Help 2.5yr old in hospital with severe joint pain

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butterflyb
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Date Joined Mar 2010
Total Posts : 30
   Posted 3/19/2010 1:16 PM (GMT -7)   
Hi
 
I have posted on here once before about my daughter, she is 2.5yrs and has unconfirmed crohn's disease. She has biopsies done when she was 13 months old which said they were consistant with crohn's but could be an infection also, she has had flare ups ever since so the specalist thinks it is crohn's but hasn't done any more biopsies as she is so young. She is treated with pentasa and iron suppliments, when she has a flare up she is given flagyl (antibiotic) and that seems to control it ok. Two days ago she woke up and couldn't walk. Her leg is bent inwards and is in agony when it moves, she is in hospital and was given morphine and other pain releif, but she is still sore and can't move. X-rays, ultrasounds and blood tests have been done and as far as I know so far everything is normal except her CRP is at 49, which indicates some sort of inflammation. The specalist has been contacted, he said it definately could be crohn's as it can present itself like this.
 
Anyway I wondered if anyone had experienced anything like this with crohn's disease? I really need some answers.
 
Thanks
Belinda

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/19/2010 1:24 PM (GMT -7)   
Joint pain is common with Crohns flares. But I have also heard some complain of joint pain from Pentasa, so that could be one cause. Another thought is maybe the Flagyl caused some tendon damage?? Cipro and Flagyl have black box warnings about possible tendonitis or rupture. Talk to her docs about this. I hope and pray they can get her relief from her pain. Big hugs to you and the baby.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/19/2010 1:30 PM (GMT -7)   
I agree with Gail. Those are strong for babies and anyone pretty much. On top of it, the joint pain happens to all of us.
but luckily for a little one, the damage wont be permanent.

I hope relief comes soon. I was diagnosed at 13.. but to see one at 2 years... its rough.
Male, 22. Diagnosed with Crohn's officially since 2001.. Osteoporosis, Generalized Anxiety Disorder, Chronic Anemia.

Medications Used: Remicade, Humira, Cimzia, 6-mp, Pentasa, Flagyl, Prednisone, Zifaxan, Entocort,
TPN (Total Parenteral Nutrition), The whole nine.

Current: Methotrexate Injection, Entocort EC, Vitamin D, Fentanyl 25mcg / 72hrs - Zofran - Folic Acid
Currently On SSDI


sickandlucky
Regular Member


Date Joined Oct 2009
Total Posts : 253
   Posted 3/19/2010 2:02 PM (GMT -7)   
One day before I was diagnosed and was very ill I woke up and couldn't walk but the pain and swelling was in my left ankle... I had to use crutches to walk and my ankle was huge (size of a baseball?). It wasn't fun at all, the only thing that got rid of it was when I went on steroids.
I'm so sorry to hear your little one is so sick... things will get better once you have some solid answers. Good luck with everything and keep your head up
female 20, diagnosed crohns december 2008
entocort/pentasa previously, now prednisone(tapering) & 100 mg imuran, probiotics, calcium w/d3, biotin, folic acid, zinc, omega 3s, digestive enzymes & prenatal multivitamin


isergodur
Veteran Member


Date Joined Jan 2009
Total Posts : 831
   Posted 3/19/2010 2:23 PM (GMT -7)   
I once had a case of severe joint pain and could not walk and I was just crying from pain.
They put me into the hospital gave me morphine for a couple of days and then I was fine.

I never have any inflammation or anything like that in the joints not that I can see.
Just get really stiff and it hurts like hell.

Hope your daughter feels better.
25 year old female from Iceland.
Diagnosed with :
Endometriosis march 2007
Anxiety disorder august 2007
CD/UC they don't know witch October 2008
Autoimmune Hepatitis in July 2009

Medication - Humira, Asacol, Cipralex and Cerazette.
Past medication Remicade, Imuran, Entocort
My wonderful dogs :) ~ www.poodle.is ~


grayeyedblonde
Regular Member


Date Joined Jul 2008
Total Posts : 383
   Posted 3/19/2010 2:23 PM (GMT -7)   
I don't really have anything to add to what has already been said other than I am SO sorry your baby is going through this! This has got to be heartbreaking to you as a parent to see your child in so much pain. My thoughts and prayers are with you! God bless!
Dx'd w/ Crohn's in 1979 at age 14, have had minor flares throughout the years, but mostly kept in remission. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. Was on Pred. Dr. wants to try Humira...
Currently just take a multivitamin, calcium, magnesium, and fish oil.


merrygirl
Veteran Member


Date Joined Jun 2007
Total Posts : 702
   Posted 3/19/2010 3:47 PM (GMT -7)   
please have her checked for lyme disease!!! ask for IgM and IgG western blot.

