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Crohn's Disease Forum » Parents of Kids with IBD » Heading Back Down the Differential Dx path


 
02-20-2012, 06:46 PM   #1
imaboveitall
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Heading Back Down the Differential Dx path

hello, sanity savers.

Well, as it is DAY 10 post initial Humira and not even a jot of change, not a speck, not an iota, I am again doubting that V's Crohn's is solely responsible for her generalized weakness (her only symptom).

To this end, I've made an appt with an immunologist/rheumatologist big dog, retired but still sees a few pts, at a University hosp for Mar 14.

I emailed her GI to say if no improvement after the next set of shots next Fri, I shall be hard pressed to keep her on Humira.
I just cannot find a single case that has weakness as the ONLY symptom.
Many on here have no GI sx, but no one seems to be bedridden with weakness as she is, and also GI sx free. All seem to be fatigued but functional; I have a neighbor who started Humira a few weeks before V; she has gut symptoms galore but still has a full time job at the post office and the energy to go to it.

Has ANYone ever heard of such a presentation, ZERO GI sx but weak as a kitten?


This forum is keeping me semi sane. Emphasis on SEMI.

Julie
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VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
02-20-2012, 08:09 PM   #2
Twiggy930
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Hi Julie,

I have very little experience in all of this but currently my son's biggest symptom, that is not being corrected very quickly by any of drugs that he is taking, is his weakness. The GI symptoms seem to be subsiding but he still becomes completely wiped from 1 - 2 hours of any kind of activity (and I am not talking about anything strenuous). When I ask how he feels he just says that he feels terrible, nothing specific just TERRIBLE. Our GI says that this is the body's response to the inflammation and once the inflammation comes under control this will go away. I hope your daughter feels better soon.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
02-20-2012, 08:26 PM   #3
Miss Underestimated
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What kind of weakness? Are her muscles weak, or is it more general lack of stamina?
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*Sick since 1987; managed on my own;
*diagnosed 2008 when I underwent emergency surgery;
*various meds and tests 2008-2012,
*Jan 2012-present, Humira. No symptoms, but scopes indicated disease.
*6MP for all of 2013.
*2014 &2015 complete mucosal healing.

**Staying on Humira for maintenance**

The statistics I see so far for my situation seem pretty good. There ARE long term statistics for the Anti-TNF drug treatments now. I'm here to make them longER.
02-20-2012, 11:24 PM   #4
AZMOM
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Julie - how do her labs look? Is she anemic? Are her systemic inflammation #s high?

J.
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Julie

Mom to Claire - 11 going on 17

Dx JRA age 3, Crohn's age 6
Acute transverse myelitis at age 5

Started IVIG September 2016
Started Tacrolimus October 2016
Neurontin 100mg twice daily
Folic Acid
Calcium/D supplement
Daily Vitamin
Daily Probiotic

No more Enbrel, Stelara, Methotrexate, Allopurinal or 6MP
02-21-2012, 05:02 AM   #5
DustyKat
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What time of the day does she take her supplements?

Since V has small bowel involvement is she actually effectively absorbing the iron supplement that she taking? I know you said in another post that despite the large amount of iron she is taking she is still has low levels. Do you think it might be worth considering an iron infusion to see if this brings her levels up and whether it has an impact on her level of fatigue?

Another thing regarding iron supplements that you may want to look into is, since V doesn't seem to be absorbing the iron supplement she is on perhaps look at a preparation that contains heme iron as well as non heme iron.

Dusty. xxx
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02-21-2012, 08:00 AM   #6
imaboveitall
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MIssU: (love that username) yes, generalized weakness, kinda like a chronic fatigue pt, not like a myopathy. She has phys therapy 2x wk now and no help there.

Twiggy: so even on pred your boy still is weak? How bad are his gut sx?

