worse? How has it been since? Hopefully just something she ate. Fingers crossed!
 
I did email her a picture. It was very clear in the picture and you could see the water starting to turn pink. I explained that A has had blood for over a week (one of the reasons we started the Prednisone) but that this was the worst it has been. Typically there are specks in the stool but not enough to change the water color. This was alarming to me. I know they see it every day and it isn't their child so they don't panic. It may not be anything to panic over but it is worrisome. I'm going to keep a very close eye on her and if it gets worse I'll contact the nurse again.
 
Did the nurse run it by the GI doctor? (I'd probably ask...I've had nurses take charge and not run things by the doc...and it was serious -An abscess! Nurse thought I was being an over-anxious Mom. I just showed up at the GI clinic cause I couldn't get nurse to contact dr!!)
I always hate seeing blood too. Sometimes its just a one time thing...but you have to anxiously wait for the next poo
This disease is soooo frustrating
 
Things are rough. She's lost all the weight she gained so back on the Periactin she goes. We'll start that again tomorrow. Thought the Prednisone would be enough but I guess not. She's lost 4 lbs. in a week. She's still having diarrhea but also having some solid BMs too. They are all green. Haven't seen any blood since Monday night.

Last night on the way to church she started screaming in the car, doubled over in pain. One minute she is saying, "My stomach is starting to hurt." The next she is screaming and flailing in the back seat. The pain would ease and then come back. She insisted that we continue to church because it was awards night and she'd worked so hard this year. She made it through but didn't even ask for the cookies/punch afterwards (a sure sign she wasn't feeling good). When we got home I put her to bed but when I went to check on her 30 minutes later she was curled in a ball crying. I put her in my bed and cuddled her while she rolled around miserably, crying in pain. It was terrible. Eventually she fell asleep, only to wake up around midnight to cry some more. She went to school today and says she feels okay but doesn't look well at all. And every now and then I'll notice her grabbing at her right side and doubling over then trying to go back to whatever she was doing.

Things just suck right now.
 
Almost a month on the Pentasa. Have to refill the prescription tomorrow actually. I don't think there is a plan to change it any time soon.
 
If pentasa is going to work
You should see a improvement by the one month mark-
At least that is what we were told by our primary Gi and second
Opinion Gi .
 
What?! Time to call the GI again. Poor little darling. I hate hearing this. 4 pounds in one week is too much!
 
I noticed her face didn't look as full so I had her weigh....just as I thought. She'd lost the weight. Periactin is some interesting stuff. Worked so well and she gained 4-5 lbs. in a month....then lost it all a week after coming off of it. I really thought the Prednisone would be enough to keep the weight on but it wasn't. Well, the fact that she is bouncing off the walls and doesn't sleep probably isn't helping.

I'll pray for a miracle over the weekend and update the GI first thing next week. By bedtime tonight she was feeling pretty good (though I think the Prednisone buzz masks how she really feels....) so I'll try to stay hopeful.
 
My son was a good 6 weeks in on Pentasa before we saw a notable change. The timing sticks in my mind because we had been in the hospital for 4 weeks, released and went back in within 48 hours and were there for another 2 weeks. When he was released it was starting to do the trick. It took almost a year before the dosage was raised from 1500 mgs daily to 3500 mgs daily.

So sorry to hear she's so miserable. I remember thinking Alex looked like he was in labor. The cramps initially came every couple of hours, but by the end he had them every 30 seconds - it was awful... So very sorry - I hope she feels better soon...

I love you keep her close....
 
Just wanted to send some healing thoughts. Sorry she is really struggling - hard to see them try to go to school, etc when they feel bad. Hope the Pentasa works soon - no experience with that, so no great advice, sorry.
 
Well, we had the Prednisone buzz....then the Prednisone crash (I think she hated the world for a few days there).... and now things seemed to have leveled out. She still has plenty of energy but isn't bouncing off the walls. I can focus her energy on chores around the house and practicing dance skills and she seems pretty happy with that.

We started the Periactin back up and she's already gained 2 lbs. Not sure why but that stuff works really well for her.

