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Crohn's Disease Forum » Parents of Kids with IBD » C is having symptoms


 
02-16-2013, 12:37 AM   #31
Clash
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Thanks MLP, I hope this is just residual viral stuff. The ped GI we saw was super nice and she said she didn't think he was going to be real bad off but wanted to watch him during miralax push and run some tests. Is mucus telling of anything?
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
02-16-2013, 06:15 AM   #32
Dexky
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Sorry to see he's going through so much Constipation has never been an issue with us but EJ always has mucus when there's a problem. I think it's the bodies response to inflammation. I hope you get things sorted quickly for him.
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EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
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02-16-2013, 07:18 AM   #33
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Ughh his eye inflammation, episcleritis is back! His seems to run along with a flare but I don't recall can it run with or without a flare?

We had 5 sachets of miralax, he had 1 bowel movement after the first sachet hasn't been since. He's been finished with miralax for about 4 hours. Not sure if his lack of more movements is due to not having ate much this week or what.
02-16-2013, 07:25 AM   #34
Niks
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Hope C starts to pick up soon! You've all been going through it . Hopefully now he's been admitted you can start to get on top of things.

Thinking of you guys
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Daughter 22, 1. Upper GI and colonic dysmotility with viscernal hypersensitivity.
2. Predominant Constipation with slow colonic transit and moderate gastroparesis,
3. Nephrolithiasis
4. Osteopenia bordering on osteoporosis



Peristeen Irrigation every other day.
Citramag/Picolax

Waiting for bowel stimulator!
02-16-2013, 08:53 AM   #35
my little penguin
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Miralax can take up to three days to work since The colon can store about three days worth.
5 satchels = 5 capfuls???
Did they also give a laxative ( senna or ducolax)?
If not it just may take more time .
I am sure they are waiting in X-ray results to see how much to push it.
Typically when DS is increased to one capful given his age and weight things move forward in about 24 hours .
DS aslo has mucus/blood when things are not quite right.
Hope things improve
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02-16-2013, 09:21 AM   #36
Tesscorm
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Sorry it's reached the point that he's had to be admitted! But, I am glad he's there and being taken care of!! I hope you get some of the results today.
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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
02-16-2013, 09:23 AM   #37
Farmwife
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Yes, miralax takes awhile. Grace was on 1 1/2 capfuls a day and still wouldn't go everyday.

How's he doing now?
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
02-16-2013, 10:16 AM   #38
Clash
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MLP I'm not sure if 5=5 or not it seems one of the nurses said its a little more than a capful but I was so jumbled by the fact they were admitting him, I'm not sure. They also gave him a dulcolax suppository. Ped GI came in said she was going ahead with his Remicade today keeping him tonight for observation and possible doing an MRE on Monday. I think if she decides not to do MRE then he may he released tomorrow.
02-16-2013, 10:49 AM   #39
Jmrogers4
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Hope it all gets worked out, sorry it has gotten to the point where they admitted him but hope everything gets taken care of and he is "moving" along soon
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Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
02-16-2013, 12:49 PM   #40
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He's sleeping while they are infusing him. I forgot, GI also said SED rate wasn't to high, 24 but then asked does he show in lab work. All I could tell her was flare before last they called and said blood work looks good then FC test came back 1700. He has complained of his knees a lot today and they have heating pads and are giving him tylenol still not one GI pain, cramp nothing. Still only that one bm, he's ate breakfast and walked around the floors since then. I asked if I should expect another bm and the GI laughed and said who knows with this fella. She said they may push miralax again.

C didn't like the idea of doing Remi today he thought it was too soon and he was a little frightened by it I think.
02-16-2013, 07:02 PM   #41
CarolinAlaska
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Sorry about all the problems C is experiencing. Hospitalization puts everything in a tizzy too, doesn't it? I hope he is feeling better quickly and everything starts moving right.
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*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
02-16-2013, 09:25 PM   #42
Tesscorm
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C didn't like the idea of doing Remi today he thought it was too soon and he was a little frightened by it I think.
Poor kid, it's just not fair that, at their age, these kids have to worry about treatments!!

