Friday Night GI

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Pilgrim

Pilgrim

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Jul 24, 2014
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H was tired all day and tonight she was running a fever of 101F - sleeping now of course.

Could be anything?

I know not to give her ibuprofen. Her Crohn's is acting up and she has put herself up to about 90% EN this week. So, not wanting even the food she is allowed. Is it ok to give her acetaminophen if she is still hot in the night?

No, I don't want medical advice. But....if you have been there what did you do?

She's flaring, her meds were bumped up to weekly a few weeks ago, her brother has an ear infection. I don't know what is causing it. She almost never gets fevers.

Feel free to add questions to the thread. Seems like it's always the weekend when these things come up, right?
 
We are allowed to give Tylenol (and even NSAIDs but that is because M's arthritis is much worse than her IBD) but of course, I would check with your doctor.

M has low grade fevers from both the AS and IBD but the highest hers go is around 100.4 F. They are just a sign of disease activity for her.

It could of course, also be a virus.

We were told to call the on call rheumatologist or GI if M ever has a fever about 100.5 F while she is on a biologic/immunomodulator. Did your GI give you insutructions for a situation like this? I know different practices seem to have different rules about these situations.

I would probably call the on call doctor even though it is a weekend - that's their job!

Good luck - hope H feels better soon.
 
For Ds
We have been instructed to call on call Gi anytime Ds has a fever over 100.4f of unknown origin.
So if he has strep throat with a fever of 102F - Ped confirms strep throat then we don't have to call over the fever but....
Gi requests to be notified of any infections requiring abx or a fever .

So basically we are to call and let the on call Gi decide
In the past this has meant an ER trip for Ds at the kiddie hospital so the on call GI can order
Tests starting with normal bloodwork plus mono /ebv and nasal swab for flu / adenovirus

Biologics up the risk with fever
It may seem silly or even annoying but better to be annoyed and sent home
Rather than being admitted with iv abx and discussions of pic lines ( btdt )
So I now call about it all .

All of Ds doctors including his Gi permit him to have Tylenol if he has a fever .
He is not permitted to have NSAID .


Hope the fever breaks soon
Fwiw Ds puts himself on 90% een as well when things are not going well either from and infection or tummy issues .
 
Grace gets nightly ( sometime it's 247) fevers between 99.4f to 100.9f.
I give her nothing but it's because I know that her disease is causing it.
If she suffered in anyway I would be giving it.

I've called the GI at 2 am before. Yes I feel bad but this their area not mine.

I forget, did you say she has joint pains going on?
 
Thanks Maya and MLP.

We have a ridiculous situation in that Children's Hospital is 4+ hours away. So, if it's a weekday I'd call GI office and leave a message with nurse. Not even a pediatrician or an adult GI here in the wild woods.

We have local emergency room. I could take her there and maybe they would know what tests to run. I'll bring your list above.

I will let her sleep and reassess in the morning. Maya, he probably did give me instructions but I honestly don't remember. I know he told me I had to call if she EVER got a fever. Nobody to hear the phone ring on the weekend but I will call Monday even if she's over it.

I worry about her getting put on antibiotics in the hospital. Wouldn't that just screw her up more in the gut? Can she only have cipro or flagyl? Mr. Chicken, what did they give your DS?
 
I'm wondering if it's just because of the flare, FW. I guess I'll know better in the next day if she's good in the morning and worse at night.

She's not complaining of joint pain.

I wish I could call the GI at 2am. It's probably because of people like me that there isn't that option with him. Crazy Crohn's parents.
 
We have had experiences all over the map with fever. When E was first diagnosed, she was flaring badly, and she would have night sweats with corresponding low grade fevers. Her temp would go up and down with those, often returning to normal between episodes.

A few months after she started treatment, she had a fever of about 102 for a couple of days, and was tired and lethargic. It didn't seem that bad to us, but when we took her in to her GP, she sent us straight to the ER and E ended up admitted for a week with an abdominal infection. They thought at first that she had an abscess, but later they decided it was more like micro perforations in her small intestines that led to a diffuse infection.

Last month, E had strep throat, and unlike most kids with strep, she didn't have any fever with that. We think that maybe her immune system is depressed enough right now due to Remicade and MTX that she didn't have that symptom.

Given our experience in February, my advice would be to take your daughter to your local ER if she still has a fever tomorrow. They should have phone access to a pediatric GI consultant somewhere, if you're concerned that they won't have enough knowledge of her particular situation.

E has taken antibiotics twice since her diagnosis. In February she got IV Zosyn, and for the strep she took Azithromycin. I was very concerned both times, but she didn't have any complications from them.