She says she feels good, no complaints of stomachaches or headaches. We had a few days of .....for lack of a better word..... "squirts", and that was it. So last night I gave her some Miralax and this morning she had a ton of diarrhea. Still green though. It has been green for weeks now. Does Pentasa turn your stools green? We haven't seen any blood in a few days. Seems like things may be starting to improve and I hope the trend continues!
 
Pentasa does not turn the stool green.
Its green due to fast transits
Happens with alot of kids with IBD.
WHen things are not quite right - DS goes green. BEtter than blood but...
Ds is currently green right now :(
 
Ugh, poor A. What a roller coaster she's been on. It sounds like things are getting better, but not fast enough :(. I hope that the Pentasa kicks in soon... I'm glad the periactin is helping. I've heard it said green poo is indicative of Crohn's. Has she been checked recently for c. diff? Is her poo really foul smelling?
 
my little penguin said:
Pentasa does not turn the stool green.
Its green due to fast transits
Happens with alot of kids with IBD.
WHen things are not quite right - DS goes green. BEtter than blood but...
Ds is currently green right now :(
Click to expand...

She definitely does have fast transit. We found that out when the pill cam passed in a little over 3 hours. I had a feeling that was to blame but thought I'd check since the Pentasa is blue (and blue coloring can cause green stools).
 
The casing is blue on the pentasa and the beads are white.
Sometimes if your really lucky you can see the quasi plastic like blue shell on the other end
But typically just the white beads show up ;)
 
Hey DanceMom, just getting caught up.....

Claire's poop is always bright green now - even when not in a flare. Like MLP says, fast transit. I can so relate to getting PISSED off about the blood. :ymad: Keep her hydrated and the prednisone should start doing it's job. When Claire was diagnosed at age 5 it took a few days to see a difference.

Be sure to feed her easy to digest foods while things are trying to calm down. Helps lessen the bleeding as foods pass through an inflamed colon. I'm sure you are already doing that but thought I'd throw it in.... Hope that sweet girl is already gaining the remaining couple of pounds back!

Hugs,

J.

PS Welcome to the Poop Police. I have "special flashlight".....I confess. :ybatty:
 
Green poo is a way of life around here.
AZMOM since you confused first I have to admit that I have used my dear hubby's high power head lamp as my blood poo detector.

DanceMom I hope she feels better soon. HUGS
 
Poop police here as well
Given her age not to early to get your daughter trained as well.
We point and show exactly what we are looking at that is ok and what needs an adult to see.
 
While we're talking poo lol, Nick just passed mucus with his for the first time, well I think it was because he flushed before I saw it !:ymad: But from what he described sounded like mucus. Things seemed to be going so well :ymad:
He also says his tummy is tricking him and he thinks he has to go but then when he sits there a while nothing comes, he isn't constipated but this a new thing for us. He seems to go a little bit often.
A flash light is a great idea. POOP POLICE love it! Thanks for the smile.

We are down to 20mg of pred, hoping to drop again by next week.
Oh yes, while I remember, I have read a post about some one who took a placebo before the pill cam? To see if it would get stuck? Did I make this up or has any one else read this ? I am hoping to ask our doc as she doesn't want to proceed with any more tests until things have calmed down but I want to know what's going on and begin treating appropriately, and if we could do a pre test for the pill cam then may be it would work for us.
 
Yup, it's called a dummy pill Jane. Whatever it's made of dissolves within a certain amount of time. That way if it gets stuck it's not a problem.
 
Well....her mood remains good. So thankful for that! Stools are still green. Diarrhea this morning and this last one was formed. Since we're talking poo with no shame, do your kiddos ever have formed stool that looks like chunks of food smashed together? That is the best way I can describe it---one lump of undigested food bits with bloody clumps. That is what I just saw.

And I don't use a flashlight but I do use my phone's camera with a flash. I can take a pic of the poo, then step away and zoom and analyze! HaHa!
 
I'm going on the record here - I just love you people!! Outside of parents of new born babies, this is the best poop-talking-parent-group I've ever met!

phone camera w/flash! awesome!
 
Shell - Sometimes I have to remind myself that not everyone discusses poo so casually! It has just become a very normal part of our lives and day to day discussions. If anyone ever decided to snoop on my phone they'd be in for a big surprise when they saw my poo folder! lol

A is still feeling okay but did have an accident tonight. First one in a long time. Her stool was formed but she said she just didn't feel it coming out. This disease frustrates me.
 