Lyme disease can cause elevated crp and sed rates as well as intestinal troubles. I do not have crohns but your post caught my eye. you do not need to rmember a tick or a bite or a rash to get lyme, I didnt.

please visit the lyme forum here or lymenet.org

good luck
Chronic Lyme Disease,Fibromyalgia, CFS, PCOS, sleep apnea, hypothyroidism, type 2 diabetes, bulging discs to name a few


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/19/2010 3:56 PM (GMT -7)   
I agree with Gail on and would like to add that pentasa did cause my joints to hurt n leg to swell quite large especially around knee area..i am so so sorry your lil one is going thru this n i know how painful your heart must be feeling i too am a mom n we want to fix our kids stat ya know..keep us posted n might b worth checking lyme forum..arming yourself with vasts amounts of info will not hurt...imho..huggs to your lil one n her momma too..lyn
Long Time Member of da Family

Crohns..Fibromyalgia,,Neuropathy...Deaf...Seizures Pyoderma gangrenosum


Co mod for Crohns...Anxiety/Panic and Alzheimers

lyn


Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 3/19/2010 5:26 PM (GMT -7)   
So sorry for you and your precious little girl.
I hope and pray your child feels better soon.

gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 336
   Posted 3/19/2010 6:10 PM (GMT -7)   
Omigod!
I had something like this when I was the same age!!!
I couldn't move my entire leg. Even when my parents applied pressure to it, they couldn't get it to move. The doctors said it was something to do with the bone marrow, but they never found out for sure because it went away after 5 days. I've always wondered why it happened.
I hope things get better for your baby!
Don't be afraid to get demanding with those doctors. Do whatever you can do to make sure your baby gets the best and fastest care.
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
My HMO refused the Remicade and now I could be going on Lialda or sulfa? blah


riesasmom
Regular Member


Date Joined Dec 2009
Total Posts : 44
   Posted 3/19/2010 7:07 PM (GMT -7)   
Yes, my daughter's joints were so inflamed when she was diagnosed at 11, that she could not walk or bend her arms. Her CRP and ESR were both very high too. At one point, they considered Rhumatoid Artrithis, but then with the bowel issues, they felt crohns. After a colonoscopy, scope, etc, crohns was confirmed. She was given Prednisone and within 6 hours she could stand up and the next day, she began to walk again and progressed from there. I hope things get better for your little one. Diana

butterflyb
Regular Member


Date Joined Mar 2010
Total Posts : 30
   Posted 3/20/2010 2:07 AM (GMT -7)   
Hi
Thanks for your replies, will be back to reply more later but thought I would share that she is walking again, just like that, so she couldn't move her leg for 48 hours and then ok, Drs said it was transient synovitis, but they can't say for sure if it was or wasn't related to crohn's. There was just inflammation in the hip. She has also had some more bloods done which will have th results soon.
Thanks so much for your caring replies
Belinda

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/20/2010 8:52 AM (GMT -7)   
I am glad to hear she is feeling better. Whew!!!! That does happen alot with Crohns, joint pain just shows up out of the blue and leaves the same. Ugghhh Crohns!! Hugs to you both!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

butterflyb
Regular Member


Date Joined Mar 2010
Total Posts : 30
   Posted 3/22/2010 2:04 AM (GMT -7)   
Hi
Can I just say that crohn's disease is f$%^ed! When my daughter was part diagnosed at 13 months I cried myself to sleep for weeks, then with the drugs they gave her seemed to get things under control and the flagyl would work ok most of the time, I was thinking well this is something we can manage to live with. So I was felling kind of ok about it and thought that she would be able to have a fairly normal life, then soething like this can happen and I never knew it could effect her joints like this, its terrible, I mean what more to this disease don't I know about, how do you manage day to day during these awful flare ups? I just fear for the life my daughter will have. I feel so depressed about the situation. We are still to get some blood work back.
Belinda

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/22/2010 7:08 AM (GMT -7)   
Once your daughter finds the right med to control her Crohns, she can still have a good life. Since my diagnosis nearly 35 years ago, I have had 3 children, 5 grandbabies, been at the same job 20 years, and married to the best man out there. Crohns is not a death sentence, but if treated properly with diet and meds, you can still have a good life. Good luck to you both!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

butterflyb
Regular Member


Date Joined Mar 2010
Total Posts : 30
   Posted 3/25/2010 11:39 PM (GMT -7)   
Hi sorry just another quick post, she has been in and out of hospital all week, can anyone tell me if the joint pain comes and goes from one side to another????

Thanks

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 3/26/2010 6:25 AM (GMT -7)   
Yes, joint pain associated with Crohn's disease is often migratory (i.e., moves around from one place to another).

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 3/26/2010 8:38 AM (GMT -7)   
You asked how we deal with cd day to day. Well, many of us here have tried and done all the meds, diets, etc, and we just keep on trying.