I'm so sorry that you have to deal with this on top of everything else that's been going on with your daughter. Hope she is feeling better very soon.
 
Not to scare you but abx may mess with the gut but when you have an immunosupressed child sepsis is a very real complication from infection.

Ds had an ear infection and was started on overlapping abx which still spread to mastoiditis ( no fever ) - admitted - iv penicillin based abx for a few days then augmentin at home for over two weeks.
Did it mess with his gut -sure
But otherwise it stopped the infection from spread to his brain or cns.
99% of Ds fevers while on ibd meds have been from simple viral infections or strep/ear infections . No complications and no admittance .

There is no GI at your kiddie hospital ????
Even at 4+ hours away they should be able to call someone from your local place .

When Ds was dx there was a place 4+ hours away and they said all of their patients are required to be three hours or less for that reason
If they are sick they need an ER .
 
What happens when you call the pedi GI office on off hours? I can't believe that there is no doctor covering.

Doctors should definitely be clear about what to do with fevers esp with patients on humira, remicade and the like. I'd definitely call the pedi gi office and see if there is anyone covering and if not, see/contact your child's pediatrician.

The way it usually works is that the pediGI or covering PediGI would respond to your phone call on off hours (through an answering service) and then give you instructions on what to watch, or tell you to go to ER or to come to the children's hospital or see your pediatrician or get labs or whatever!
 
A fever indicates that the immune system is actively fighting something. Because A's immune system sucks she often doesn't get a fever when she's ill, and sometimes she gets random fevers when she's not ill. I only give Tylenol if the fever is uncomfortable for her. Hope your girl feels better this morning.
 
How are things today Pilgrim? :ghug:

My kids weren’t as young as your wee lass when we started dealing with this so in our case Panadol was always fine to give with a temp of that level.

I hear you about rural hospitals and if I have to take my kids to our local hospital I insist that they contact the GI before they make any treatment decisions that extend anything beyond the basic, that being: Pain management, IV fluids, Flagyl, Hydrocortisone and fever control.

Good luck mum, I hope the new day see’s your baby feeling on the better side of things.

Dusty. xxx
 
You all are wonderful. So many helpful and insightful comments and the support is amazing. I feel like I would be walking in the dark otherwise.

I think rural hospitals are something you can only imagine if you've "been there". Nearest pediatrician=4 hours. Nearest ped GI = 4 hours. Our children's hospital= 4 hours. What we have is a local regional hospital with very good and caring staff but varying levels of experience with different chronic conditions. Our Ped. GI can't be reached off hours by medical staff here. Not sure about the answering service. I have no way of accessing that. If I call the office on off hours it says to go to emergency if there is a serious problem.

All that said we did go to emerg. this morning. She was only running a low grade fever (99f) but she had very little appetite and after reading the good advice here I figured it couldn't hurt. We REALLY lucked out because the physician in the ER has IC. So I didn't have to explain anything about the disease or medication (aside from listing what we were dealing with). He also knows her very well, so it was all fortuitous.

They ran labs and tested her for possible UTI. No UTI and they said they would call re: labs if anything was off.

So, we came home and went to the park and enjoyed the sunshine. Then afterwords her fever shot up to 102.5.

Well, crud. So I gave her acetaminophen and put her to bed again. Now I'm back to square one and I guess I will take her in tonight if her fever isn't down when she wakes up.

DanceMom- that is one of the reasons I'm puzzled here. I can't remember the last time she had a fever. She doesn't have immune deficiency like your daughter but her system is definitely messed up.

PDX- how did they know your daughter had an abdominal infection? Labs or something else diagnostic?

Mr. Chix- your stories make me err on the side of caution.
 
Oh, I'm so sorry to hear that the higher fever came back.

When we took E to her GP, she had some rebound abdominal pain when the doctor pushed on her abdomen (although it wasn't really different than the pain she always had at that time, since she was still flaring). Based on that and her fever, they did a bedside ultrasound to look at her abdomen. They thought they saw a fluid collection, which could have been an abscess or an inflamed appendix, so that's when they sent her over to the ER at the children's hospital. A surgeon came in right away to talk to us. He didn't want to operate based only on an ultrasound, so he ordered a CAT scan. The CAT scan showed that the fluid collection was actually just a loop of inflamed intestine, but it also showed some fistulas between loops of intestine, and some microperferations where her intestines were leaking into her abdomen.

Her treatment was IV antibiotics (zosyn) and also IV steroids (solumedrol) and I think both helped her a lot. Her fever came down right away, and the pain went away too. She had been on Remicade for a few months at that point, and had just started EEN, but hadn't had any steroids yet.

After she went home from the hospital, she started on budesonide and MTX, along with continuing EEN for another 6 weeks, and that was when she finally started getting better.
 