Az and Dusty: CRP is always really low, normal, or the highest it ever has been is 2. Lactoferrin always SKY HIGH but it's been that way all along and she always felt great, even when it was 5000+. Iron etc indicates anemia of chronic disease, not iron deficiency type and she for sure isn't absorbing the huge dose she gets daily. She gets the iron in the overnight feeds. But again, it's been that way for 3.5 years and always felt great despite. Doc hasn't mentioned iron infusion; her hgb is like 11.1, just over normal, doesn't seem low enough to be causing such weakness.

My main thing is if this drug isn't giving her QOL, I can't reconcile its use in this case.
The GI hooked me up with this diagnostic fellow at the Uni, so we'll see what he has to say; probably be a bust as between the GI's and my wealth of knowledge we can't think of anything this could be .
02-21-2012, 09:05 AM   #7
Tesscorm
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Hey Julie,

I can imagine how anxious you must be feeling! I wish I had some advice for you but I have no experience with Humira. But, I have heard over and over that people react differently, perhaps Violet just needs a bit more time to begin to show benefit from the Humira???

Just one suggestion, if inflammation is the cause of the weakness, etc. perhaps trying the EN on an exclusive basis for a bit might help. I realize that she doesn't have GI symptoms, however, if she does have GI inflammation, giving her intestinal system a rest may help alleviate some of the inflammation??? Although Stephen had GI symptoms off and on before being diagnosed, as had been his pattern, he'd been sick all weekend with GI symptoms but they were already disappearing by the Monday we took him to the hospital and were almost all gone by the next day. At that point, the only treatment thus far had been IV flagyl. So, even without many GI symptoms, his treatment was the exclusive EN. (But, just fyi, while he was lethargic at times, I would never have said he was 'weak'...)

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Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
02-21-2012, 09:07 AM   #8
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could she be depressed? (I could be completely off the mark with that)

I would think if it were an inflammatory condition like inflammatory myopathy or myasthenia, the immunosuppressant would help. So I'm no help, I've got nothing else. Except maybe it just hasn't been long enough to see improvement...? one can hope!

02-21-2012, 10:51 AM   #9
imaboveitall
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Tess, I considered that! But if I do it while on Humira, if improvement happens it'll be attributed to that, so I have to wait until we d/c. Def not lethargic nor tired, it's weakness. She never naps, sleeps 8-9hr. Cannot walk about the house type of weak.

LittleC, nah, not a mood thing, sunny disposition and she has measurable vitals changes upon exertion, racing heart and dropping BP. She has POTS concomittantly that the theory is, is being aggravated by chronic inflammation. Get rid of the inflammation, the POTS shall improve. But she's had inflammation since 09/08 and the weakness has only been present since 10/11. POTS was always episodic and now it's constant.

The UNI visit is likely a waste of time but at least I'll feel there's nothing being somehow overlooked.
I can't fathom that she is the only person I can find on these forums who has ONLY weakness.

Thanks to all who reply. I really feel better just connecting with other mothers who get it.

Last edited by imaboveitall; 02-21-2012 at 11:30 AM.
02-21-2012, 11:04 AM   #10
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after I wrote that I worried that it might seem dismissive- and I don't intend that at all...I've certainly felt dismissed enough times to be sensitive to that!

I just threw depression out there because of the fatigue..and I have teenagers, and I know that even healthy ones are mercurial and also impossible to read and figure out, so...

anyway, glad you were not offended.

hope you figure it out soon, for both of your sanity.
02-21-2012, 11:07 AM   #11
Tesscorm
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Have you posted the question on the General IBD subforum? When I respond to postings, I tend to go to the forums I'm most interested in at the time (Parents of Kids w/IBD, Enternal Nutrition, LDN, etc.); many times, I may just pop into Today's Posts but certainly may miss posts on the 'second page', etc. Perhaps, you'll get more responses from the General IBD forum?
02-21-2012, 11:12 AM   #12
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Hi Julie

