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I am so hoping she gets relief too! Bless her. :heart:

When flaring Matt's courses of IV steroids have always been a stock standard 5 days.

In our experience IV Flagyl is also added and for the same length of time but that may differ from place to place.

If pain is present then IV Paracetamol is given regularly with IV Morphine as needed.

Good luck! Fingers, toes and everything else crossed!

Dusty. xxx
 
Flagyl was switched to IV and Morphine was given too. GI is supposed to come by tomorrow and he wants to talk about changing her meds. Says her current meds aren't working. No kidding! Lol
 
Flagyl is now back to oral and Toradol for pain. She's only needed that once today though. The IV steroids seem to be helping the pain already.

GI came by and sat with us for 30 minutes or so. He was great and really explained things well. He ordered a blood test to check to see if 6-mp is in therapeutic range. We are just in wait-and-see mode for the time being. 5 BMs so far today.....
 
Attending just came by. Said she is still dehydrated despite constant IV fluids. She wants her to visit the playroom to see if she can handle being up and playing.

A trend I'm noticing is that A gets worse as the day goes on. By night she is crying in her sleep. I'm guessing the food/BMs throughout the day cause increasing pain. Anyone else have this issue?
 
Are they going to increase her IV fluids or give her a bolus (a bag over a short time) to treat the dehydration?

I'm so sorry to hear that she is feeling so poorly. Hope things turn around soon.
 
No, a tube has never been mentioned. I'm guessing because she has such a great appetite and wants food. And I'm not sure what the plan is for dehydration. Waiting until the GI rounds I guess.
 
GI came, said what she is feeling is common with inflammation. Wants her to go easy on dairy and fruits for awhile to see if that helps. He would like to increase the 6-mp but will discuss that with her GI in the morning. They will also discuss if a scope is necessary. Waiting to see how tonight goes. 3 BMs so far today but pain is mild at the moment.
 
"Pain control" is now Bentyl and Tylenol. Needless to say she is curled in a ball and moaning. I know they have this IBS theory, and I agree to an extent, but the IBS meds have never helped. It is going to be a long night. .....
 
Wishing you the best
DS is trailing bentyl now
Lets just say ...
Never mind I have nothing good to say about it.
 
We are up to 7 BMs today. That can't be normal, can it? The first 5 were formed, the last 2 were not and had a lot of mucus. No one seems too concerned.
 
DS has averaged 4-5 bm's a day on good days and up to 7-8 on bad days.
Our Gi is slightly concerned . But not overly.
His theory is DS's colon is spasming hence the stomach pain
And going lots of times but not alot each time hence the bentyl.

Hope it works for her .
 
Well now she's up to 8 times (last 3 were liquid) and the pain is worse. I get the whole colon spasm thing, but going 10+ times a day can lead to dehydration pretty quickly. We've tried hyoscamine and bentyl with no luck. Back on morphine for now.
 
We are home now. A is on 40mg of Prednisone and I agreed to try the Bentyl PRN. I'm hoping that once she's not in excruciating pain it will help. She will take it before physical activity (dance, swimming, playing outside, etc.).

The reason for the morphine last night was because her blood pressure went up drastically due to the pain. I have to keep a regular check on that and call the GI if it goes up again. At least she got a good night's sleep!

She's still hurting but we are managing at home just fine. She's only had 4 BMs today, only 1 of them loose, so that is a definite improvement.Hoping she continues to get better!
 
She's still on 25mg of 6-mp for now. The on-call GI wanted to up the dose but her GI wants to wait until the lab results to see if she is in the therapeutic range.

And lets just say that A was less than thrilled with taking the 6-mp when she realized it came in a bag that was labeled "Caution - Chemotherapy Drug" and 2 nurses had to be present to administer it.
 
Oh yes, definitely had gloves. But several nurses/techs wore gloves every time they came in the room so that didn't phase her.

Okay, Friday's lab results came in so I have a few questions. Her bilirubin is only slightly higher, and her ALT is still high but is lower than last time. No real worries there. Alk Phos is falling - was at 113 two weeks ago, now at 88 (184-415 norm). Is that something to watch? And now her globulin is low - 1.9 (2.0-3.8 norm). Could that be due to the medications she's on?

Also, her CBC was completely normal. Shouldn't she have some low levels if the 6-mp is working? Two weeks ago she had low lymphocytes, monocytes, and eosinophils.
 
I'm not certain about the Alk Phos and Globulin but I wonder if nutritional deficiencies are starting to have an effect on these values. They both have the potential to fall when malnourished but no doubt there may be other reasons that could be playing a part.