One more thing. E's sed rate and CRP were high when she had her infection, but that didn't help with the diagnosis since they had been high for months with her flare. It can be very hard to distinguish between an infection and a flare, since both cause a similar immune reponse in the body.

I hope you get some answers soon!
 
I’m so sorry to hear that things haven’t settled Pilgrim. :ghug:

Hopefully an infection that was causing fever would show up in her White Cell Count. Particularly since immunosuppressants can mask a fever but this isn’t so in your girl’s case.

After my son was diagnosed he was being treated but continued to flare in the lead up to surgery. He was on Imuran, Prednisone and antibiotics but during this time he often spiked temps up the 39C.

Does she have any pain?

I would take her back if the fever doesn’t settle.

Is she tolerating fluids?

Dusty. xxx
 
A couple years ago we had made the decision to travel all the way downstate to the GI if her symptoms at that don't subside.
We didn't want to risk her being stuck up here with medical people that weren't trained or part of her team.
It's good that the doctor at the rural hospital understand. Maybe keeping his name handy will help you in emergency.

You should have the talk with your GI about the what if's.
This has to be covered for your girls safety!!!!!
 
Talk about weekend issues! My husband is a Crohnie and there is always some issue or the other cropping up during the weekend and I can't even call anyone. I really don't know how I'm pushing through. Hope your little girl feels better.
 
DustyKat - that was the one number he had for me before we left the hospital today. Her WBC was 3.4

He said that was low but seemed to be expected with immunomodulators.

So, it was low and not high.

No pain and about half the calorie intake (just half the EN plus a few slices of fruit) she usually has. She was a bit dehydrated so at the hospital she drank quite a bit in order to produce a urine sample and so they could tap a vein.

FW yes, I need to have a plan!

aarti - Have you tried the search function on this forum or the Forum Wiki? I find it's helpful to go in and search symptoms (for instance) and read through past threads on relevant topics. It can be informative or at least a time killer while you're waiting to call someone!
 
Fwiw two days before hospital admit ( a Friday of course ) for mastoiditis
Ds saw ent and he had his normal Gi bloodwork
Sed rate was sky high at 68
So much so the Gi called first thing Monday to get a plan together and more bloodwork - but Ds was admitted by that point ;)


Hope it's just a bug
With a Ped so far away what happens if your kids get sick with strep or an ear infection / flu etc...,
 
All I can do is take them to our primary care provider if possible, or if I can't get an appointment our only other choice is ER.

Isolated location means that ER also doubles as basically a walk in clinic.
 
Pilgrim -hope the morning brings some healing and relief.

There is a whole army of us out here supporting you and your baby girl!
 
Oh Pilgrim I hope she feels better.
I can't even imagine being so far away from doctors - yikes! You're very brave!

I would definitely ask the GI for a plan next time because unfortunately, young kiddos do get regular kid viruses and infections quite often. I can't believe they don't have an on-call doctor and number for you to call (though I do know things work a bit differently in Canada). Could you at least get an email address for when things come up on the weekend?

Hope she feels better you don't have to take her in.
 
Immunosuppressants may still be masking those numbers Pilgrim or she may just not be producing the numbers you would expect with an infection. The other thing is it may be driven by inflammation, I imagine they did bloods for ESR and CRP too?

We are in the same situation as you Pilgrim. GI is three hours away and when the kids were younger the closest Children’s hospital and Paediatric GI was 7 hours away. We have no after hours doctors or clinics within cooee of us so anything that needs attention over the weekend is done via the Emergency department at the local hospital.
That said the kids GI has given us his mobile number and email address as has the IBD nurse. They do this with all their IBD patients regardless of location. I wonder if your local hospital has access to your specialist where you don’t? If the GI won’t allow you to access their number would they be willing to give it to the Emergency department? Might be worth asking.
Your local hospital should be able to liaise with an after hours paediatric GI at the children’s hospital should they need advice. Not as ideal as your own GI but better than nothing.

Thinking of you. :heart:
Dusty. xxx
 
Viruses can lower WBCs. So a low WBC combined with a fever...good chance you're dealing with a virus that needs to run its course. If she's eating and drinking it can probably wait until Monday.
 
Hi Pilgrim,
How is your daughter feeling today?
Thinking of you both and hoping that she is feeling better.
-xmdmom
 
Thanks xmdmom, she's not great. She had diarrhea in the night, which is always a bad sign. Fever spikes to about 102.5F, I knock it down with Tylenol, then later on it spikes back up. She's taken in only about 550cals each day (EN) for the past two days. Not really into food.