Hope the night goes smoothly and he's beginning to feel better tomorrow!!
02-18-2013, 11:23 AM   #43
Clash
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Well, we made it home from the hosptital yesterday. I do believe C had multiple things going on which made it hard to determine what was what. He is on a z-pac for the sinus earache/coughing. He had his Remicade treatment on Saturday afternoon.

He was in alot of pain, joint and stomach cramps, Saturday night but due to the constipation he couldn't have any pain meds(we used tylenol and heating pads). When they brought up pain meds causing constipation I realized his GP had px'ed a cough med with pain meds in it. So that is probably why no bm for so long, combined with no appetite from sinus earache issue.

That still doesn't explain why the joint pain and eye inflammation started occuring so I guess he was flaring too? He's never had joint pain or eye inflammation show up when he wasn't in a flare but he usually has fevers and mouth ulcers too.

His knees were still hurting pretty bad at discharge time but as the evening wore on they seemed to improve. He did have some urgent bms last night but other than being a 6 on the Bristol scale there was no blood or mucus.

Now we wait for the antibodies test and the FC test, should be Wednesday. Not really sure what the next step is, the hospital doc felt sure C's GI would want to MRE or scope possibly both. She was going to have the office call me but said if I don't hear from them by Wednesday call them.

Also, if this Zpack doesn't do it's thing we will be going back to Ped to get to the bottom of his sinus issues. Thanks so much for all the thoughts and hugs, I really hope things are improving and that we will see a clear plan or direction soon!
02-18-2013, 11:59 AM   #44
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I hope he feels better real soon!
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Son Alec 13yrs old - DX 11/2012
Remicade
Methotrexate 12.5 MG Oral & Zofran weekly
Folic Acid Daily
2000 IU Vitamin D Daily
1000 IU B-12 Daily
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Failed - Pentasa
02-18-2013, 12:24 PM   #45
my little penguin
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Never easy
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02-18-2013, 12:53 PM   #46
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Glad you are home and infusion went ok. Hope things settle down soon, poor guy deserves a break.
02-18-2013, 01:03 PM   #47
Tesscorm
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Glad you're home! I hope today brings less knee pain and that he feels better from his sinus issues.

02-18-2013, 01:19 PM   #48
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Glad you are home and hope things keep improving
02-18-2013, 01:28 PM   #49
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Thanks, you guys. Well as it goes, Remi did it's thing and he woke up feeling really good today. I think the hospital schedule has his sleep schedule messed up because he slept late but he was up and right into the shower which I think means very little fatigue. He said his joints felt good, and no more tummy issues or weird, urgent bms. I truly hate this diesease!

I am hoping the FC and antibody test give us some answers or a direction. I really don't want to give up on Remi but 3.5 to 4 weeks of effectiveness is not enough to allow him to lead a normal life and make it through school. He's missed two weeks and has to be overwelmed, I know I am.
02-18-2013, 05:37 PM   #50
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So I have a question for all you parents that have kids that deal with pain and how you quantify it.

Throughout the admission process and up until discharge C was questioned about his pain level, where is it 1-10. After one particularly bad bout where I knew he wasn't coping well he told the nurse 4 maybe 5. I don't remember them explaining the pain other than 10 would be the worst kind of pain and 1 would be a minor irratation that doesn't come to mind often.

When the nurse left the room I got the little "Smiley Face/word descripton" pain scale and showed him what it had for 4, it had a sad face and "hurts a little bit more" typed under it. He said going by that scale at it's worst I would be at an 8 but a 6 this last bout. I told him you need to tell her that and he said I don't want her to think that I'm making up the pain because I'm the one feeling it. Ummmm........

So how does the rest of you explain to your kids how to rate the pain?
02-18-2013, 05:58 PM   #51
my little penguin
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Mine is younger but he was having pain daily for a long time and we needed to track it.
For DS
1-2 it hurts but more of annoying pain - you can do what you need to
3 it hurts - you need a hot pack to make it feel a little better- you may be resting but not constant
4 -5 not much is going to help . You wAnt to rest - some crying involved
6 = fetal position - lots of crying possible vomiting .

