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07-30-2013, 06:32 AM   #121
crohnsinct
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Ah yes but were they wearing the infamous purple gloves?
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
07-30-2013, 07:23 AM   #122
DanceMom
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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.
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
08-02-2013, 04:32 AM   #123
DustyKat
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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
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08-02-2013, 11:31 PM   #124
DanceMom
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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.....
08-07-2013, 04:49 PM   #125
DanceMom
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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).
08-07-2013, 04:56 PM   #126
Johnnysmom
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I hate the alternate dosing!!!

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)))))
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Dx Oct 11 2011 Crohns disease
Prednisone done 12/30/11
6mp 50mg every day
Allopurinol 50mg -discontinued per new G.I. on 11/01/12
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08-07-2013, 05:08 PM   #127
my little penguin
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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 ---
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08-07-2013, 05:13 PM   #128
DanceMom
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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
08-07-2013, 05:27 PM   #129
my little penguin
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WE have tried to wean while flaring
we got to a certain point then the gi had us stop.
08-07-2013, 05:36 PM   #130
Mehita
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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?
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- added Methotrexate/Folate March 2016
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- Small bowel resection, Jan 2013
08-07-2013, 05:46 PM   #131
DanceMom
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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
08-08-2013, 04:27 AM   #132
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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.
08-08-2013, 11:53 AM   #133
DanceMom
Senior Member
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!
08-09-2013, 09:57 PM   #134
DustyKat
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How often will blood monitoring be done DanceMom?

Dusty. xxx
08-09-2013, 10:09 PM   #135
DanceMom
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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.
08-09-2013, 10:13 PM   #136
DustyKat
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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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