I'm managing her symptoms at home because I'm holding out to talk to the GI tomorrow (Monday). They already ran the obvious tests at ER yesterday morning, so I think we need more direction.

Maya- this GI doesn't "do" emails. But, yes, we need to have a protocol. And Dusty, you are absolutely right, if nothing else I should be able to hook up our local ER and an after hours contact. I would guess they did ESR and CRP, but they didn't mention which tests they chose to run. They only took 2 vials (we are used to 8). She doesn't show elevated CRP at all and ESR only when she is really badly off. So maybe they will see something there.

If it is a virus, do immune suppressed kids have the Crohn's affected and then go back into remission after a virus has run it's course? Would we need something extra to kick her into remission again even with the Humira?

She's not getting her shot until I talk to a GI.
 
For DS per his GI
No humira until the infection is cleared
Either bacterial or viral

No humira with fever

When he had the adenovirus in January
No humira till the bloodwirkwas clear of the virus ( took three weeks)
With mastoiditis /ear infection (5 weeks )
Fungal toe infection( 3 more weeks )

So it could be a bit .
We had to use een to try and get back into remission since humira was held
Not necessarily due to the virus or infection
 
I'm sorry that she's still feeling ill. I would not hesitate to go back to the ER if she seems significantly ill or seems to be getting worse, and then ask the doctor to contact the children's hospital for direction.

I am feeling pretty angry that your daughter's gi left you in this situation, with no one on call who is really knowledgeable about her situation!
 
Thinking of you all. It's hard any time your child isn't feeling well, but it's extra hard when you can't get in touch with her doctor. Hope you get some good guidance tomorrow. And I agree with the advice above to take her back to the ER if there's a turn for the worse.
 
Thinking of you and your little girl!! I hope things have improved?? :ghug:
 
Thanks Tesscorm. She's not eating, but fever is back to low grade and hasn't crept up yet today. We are waiting on a call back.
 
A quick update: GI thinks it's probably a virus. We're to hold Humira until she is 48 hours fever free.
 
Thanks, Maya. Fever's gone and now she has a sibling developing a fever so GI was spot on that we had a virus.

Still getting used to the disease. Because she was already in a flare I guess it just made things worse in her GI tract (ie night bm and no appetite)

I guess in the end it was still good I played it safe and had her looked at. With this disease it can be just a virus, or an abscess.
 
We say that all the time around here...so many symptoms could also be normal kid stuff also. You get used to it and learn the sure signs for your kid. The first year is the learning year. With the young ones I think you have to be extra vigilant because even if it is a virus, it could wipe them out pretty fast so best to get it checked no matter what it is.
 
I feel a little stupid taking her in when it is "nothing", but on the other hand I've been on the other end where I should have taken her to ER and instead waited and it caused a lot of suffering.

I'm a year in now as a Crohn's parent. Just a slow learner :)
 
It probably took a good two years for me to not think CROHNS!! and panic at every symptom! What's that saying?? Once burned, twice shy... We've all been through the experience of finding out that those 'normal kid, virus/bug' type symptoms were not so normal after all!! It takes time to find your comfort zone again when dealing with symptoms. And, even more difficult when crohns and med's side effects mimic so many common symptoms! :ymad:

I still have occasions when I think 'oh, why did I panic and email/call dr?!?' :blush: but then I think 'Too bad, it's my kid and it's their job! Better safe than sorry!' AND, he's 21!! :rof:

As was said above, in time, you will feel more comfortable with what's normal or not and, if there's ever any doubt, especially given her age, you're more than right to check with the doctor!! :ghug:
 
Glad to hear that the fever is gone. And yep, I subscribe to the "better safe than sorry" school of thought too! Hope the virus runs its course, and all your family is back to good health soon.
 
Took me a good two years too and now we are 7 years into our arthritis journey and I still second guess myself all the time!
Hope H is back to normal soon!
 
Honestly with humira on board you have to be cautious
But you do learn when and what after a bit
DS has been dx almost 4 years in Sept with crohns
And 1 year with jspa this
July

It just takes time but you will get there
Given her symptoms our Gi would have still had DS be seen by an me and get blood work

Glad it worked out

DS had a rush admit and scope - when all he really had was sjogren syndrome
But when infection is high on the list of possibilities the docs have to rule it out .
So give your self a break
 
Pilgrim said:
I'm a year in now as a Crohn's parent. Just a slow learner :)
Click to expand...

Hell, what does that make me then! :ylol:

Meh, any symptoms the kids have, and I mean any! :lol:, I still text the GP and suss out if anything is going around just to be on the safe side and settle my over active imagination. :shifty-t:

Hope things are now going well with your lass, Pilgrim. :heart:

Dusty. xxx
 

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