Second Opinion!

[DanceMom]

Tomorrow is a special day! When we were fundraising for our Take Steps team we held a raffle for some pretty awesome prizes. A good friend had a connection and was able to get Legoland tickets to raffle off. Her connection wanted to be sure our family had a chance to go as well so she gave my friend 4 additional tickets to be given to us as a gift. Our girls don't know but we're going tomorrow to spend some quality family time and just relax! Can't wait! We only live about 30 minutes from the park but we've never been.

A has felt fairly well the last few days (despite the new lumps and even a stooling accident!) but I've noticed something that concerns me a little. She seems to be getting some pretty nasty bruises for no reason. Last week it was her upper arm and thighs, today it is her lower back near her spine. I would normally attribute it to dance or gym but she's on break right now and I've watched her practice at home and she didn't injure herself. She does have low wbc - 4.0 (4.5-13.5) and her rbc are on the lower end of normal - 4.07 (4-5.20). Platelets are normal. Do her counts explain the bruising? Could this be the vasculitis presenting in a new way?

 

[Catherine]

Bruising can be a side effect of some medications.

When I mentioned unexplained bruises to Sarah's GI, she mentioned the possibility of testing for clotting factors. We didn't go any further with testing as the bruising went away.

 

[my little penguin]

We tested clotting factor on DS due to vasculitis and another te for surgery
Both times normal
Also had easy bruising around the same time

 

[DanceMom]

She isn't on any medications right now (just started taking folic acid last night to prepare for mtx). She stopped taking Pentasa mid-November and stopped Prednisone late September.

Looking back at her labs there has been a steady decline in wbc and rbc since August.
WBC: 8.8, 7.4, 6.5, 4.8, 4.0
RBC: 4.68, 4.53, 4.37, 4.14, 4.07
Platelets seem to range between 250-300 (norm is 140-400) but were 224 in October and 219 now. Still very normal but trending down as well.

I realize that her numbers aren't alarmingly low but the pattern does concern me. Am I overreacting? At least being on mtx the doctor will have to order labs regularly so this can be monitored.

 

[Mehita]

I don't think you're overreacting at all. When are her next labs/appt? Our current GI is big on watching trends and not so much taking results as black and white like our old GI. I'd be interested to know what a doctor thinks, particularly with the WBC.

One of the reasons DS's GI was ok with moving to Remicade was because his labs were trending in the wrong direction over the course of six months. They were in the normal range, but big picture, not going in the right direction.

 

[DanceMom]

She sees the Rheumo on Tuesday so I'll definitely get his opinion on this. We haven't been with him long but he does take the time to sit and discuss labs with me. I didn't notice this trend until now or I would have brought it up sooner.

A had a fever at bedtime tonight. She felt fine though so I pray she feels good in the morning and our plans aren't ruined.

 

[vtfamily]

Brian'smom
what about what vtfamily son is on stelera?

not a tnf blocker so ???
Here__>
http://www.crohnsforum.com/showthread.php?t=48348
http://www.crohnsforum.com/wiki/Stelara-Ustekinumab

Yep, Gus started Stelara in March of 2013 (just before his 13th birthday), had a bowel resection to removed badly diseased section of the terminal ileum and has been doing GREAT!

This is the best he has felt in three years! No missed school days due to pain! No hospitalizations for any reason!!

He says he feels "like a normal kid." Fingers, toes and shoelaces crossed...he may make it to 14 without any new complications!!

Gus receives 45mg of Stelara every 8 weeks.

Best wishes to you!

 

[Brian'sMom]

I've mentioned Stelara to Mayo GI. He hasn't talked about that one back to me yet. (Mayo has a portal that you can send emails on). We're in holding pattern kinda...he hasn't answered my last email yet. The capful of Miralax daily we started last Thurs seems to be helping with cramps. So that makes me again think its not the TI. But I do still think Cimzia isn't getting it done. So glad to hear stories like Gus. Makes me know we aren't at end of road. Did Gus start the Stelara at the same time of the surgery? Could the surgery have been the thing he needed? And was his TI the only area that was causing trouble? My son has always had trouble in the rectum also.

 

[ronroush7]

I've mentioned Stelara to Mayo GI. He hasn't talked about that one back to me yet. (Mayo has a portal that you can send emails on). We're in holding pattern kinda...he hasn't answered my last email yet. The capful of Miralax daily we started last Thurs seems to be helping with cramps. So that makes me again think its not the TI. But I do still think Cimzia isn't getting it done. So glad to hear stories like Gus. Makes me know we aren't at end of road.

I was on Cimzia for a while. It was working at first and then failed.

2

 

[vtfamily]

Kathy (Brian's Mom),

In a nutshell, Gus' Crohn's manifests as severe stricturing disease. We have to fight it on two fronts. (A) Medication as much as possible to control the disease, reduce/eliminate inflammation/ulcerations, and manage pain. (B) Surgery to remove the badly strictured sections, basically to "wipe the slate clean." However, there is only so much bowel to slice and dice, so we have to be careful.

Gus developed a stricture in the duodenum in 2011. It is in an awkward place and cannot be resected. The opening is about (1/16" in diameter). Finding a medication that is effective in controlling the disease (and therefore the pain) is crucial. Other strictures, like the 2012 TI one, may come and go...but this one will always remain.

We try to stretch the "medical" treatments out for as long as humanly possible. Read as, for as long as Gus can endure lengthy bouts of pain and still function as a student.

We resort to surgery when it is clear that there are no medical options that will resolve the stricture. Surgery does seem to "clean the slate." When the strictures are removed, Gus' pain disappears.

How do you maintain that state? You know your old medications/treatments were not working, so this is actually a really good time to move on to a new medication. The more effective the new medication is, the longer the disease will be kept at bay and new strictures will not form.

Gus' entire gut was a mess for most of 2012. The surgeons would not even think about removing the TI stricture until the inflammation was under control. He started Stelara two months before the surgery. But, he had also been hospitalized due to pain several times and the GI doc finally put a PICC line in and took him off of all food (= gut rest).

The short answer to your question is, I think his gut was in such bad shape at that time, that he needed all of it (gut rest, new med and the surgery). The proof is how well he has been feeling over the past eight months and how "normal" his daily routine has become. I hope we never need triple whammy again, but if that is what it takes, that is what we will do! No telling what the "new" medicine will be by then!

Best of luck to you and your boy!
Cheryl