I've been following all of your posts, I just don't always know what to say at times. I really hope that the Humira starts to give V some relief with her next dose. My daughter takes Cimzia, and while yes we did she a dramatic change in her energy the first day, it did take I would say around 6 weeks or so for her to really start to feel better on a daily basis. She had to stop it back in October to prepare for her Dec. surgery, but she will be restarting it again as soon as her shipment comes in. She did notice a HUGE difference after she stopped her injections. She has been basically begging to start them again, but we had to wait 8 weeks post-op. Her bloods are beginning to show signs of her health declining again, so her restart of Cimzia can't come soon enough.
I completely understand the fear of these "big gun" meds for our children. I spent months agonizing over which one we were going to try, if any. Bottom line was that after Gab's first surgery and we found out how much damage this disease had done to her poor body, it was not a question any longer of "IF", it was only "which one". I ultimately left the decision up to my daughter. She and I researched together, talked a lot, and she researched on her own. Her decision came down to the Cimzia because of convenience for college and the fact that its a syringe, not pen. (we didn't realize they had a syringe for Humira at the time). I hope that if the Humira does start to show great improvement for V that you may reconsider discontinuing it. Chron's is such a silent and invisible disease, one really never knows what's happening on the inside, and I hope that you and V don't find out it is much worse than you thought, as we did.

Also, I wanted to tell you that even though weakness wasn't Gab's ONLY symptom, it was a major one with her none the less. It got to the point that when she actually could make it to school on the rare occasion, she had to get a disability pass to use the elevators because there was no way she could make it up stairs. I really don't know "scientifically/medically" the exact cause of her weakness, but I thought I'd let you know that V is not alone with that symptom.

I wish you both the best and I truly hope that she sees some improvement with the Humira
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and Austin (18)
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02-21-2012, 11:23 AM   #13
imaboveitall
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Tess, good idea. I'll copy paste I guess.

LittleC, God, no, never offended at well meant words!

CMom, was weakness her predominating sx? Did she have a lot of GI stuff happening too? I know well that these kids can show up at ER with stricture even when they've been outwardly well, her GI told of two cases he personally has had recently, one a teen girl who was doing her cheerleading and living life and had no symptoms until she appeared at the ER requiring emergency surgery; he was a consult on her case but told me she "came too late" for him to help her, it was straight to surgery for her.
The only reason I'm not more worried about silent stricturing happening is the quantity and kind of food she consumes; does that sound dumb?

Another question: how many of your kids have low or normal CRP? V's is never over 2 and often normal.
02-21-2012, 11:34 AM   #14
Crohn's Mom
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Yes, weakness was one of her major issues, and low grade fevers daily.

Not to scare you, but be careful with assuming that just because she's consuming a good amount of food that she must not be stricturing. Gab never stopped eating. There were times when she would eat smaller amounts because in her words "she just didn't feel good", but she always ate. After her surgery, her surgeon said that one of her strictures was the size of a pin hole and he couldn't believe she could even drink water, never mind still continue to eat. She had several strictures, and many fistulas, and 2 very large abscesses that didn't show up on MRE, or Ct scans. She is treated at the Mayo Clinic now and has who we think is an amazing surgeon, and even tho they did every possible test on her pre-surgery to be prepared, her surgeon was completely dumbfounded at what he saw once he opened her up. Mind you, Gab has a very severe and aggressive case of CD so they say, but I question myself constantly about that. She went untreated for nearly 8 years. She presented with Mono at 15 years old and they blamed the fatigue on that; it took us 9 more months to get an official diagnosis of CD. By this point the meds that were tried (6mp, prednisone, Apriso, Flagyl, and Cipro for 1 year straight) did not work. So I question still whether her case is really that aggressive, or the severity was caused from no treatment for so many years. I still struggle with the fact that she is on Cimzia, but to me it is worth it because I never want to see my poor girl so close to knocking on deaths door again.

Last edited by Crohn's Mom; 02-21-2012 at 03:06 PM.
02-21-2012, 03:01 PM   #15
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Regarding the supplements. I may well be wrong, hell I probably am but I would be inclined to give the supplements separate to the feeds, so through the day with water and a meal. I just feel that the consistency of the feeds, and their make up, may lend them to coating the stomach and bowel and therefore inhibit the absorption of the iron. May be worth a try to separate the two??