Sorry about her having an accident.
Talking about phones, I remember my son asking me to take a picture of his bottom so he could see how his wound was healing - told him he better delete it straight after - don't think his friends would ever recover (some things you can't un-see) :ylol:
 
We are back to bouncing off the walls and scarfing down food at a ridiculous rate. She finished her PB&J sandwich in less than a minute....seriously. And yesterday at the grocery store I had to physically restrain her so I could even order a cake because she couldn't stop jumping up and down, dancing, and knocking into people. This morning my husband caught her trying to sneak a whole bag of chips to school and she had quite the tantrum when he told her that wasn't appropriate. On the bright side, she is really improving at dance because she is now a fearless tumbler and has more energy and stamina. She never stops. lol
 
That's to funny.:lol2:

:eek: I once saw Grace while on Pred licking her toothpaste off her brush with such excitement and saying yummy.:yfaint:
 
I hear you girlfriends, Nick got the most laps in the pacer test for the entire 5th grade and the gym teacher had to ask him to stop doing push ups as he had gone passed the allotted time!
The tooth paste thing is hilarious, if you don't laugh you would cry, so keep smiling.
 
DS is on pred right now too and I'm kind of glad it's Physical Fitness testing this week at school... maybe he'll get an A in gym to make up for all the other school work he's so far behind in?

If we could just bottle up this energy...
 
So not only is she bouncing off the walls but now she's crying hysterically over things. We just had a 30 minute crying episode because she outgrew a pair of shorts she wanted to wear tomorrow. Granted, she isn't used to outgrowing clothes because she's been wearing the same clothes for 3 years, until now.....
 
When does she start weaning off the pred? Just dropping by 5mg made a huge difference for DS.
 
I think she looks great actually. I noticed yesterday while she was dancing that she has filled out and seems to have taken on more muscle. She's certainly not chubby (except those adorable cheeks!). I solved the shorts problem by finding a similar pair that I'd stashed away. They were given to her by a good friend and they were too big at the time. She's 8 and is finally outgrowing size 5 clothes! lol

We don't have a plan to wean her off the Prednisone. This is her first time using it so we're on a wait and see approach. She's still having bloody stools and I saw 2 new EN spots yesterday. Our problems are not solved just yet.
 
Jane and Nick said:
Not familiar with EN spots? But am sending hugs and support and positive energy.
Click to expand...

She has erythema nodosum associated with Crohn's. They are small red painful lumps that resemble bruises. She tends to get them around her knees, ankles, and on her forearms. These new ones are on the side of her knee.
 
Thank you for the info, I am always astounded and a little bit terrified of this condition. My son can no longer have just a sore throat or a fever or a simple pain some where. I now second guess him and question everything. A relative recently said you know to much! if you didn't question things you and your boy would be able to just get on with life but you have to blow things out of proportion, may be she is right?
 
Just wanted to update.....

A is doing great! Her mood has leveled out - she has plenty of energy but isn't bouncing off the walls, she's happy and not an emotional mess! She's rarely having diarrhea and we haven't seen any blood in a few days. She hasn't complained of feeling bad in over 2 weeks! And she's gained another pound!!

The GI emailed this morning and wants to see her in June instead of July. He's ordering some labs to be done first (not sure which ones just yet). I'm assuming we'll discuss the Prednisone wean at that appointment.
 
Got the orders for the labs. He ordered Vit D levels which is a new one for us, and also TPMT enzyme (another new one). What would the purpose of the TPMT enzyme test be? I really hope it isn't what I think it is....
 
TPMT is just to check if she can metabolize Aza or 6MP in the future. If she falls in the small minority that can't, then they'll never put her on either of those. If she falls in the intermediate range (like DS), then she can try them someday but will need to be monitored closely. Most likely, she'll fall in with the majority and be fine. It's good test to have done.
 
That's what I thought. I hope he isn't thinking of changing her medication at this time. This is the best she's been for as long as I can remember! Maybe ever!
 
I don't want her on steroids for a long time either. I was just hoping that we could wean and the Pentasa would be enough. We had her labs drawn yesterday so we'll see how they turn out.
 
