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07-07-2016, 10:59 AM   #1
malorymug
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10 days with fevers

Ds has had fevers (up to 103) in the evenings for the last 10 days. I Talked with GI several times during that time and they told us in the absence of other symptoms treat with Tylenol and go to Remicade infusion today. The Infusion center wouldn't even let us in the door with a 102 fever (with good reason). So we go downstairs to the GI clinic and they tell us to go see our PCP (GI doesn't do fevers, fair enough). Our PCP is useless. And this mama bear suddenly decides that we have got to get to the bottom (pun punny) of this. So we walk into our infectious disease doctor's office hoping to get some help. She released us back in April so it was a last effort. What specialist will take a walk in? She did! And she was amazing. Super thorough. And now we are waiting for a whole work up.

I just can't sit back and let his whole childhood be swallowed up by Crohn's. He was just getting his life back.

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Mom to: 15 year old boy
Crohn's in stomach, small intestine, large intestine, and perianal disease
Diagnosed April 2014, at age 13

Currently taking:
Remicade 10mg/kg every 6 wks
Methotrexate 7.5 mg/wk
Cipro
Augmentin
Miralax

previous meds:
6mp 50mg
Flagyl
Cipro
Prednisone 30 mg
07-07-2016, 11:31 AM   #2
Maya142
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Oh no!!! Do they think his abscesses are back? Are they planning to do an MRE?

Glad the infectious diseases doctor is checking things out. I'm kind of surprised they haven't admitted him given the meds he's on.

Poor kiddo, I hope they figure it out quickly. Sending hugs!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
07-07-2016, 11:37 AM   #3
malorymug
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I'm afraid they are back. They are trying to rule out other stuff before another MRE. I'm sorta expecting an admission.

07-07-2016, 12:10 PM   #4
my little penguin
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Yeah I am surprised the Gi or pcp didn't send him in to the ER for bloodwork look over /admit
I know with Ds 3-4 days of fever without a known cause is it
And even then they still send him to ER most of the time
Glad your ID doc is on top of it
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DS - -Crohn's -Stelara -mtx-IVIG
07-07-2016, 05:25 PM   #5
xmdmom
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Really glad you have an ID doc! I can't believe the GI doctor said get the infusion -
I mean I believe you but sheesh!
07-07-2016, 05:49 PM   #6
CarolinAlaska
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I love your ID doc! I am disappointed in your PCP and GI! What kind of window do you have to be late on the Remicade? Is he having pain or feeling poorly?
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Carol
J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), taking pred only. NG feedings nightly.
Osteoporosis/osteopenia, Scoliosis, EDS, Asthma, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety, postural tachycardia/POTS and multiple food allergies.
07-07-2016, 08:02 PM   #7
pdx
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I really hope they find the source of the fever quickly. I'm glad you were able to find a doctor who would take this seriously, but how frustrating that you had to go to such lengths to find one. Keep us updated.

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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
07-08-2016, 11:08 AM   #8
kimmidwife
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I would be pretty upset with his GI doc over this. Fevers is a contraindication to remicade. I would make a big stink and call the Head of the practice and speak with them about this.
Very very glad the ID doctor was able to see him.
Please keep us posted.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
07-08-2016, 05:32 PM   #9
malorymug
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Tests are back. ID doc thinks that all the abnormals are IBD related. GI doc isn't convinced or impressed with labs. He thinks it is something outside of his scope. Soooo, we are scheduled for Remicade on Monday and still running fevers of 101 all day today.

Wanna play "Interpret the labs?, here are the abnormals

WBC (4-13) 19.2
ESR (0-13) 17
CRP (<1) 5.7

Sorta boring and IBD-y right? But then there is this, and I can't figure it out:

EBV EARLY ANTIGEN AB, IGG (0.0-10.9) <5.0 U/mL Final ARUP
INTERPRETIVE INFORMATION: Epstein-Barr Virus Antibody to
Early D Antigen (EA-D), IgG
8.9 U/mL or less........Not Detected
9.0-10.9 U/mL...........Indeterminate - Repeat testing in
10-14 may be helpful.
11.0 U/mL or greater....Detected

EBV NUCLEAR ANTIGEN AB, IGG (0.0-21.9) 308. U/mL High Final ARUP
INTERPRETIVE INFORMATION: Epstein-Barr Virus Antibody to
Nuclear Antigen, IgG
17.9 U/mL or less.......Not Detected
18.0-21.9 U/mL..........Indeterminate - Repeat testing in
10-14 days may be helpful.
22.0 U/mL or greater....Detected


EBV VIRAL CAPSID AB, IGM (0.0-43.9) <10.0 U/mL Final ARUP
INTERPRETIVE INFORMATION: Epstein-Barr Virus Antibody to
Viral Capsid Antigen, IgM
35.9 U/mL or less.......Not Detected
36.0-43.9 U/mL..........Indeterminate - Repeat testing in
10-14 days may be helpful.
44.0 U/mL or greater....Detected


EBV VIRAL CAPSID AB, IGG (0.0-21.9) 156.0 U/mL High Final ARUP
INTERPRETIVE INFORMATION: Epstein-Barr Virus Antibody to
Viral Capsid Antigen, IgG
17.9 U/mL or less.......Not Detected
18.0-21.9 U/mL..........Indeterminate - Repeat testing in
10-14 days may be helpful.
22.0 U/mL or greater....Detected

I think this means he has had mono in the past but no active virus. What do you think.
07-08-2016, 05:36 PM   #10
my little penguin
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Agree
I think that just means mono in the past
Can't believe he has fevers thus long and Gi still agrees to remicade
Plus high crp and esr
07-08-2016, 05:50 PM   #11
xmdmom
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Agree it looks like past infection if IgM is low and EA is undetectable but EBNS IGG and VCA IgG is high.

http://www.biomerieux-diagnostics.co...bv-graph-b.jpg
07-08-2016, 05:57 PM   #12
Maya142
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But since he has a history of abscesses and fever and a high WBC, aren't they concerned about those? How can they know that he doesn't have abscesses without an MRE?