Our Gi is aware of DS unique rating system and knows just how bad it is by number now.
DS has also been very consistent in how he rates it.
This has helped us gauge what helps and what does not.

I think if you can help C interpret his own scale - then just translate it for the docs and nurses .

Hope that helps
02-18-2013, 06:11 PM   #52
Clash
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That sounds reasonable because 1-2 don't mean anything like a paper cut 3-4 is aggravating but he's still mobile and able to carry-out activities and 5-6 is heating pads and tylenol just aren't getting it under control. He explained 8 much like your 6-fetal position, rocking, tears and nauseated due to the pain. So I can just give C's idea of the scale to the doc? I'm going to put this in writing and put it in my handy dandy notebook...Did I just quote Blues Clues? Yikes!
02-18-2013, 06:25 PM   #53
Tesscorm
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Just about what u said thhat remi is wearing off after 3-4 weeks... Not sure if this has been suggested to you but my friends daughter is on remi and mtx but she is getting symptoms after 4 weeks too; they are most likely going to move her to a 4 week schedule. Also, not sure what dosage C is on but while it is usually 5 (mg/kg???), I did read of another member moving up to 10. just a couple of possibilities...
02-18-2013, 06:36 PM   #54
Clash
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Thanks, Tesscorm, C is at 10mg/kg and I know the 4 week schedule came up at one appt. early on, and only in the context of GI hates going to four because the kids start to find it such an imposition and it is harder to keep them compliant when off at college.

Ughh...I'm so impatient, I just want to see the test results.

BTW, C might not be as far along as I thought, he still feels like at any moment he is going to have a bm but just not quite there and he said joint pain was still there but not keeping him in bed bad. Still feels really fatigued but I think this may due to hospital schedule/sleep schedule mess up.
02-18-2013, 06:59 PM   #55
Jmrogers4
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Jack's GI usually ups pain scale from whatever Jack says as he seems to tolerate a high level. He broke his foot last year in the morning during PE at school went all day on it and then practiced football that afternoon running wind sprints for nearly 2 hours. When I picked him up he had tears running down his face wasn't sobbing just the tears and said his foot was bothering him.
I like your descriptions of your pain scales we may have to use that because when he says 1-2 it's a broken foot.
02-18-2013, 07:04 PM   #56
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Jmrogers4 that is why I asked the question too, because the nurse came in later that night when C was finally asleep and I was telling her about the convo C and I had. She said in her experience on the IBD floor she has found that IBD kids seem to treat some amount of pain as normal. She thinks alot of them have dealt with it for awhile before dx so it becomes their norm. She said it makes it harder to determine where they are at on the pain scale at times.
02-18-2013, 07:10 PM   #57
Jmrogers4
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Makes sense that it would just feel normal to them.
02-18-2013, 07:13 PM   #58
Clash
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I know it sucks to think of it in those terms. Our poor kiddos, C has said that until that first Remicade he thought how he had felt for so long was normal and if he hadn't started having the fevers and mouth ulcers he never would have known that it wasn't supposed to feel that was with his stomach.
02-18-2013, 08:02 PM   #59
Tesscorm
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Hate that this is the case for all our kids!

I hope he really does begin to feel better by tomorrow!!! As he only had the remicade on Saturday and is also fighting the sinus issues, hopefully, it's just taking a bit longer for the remicade to really kick in!!! Wishing tomorrow brings a better day for him!
02-18-2013, 10:55 PM   #60
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Next question, sorry guys I know I've been on question overload. C has been complaining of hot flashes today, anyone's kiddos experienced that with CD or Meds? It is new for C as far as I recall. He used to have night sweats but I think part of that was running fevers at night or at least when I started taking temps that was what was happening.

Edit: He said the only time he remembers feeling hot flashes like this was when he was on pred and had just started Remi last year.(he is not on pred now) But the hot flashes went away when we tapered of pred.
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