My children are at opposite ends of the spectrum when it comes to bloods. Matt's bloods show absolutely everything, they are an accurate picture of what is happening to him even before he has overt physical symptoms. Sarah on the other hand is very different, I honestly don't think I will ever trust blood results with her again but rather look at what is in front me. Sarah always had physical symptoms, although atypical of Crohn's, and yet her bloods never showed a thing, grossly normal every single time until the night before emergency surgery and then it only showed a raised WCC (18) so not hugely so, CRP normal, (As a comparison...Matt's CRP was 357 and his WCC 35 when he presented to the ER with pain in his RLQ and he was suspected of having a micro perforation and abscess). A CT scan one week before surgery was also grossly normal. She went to theatre for a simple laparotomy with the idea of trying to find why she was so ill as they had run out of ideas, Crohn's wasn't even on the radar. They certainly didn't expect what they found, that being a ruptured and infarcted bowel with pus everywhere, so even her WCC wasn't indicative of the amount of infection present.

It isn't the norm but also not uncommon for children to have normal inflammatory markers when flaring.

Dusty. xxx
02-21-2012, 04:05 PM   #16
imaboveitall
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CMom, thanks, wow, she kept eating despite all that going on...doesn't seem possible, or make any sense! This is confounding.

Dusty, thanks also, hearing that your girl's labs were NOT indicative of the severity of her disease makes me feel better, in the way only you guys can understand. I drive myself nuts with how can she have normal CRP, white count, but high lactoferrin...why aren't all her counts way off...this is crazy. How can they be so sick and not have really abnormal labs...
02-21-2012, 04:29 PM   #17
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Yep the pred doesn't seem to be improving my son's energy levels. Granted he has only been taking it for 2.5 weeks, I had to add that up twice because it seems like it has been a month! LOL! I must really be getting impatient. His gut symptoms come and go but are mostly lower abdominal pain that he describes as a dull ache. For most of the day, however, there is no specific tummy pain. The diarrhea has lessened to about 4 bouts a day, usually all in the early morning, starting at about 4:30am. The biggest problem by far at the moment is his just feeling generally tired, crappy and unwell. I've sent him to school a couple of times lately and he has lasted only 1 hour and when I pick him up he is white as a ghost.

Take care and I am hoping for an improvement all around!
02-22-2012, 01:18 PM   #18
imaboveitall
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Thanks, Twiggy. I'm learning from the forum that the presentation often is nothing like we would expect; Dusty's kids' stories really blew my mind, and so many on here without major GI sx...I'm trying to wrap my head around this.
The idea of silent insidious damage happening while they seem outwardly well, and the weighing of risk vs benefit re: the "scary" class of drugs has been my latest obsession.

I can't wait to see if the blasted Humira is working. I want to post a success story so badly. I love to read them, they give me a lift.

Thanks to all You guys really are appreciated.
02-22-2012, 01:29 PM   #19
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Hi ... I do hope the Humira works. Other avenues that are frequently explored by undiagnosed patients are rheumatology (ie Lupus, etc.) and endocrine (ie Addison's disease). Fatigue are major symptoms for these. Please let us know what the immunologist tests for.
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02-22-2012, 02:25 PM   #20
imaboveitall
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Dmom, I know it, I got an endo consult and had her tested for Addison's and had a full hormone panel. Some of her POTS sx look a lot like Addison's and I was kinda expecting a pos result there, but it wasn't. She was tested for lupus at dx, that was neg, and she doesn't present like it either. She does present like IBD lab-wise, but I can't get past the weakness being the ONLY sx.

She goes to a big dog retired immunologist/rheumatologist at a Uni hosp on Mar 14.
I really think it won't yield any new information, but it's available, so I'll see what he has to contribute.
02-22-2012, 03:09 PM   #21
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Just thinking out loud here Julie...