I'd be worried about giving Remicade if he still has a fever. We were told anything over 100.4 is concerning...
07-08-2016, 06:02 PM   #13
xmdmom
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Were there any symptoms associated with the fevers?
07-08-2016, 06:12 PM   #14
malorymug
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No symptoms other than being sluggish but that comes with the fever itself.

Oh and dropped from 111 to 105 in two weeks. Weight loss is his biggest symptom of IBD.

07-08-2016, 06:14 PM   #15
xmdmom
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So are you hearing back with the ID doc? Seems like a fever of that duration would warrant more testing. Did they do blood cultures?
07-08-2016, 06:36 PM   #16
malorymug
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I'm really frustrated with the GI doc that he isn't worrying about the abscesses. The last MRE was done in April and they had gone but fistulas remained. Did I mention that we just changed remi back to 8 weeks from 4. I think this was a huge mistake. 8 week intervals is when the abscesses grew in the first place.

07-08-2016, 06:47 PM   #17
malorymug
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They did blood cultures. No growth yet. It takes 7 days for final results, right?

07-08-2016, 08:26 PM   #18
pdx
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I would be frustrated with your GI too. Going from 4 weeks back to 8 weeks all at once seems crazy. That weight loss, combined with the fever and those labs, should have your GI concerned. So sorry that you're having to fight on this.
07-09-2016, 06:37 PM   #19
my little penguin
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I would think 4 to 5 or even 6 but not 8 week intervals
Wow !!
07-09-2016, 07:13 PM   #20
Maya142
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Yes, we've always gone from 4 to 5 weeks but never ever just jumped to 8 weeks (actually, we never made it to 8 weeks at all).

How's he doing now?
07-09-2016, 07:20 PM   #21
malorymug
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Still fevery (is that a word?). Laying in bed watching videos. It is almost a worse feeling because he has been better for a few months so we know what he should be like. But we are just trying to figure it out.

07-09-2016, 07:22 PM   #22
malorymug
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Thanks for letting me know that you advance a week at a time. I will insist on that. I get the feeling that they don't get many pushy moms. But I really am done with sitting back and watching my kids childhood disappear.

07-09-2016, 09:25 PM   #23
kimmidwife
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Malory,
I would be really frustrated with his doc too. Can you go to someone else for another opinion? I would really be hesitant giving remicade with a fever. What does the ID doctor think?
07-18-2016, 04:40 PM   #24
malorymug
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An update. We infused Remicade last Monday (week 9), he was kinda fever free (99.9). We checked his Remicade level at week 8 and it was 3.2 (my doc is aiming for 8-10). We will be going back to 6 week intervals and 10mg/kg.

Since then we went on vacation and he isn't feeling great (like when Remicade was every 4 weeks). He sleeps 12-16 hours and says he doesn't feel great. He just feels blah no specific complaints.

I'm feeling helpless. How much should I push? What can the doctors do? Luckily our vacation is low key and he can just hang but I just hate that his summer is like this.

07-18-2016, 04:44 PM   #25
Maya142
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Have you considered a second opinion? At one of the big IBD centers like BCH, CHOP or Cincinnati? I know it would mean traveling, but it might be worth it.

It sounds like he needs more aggressive treatment. If he was doing great on Remicade every 4 weeks, it sounds like he needed to stay on that schedule.

Have they checked anemic? My daughter was like that when she needed iron infusions - slept a lot and was just SO tired, all the time. In her case, her HGB was a bit low but her Ferritin was REALLY low. We tried oral iron supplements and they didn't help, so we moved on to infusions, which made an incredible difference.

Sending hugs - it is SO hard to watch your kiddo suffer.
07-18-2016, 04:46 PM   #26
kimmidwife
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I agree with Maya. It really sounds like another opinion is needed on this. Sending you a huge hug.
07-18-2016, 04:55 PM   #27
xmdmom
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So is the fever gone now?
How's his weight? I think you said he had lost some weight. Is it still dropping?
How's his appetite?
How much does he usually sleep?
How does he look to you?

What can a doctor do? A good doctor should be able to eyeball him and know if he's quite ill or not. And if he looks significantly ill, then he needs further tests to find out what's going on.

Sending hugs!
07-19-2016, 03:48 AM   #28
Sascot
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Hopefully the change in schedule will help again, frustrating they took it back to 8 weekly. Sorry the summer holidays aren't going to be much fun but at least he can rest when needed
08-04-2016, 10:49 AM   #29
malorymug
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Fevers are back. 101 for the last two nights (99 ish during the day). He was released from infectious disease just last week (with perfect blood work)! It has been 3 weeks since the last fever and since the last Remicade. Next Remicade is scheduled in 2 weeks (6 week intervals).

I took him to the pcp today just to dot my I's and cross my t's. They swabbed him for flu and sorta shrugged their shoulders.

I feel like screaming.
08-04-2016, 11:27 AM   #30
my little penguin
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I forget does he have joint issues /back pain etc at all??
JSpA can cause fever with inflamed joints etc...
Has he seen a Rheumo recently since other autoimmune stuff can also cause fevers
Might be worth a call
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