That could happen!! Hoping Pentasa is enough :) Pred can 'kick the immune system back on track' I've heard. Then Pentasa keep things there.
They should already have your results if they did labs yesterday. It just takes an hour or so to get SED and CRP
(I know you know this! :) I'm just the over anxious type when it comes to labs!!)
 
We did the labs around 6:45 last night at a local clinic. I'm assuming they had to send them out...maybe this morning? I was expecting the nurse to post the results (we have an online medical record account) by Wednesday. I'm not a patient waiter! lol I honestly expect the labs to be fine though. Her labs have always been fine, even when she's feeling her worst.
 
Good luck with the labs .
But be prepared mentally for 6-mp.
Since she wasn't able to wean off pred
Your Gi moved up your appt and ordered tmpt labs.
Odds are it will be discussed.

It is hard when they are doing well but it seems from a mommy distance ( not doc)
That would be due to pred and the minute you try to wean again
A flare will be there ( they tend to get worse after you have relief from pred btw )

Not saying this is the case for your dd you might get lucky
But most literature and what I have seen around here would be 6-mp sooner rather than later.

Hugs
 
Tmpt labs take a week or more to get back.
They are sent to CA - only place in the country for the test .
 
I had a feeling that test would take longer. Her appointment isn't until the 11th but I wanted to go ahead and get the labs done now so they would be back. The lady at the lab had never heard of that test and had to call someone to get info. Guess they don't have many IBD patients there.

I have a feeling a med change will be discussed and I'm trying to mentally prepare myself. We haven't attempted a Pred wean because truthfully she isn't 100% better yet (even though she's worlds better than she has been in a long time). Her stools are always green, there is still blood once a day or so, and these stabbing chest pains have come back in the last few days. At the end of the day I just want my little girl to feel good and be symptom free, so if 6mp will do that then that is what we will do.
 
I soooo hear you!! When we recently added methotrexate it sent me back into a world of worry and what-if's and uncertainty. In the past 2 weeks it looks like my son is doing good. (He was never in much pain cause Humira was doing some- but you could tell it wasn't remission) Now that he seems better and I have hope he may start to catch up in growth I find myself relaxing a bit and thinking....ok, this mtx may be ok if it gives us remission and we can have a break. A few years back I'd never thought I'd be here.

I have friends whose crohn's kids get on aza or 6mp and stay there for years and years and years and life becomes normal. It works for many, if you have to go there. It'll be ok :)
 
It may take 3-6 months for 6MP to start working, so it is a good idea to get it going soon if it is a possibility. I think that is why your doc wanted to move up the appt. You want her to be on prednisone while it is kicking in. Don't be afraid of it. It's only one pill and so easy to take. Jae hasn't had one side effect from it that we are aware of except being sensitive to the sun. She also seems to get hot easy, but I'm not sure what is causing that! I'm glad your daughter is feeling so much better.
 
Does 6mp make you sensitive to the sun? If so, I'm not sure that is the best option for A. We live in FL and spend several weeks out of the summer at the beach. I always put sunscreen on her and she doesn't burn easily, but medications that cause sun sensitivity make me nervous!
 
Okay, so I looked it up. It doesn't cause sensitivity to the sun, but I guess I read about keeping out of the sun because of the lymphoma possibility? Never mind me, I am just going crazy I guess...
 
That is a relief! (Not that you're going crazy but that it doesn't cause sun sensitivity, lol)

I've been reading a little on 6-mp and it seems that is the standard for people coming off of Prednisone. Perhaps a stupid question, but does that mean that people stop taking the Pentasa or do they take both? I just want to be prepared and informed before this appointment. Otherwise I freeze and look like an idiot, lol.
 

Similar threads

F
does this seem like IBD?
Replies
33
Views
4K
my little penguin
my little penguin
P
How long on EEN before your child had solid motions again
Replies
5
Views
761
padrach3
P
A
What would you do?
Replies
22
Views
3K
Delta_hippo
D
S
Chronic Fissure and now more than one
Replies
11
Views
2K
my little penguin
my little penguin
F
how does this seem to you please
Replies
2
Views
1K
my little penguin
my little penguin

Latest posts

Back
Top