It is not uncommon to have a normal CBC when taking immunosuppressives. Matt certainly has lower than normal lymphocytes but when I posed this question to others it would appear that just as many have normal lymphocytes as those that don't.

Dusty. xxx
 
With all the diarrhea and vomiting I do worry that she isn't absorbing the food properly. She's losing weight as well. She was 44 lbs before Periactin or any other treatment, got up to 53 lbs fairly quickly, and is now down to 48 lbs. She's easily fatigued, even after taking a mid-day nap. I have no idea how she's going to start school in less than 2 weeks.....
 
The GI that saw A while she was last in the hospital phoned today to give us the results of her lab work. He said her metabolites were low and she needs to now alternate the 6-mp 25mg/50mg. Oh geez I hope I don't screw that up! He said to call tomorrow to discuss her symptoms further so they can make a decision about the Prednisone taper. Her little face is quite puffy (which she hasn't noticed, thank goodness) and she definitely has increased body hair. She jokes that she is turning into a Sasquatch. She's ready to dump that drug but I'm nervous because she's still having symptoms of a flare. The most recent being joint pain in her knees and she has never had knee pain before unless it was EN related. Keeping my eyes out for those stupid red lumps to start popping up again.

I have a question for you more experienced parents. It has been about a month that A has complained of pain in her lower left abdomen. Always in the same spot. The pain is manageable at this point, and I realize that she is in a flare, but I guess I just worry that something is brewing in there. Is this likely just inflammation that needs more time to settle? Prior to this her pain has always been generalized and will come and go. But now her pain is localized and constant (although sometimes dull it is always there).
 
I hate the alternate dosing!!!:voodoo:

We did that for a year and it is hard to keep track of what your dose is that day. Because it is not like you can say "Every Monday, Wednesday, Friday, Sunday the dose is 50mg. It switches days every week. I finally made a calendar and taped it to our med cabinet so I could keep it straight. Even if I didn't update it every month I could reference it to find out where we were at.

Also I got little plastic pill packets to keep the extra 1/2 pill in. Otherwise they seem to crumble after being cut. I think this was more with the allopurinol than the 6mp though if I remember correctly. Just make sure to wear gloves or wash you hands while cutting.

(((((hugs)))))
 
they have thirty day pill boxes so you could just load up at once.
Thankfully our GI would not "do" alternate day dosing.
he was concerned over the levels being too high one day and too low the next day.

Keep in mind decreasing pred can cause joint pain ---
 
Good idea on the 30-day boxes. I suppose I could use our 7 day one for now (we quit using it because her pills wouldn't all fit!).

We haven't even started the Pred taper yet. She's supposed to have a few more days at 40mg and start tapering on Monday. Is it a good idea to taper if she's still having symptoms of a flare? I feel like such a rookie! lol
 
I'm guessing once you start filling him in on her symptoms, he will likely have you wait on the taper. How are her Sed rate and CRP? She obviously still has something going on.

Not sure on the pain... lower left? What's there? Colon?
 
Her CRP was checked 4 weeks ago. It has always been in the normal range so it isn't really a good indicator for her. We've only really gotten good indications from scopes and the pill cam. MRE was somewhat helpful as well. She has never been a simple child, lol.

And yes, GI said it was her descending colon if I remember correctly. Her last scope (Jan) showed inflammation in small intestine and colon. Pill cam (April) only showed ulcers in small intestine. But her pain is definitely in the colon area. Being skeptical at first (because kids boo-boos can jump locations if you kwim) I tried to convince her the pain was previously on the right side. She told me, "Get real. I know where I hurt." Yep, she's definitely having pain there! lol
 
Sorry to hear your daughter is still struggling. I tend to use my phone to remind me of things these days otherwise I forget everything!! Can you set up a reminder around pill time that tells you whether it's 25 or 50mg?
I don't have any experience with Pred, so no great advice, sorry. Hope it goes okay if you do start to wean her. Is it worth asking for another MRE to check that area that hurts her? Hope things settle down.
 
On-call GI phoned this morning. I guess the plan is to work her to 50mg of 6-mp daily but they are concerned about her liver. I'm slightly on edge about the whole thing as well. The prednisone taper is postponed for now. They are nervous about lowering the dose when the 6-mp is not yet therapeutic and she is still experiencing symptoms. Fortunately she's had a fairly good last few days so I hope that trend continues. School starts a week from today!
 
She was having it every 2 wks but they decided to hold off this week. They will retest either next week or the next, depending on how she's feeling.
 
With the increase in dose, even though alternating, and liver concerns perhaps they could pull them into weekly for a few weeks??

Dusty. xxx
 

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