V has had Crohn's for 3.5 years and during that time, although doing well, has had some mild chronic inflammation present which has now escalated. Could it be possible that this chronic inflammation has in turn triggered Chronic Fatigue Syndrome?

I know that V certainly doesn't have many of the symptoms, aside from the main one, but I well imagine CFS is as varied in it's presentation as Crohn's is.

Just a thought,
Dusty. xxx
02-22-2012, 03:47 PM   #22
Crohn's Mom
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I was actually thinking along the same lines Dusty

Julie, has she had bloods checked for active EBV or CMV viruses ?
02-22-2012, 03:57 PM   #23
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I've been saying she looks like a chronic fatigue pt since this started in Oct and I did mention chronic Epstein Barr; that was kind of dismissed by the docs. I hadn't thought about CMV; this bigshot doc she sees Mar 14 is referred to by her GI as quote "the guru of immunology and rheumatology" so I shall mention it to him. I guess he shall investigate all of these possibilities?

A new probably silly obsessive thought: she had her Mantoux test today; should've been done before starting Humira, no? Can being on Humira when having it cause a false neg if the pt does have TB?

My brain hurts.
02-22-2012, 04:07 PM   #24
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When Gab was at her worst with the fatigue she had both EBV and CMV viruses active ~ it confused the doctors and this is why they kept saying that was her "only" problem :/

Are you saying she did not have the tB test done BEFORE they started her on Humira ???
02-22-2012, 04:27 PM   #25
imaboveitall
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Nope, had the loading dose and then docs were like, hmm when was her last Mantoux...which was at dx.
She is so sheltered in our typical middle class life I was sure she hadn't been exposed to TB.
Writing that makes me sound like a moron.

But yes, done today, Fri is two weeks post loading dose.
Don't ask why neither the docs nor me who has an advanced degree in a med/sci field didn't do it beforehand. Oversight on their part, classism on mine.

I'm going to mention EBV and CMV to the bigdog if he doesn't first.
02-22-2012, 05:17 PM   #26
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I do not think a dx of CFS will help much at all ... as there is little known to the cause and treatment. If they do find a virus, then it is not considered CFS. Danny was also tested for EBV and CMV - negative.
02-22-2012, 05:31 PM   #27
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It's likely going to end up being *just* Crohn's in the end.
I'm realizing that more and more as I read these folks' stories and see how bizarrely this disease can present.

I've now read (not on here, in a med journal) of a case wherein the boy presented with iritis and nothing else. Another with joint pain and nothing else. Both ended up being Crohn's. WTF.

If Humira would just start to work I'd stop digging.
If it doesn't work I'll keep turning over every stone like the lunatic I've become. : (closest I can find to a smiley that looks crazy)
02-22-2012, 05:40 PM   #28
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Hope the docs figure out whats going on so you can stop worrying. It reminded me of something my GP said to me when I was having alot of trouble with my daughter being in pain "for no reason". She actually had the gall to say "at what point do we stop doing tests that may distress her" and all I could think was "at what point do you expect my daughter to live like this". Keep going - it is natural to want to know what's happening and how to fix it.
Good luck.
02-22-2012, 08:25 PM   #29
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Hey Julie. Just wanted to convey my support for what it's worth. No one knows better than us the frustration of having our kids sick and wondering what to do to make them feel better. You are definately doing the right thing by checking out other possibilities. How crazy is it that, with this disease, we are never sure if it's the Crohn's or something else! Hang in there.
02-22-2012, 09:59 PM   #30
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I think we're all lunatics when it comes to our kids! I know I won't rest easy unless I'm sure that Stephen is on the least risky medication that will still treat his Crohns! I may 'go along for the ride' with certain meds if/when necessary, as I think you're doing with Humira, but only until I can find something better or only for as long as I'm convinced that there's a benefit. It's a horrible situation that we are all in... for years we have protected our children from unhealthy foods, chemicals, activities and then are told that we have to give the 'okay' give them these meds that come with scary risks! Really rotten club we've found ourselves in!

I hope you begin to see some improvement in Violet. When is her next dose?
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