I'll tell you what helps the most for me and many others (in addition to meds) is eating foods that are easy to digest and taking supplements to reduce inflammation and aid in digestion.
Specifically:
A strong multi-probiotic, digestive enzymes to aid in food digestion, eliminate sugar and dairy (if dairy is a problem) or switch to goat dairy which is easier to digest, eat sourdough bread or sprouted grains or switch to gluten free.

Many of us also drink anti-inflammatory herbal teas like chamomile, green tea, etc. Some people take fish oils, bee propolis, etc. Pretty much anything that is known to be anti-inflammatory, anti-bacterial, and healing, etc.

Some of us follow The Maker's Diet (a natural and mostly organic diet that allows wheat and grains), SCD (a gluten free natural diet a little more restrictive). Alot of cders simply learn which foods aggravate symptoms and avoid them.

In addition to this, a lot of us are spiritual people and of course that probably helps the most.

It must be very hard for you to see your little girl suffer. There are other moms on here who also have children with CD and have tried various things that work, maybe someone will offer some suggestions.

butterflyb
Regular Member


Date Joined Mar 2010
Total Posts : 30
   Posted 4/2/2010 11:28 PM (GMT -7)   
Hi
 
Sorry for my lack of replies, it has been a hard couple of weeks, my DD is still getting bad joint pain on both legs and she started flagyl on Tuesday (for three weeks they said this time), it is very hard to see her suffer and she is only given pain stop not nuraphen (because gastro said no nuraphen because of stomache ulcers), when her legs are bad it is really hard to control pain. We are no closer to an answer and it is very frustrating. I personally think it is to do with the tummy.
 
Just a question as to how long it takes to calm down, she started flagyl and I am not sure how long it will take if it is the crohn's causing the pain? Dr said when tummy settles down so will joints but he didn't give me a time line.
 
Thanks again, I really am finding your posts helful.
Belinda

kittygalore
New Member


Date Joined Apr 2010
Total Posts : 2
   Posted 4/3/2010 5:04 AM (GMT -7)   
Poor little thing. Before I was diagnosed two and a half years ago I had severe joint pain so much so that my left knee swole up so bad I could not walk. i was put into hospital for two weeks and they drianed the fluid in my knee and put me on steriods which helped. It was then they diagnosed the crohn's. Try to stay positive for your wee 1. It does take a while. X

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 4/3/2010 12:30 PM (GMT -7)   
I hope and pray your baby girl will get better fast.

gypsyfp
Regular Member


Date Joined Jan 2010
Total Posts : 336
   Posted 4/3/2010 12:41 PM (GMT -7)   
Flagyl is the worst! Makes everything taste nasty.
The first time I took it, it was flagyl, and my abscess went away.
The second time I took it, the abscess was twice as bad and ruptured within a day or two.
The third time I took it, the abscess got a little smaller, but that was it.
I think that within a few days you should know if it's helping or hurting. It's more of a temporary reprieve than a strong drug.
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
My HMO refused the Remicade and now I could be going on Lialda or sulfa? blah


butterflyb
Regular Member


Date Joined Mar 2010
Total Posts : 30
   Posted 4/3/2010 1:58 PM (GMT -7)   
Hi
Thanks for your replies. Gypsyfp the thought had crossed my mind that it could be an abcess causing the pain?? Although she has had hip ultrasounds and xrays, would that pick up on abcess? Good news today she seems ok, last night she was complaining of bad tummy and leg pains but she slept through the night without screaming so I think it might be kicking in (or wishful thinking).

Kitty & Roni thanks for your replies, it is hard to stay positive, I try to put on a brave face for her, but I am really struggling emotionally with all of this, I just want my Daughter to have a normal happy healthy life. She is so good at everything she does, very active usually, but I think how can she take up a sport seriously with this illness, it could hit at any time, and not just her tummy but her joints now too. I just want her to have all the opportunities other kids have. I think I am going to push her GI for some more scopes and a diagnosis as this is crazy living like this, at least then I can acess all the resources now I am just in limbo.

Thanks & Happy Easter

ReactiveConstellationNE
Regular Member


Date Joined Dec 2005
Total Posts : 256
   Posted 4/20/2010 9:07 PM (GMT -7)   
I can only imagine....the idea of my kids going through anything remotely what I've gone through (and am continuing to, worsening/expanding to a new sub-disease with each year) is one of my worst fears. Having to put up with all the doctors and meds must be a *tremendous* challenge at 2.5 years old! Mine are 4 and 2 currently; I can't imagine getting either of them through all that, getting them to take their meds, etc....

I'm sitting here trying to come up with something to say that isn't negative....but it's difficult! My condition got much worse in the year before my son (older of the two) was born, and as long as he's been alive -- even before he was actually born -- I've struggled with the fear that he'd end up with the same things I have if not worse. There are a slew of things I can do to improve his odds, but the medical science behind these auto-immune conditions will have to advance CONSIDERABLY before either of my children are likely to get through life without at least some problems in the same vein as mine, given that both my parents and my sister all have some form of GI disease. I'm the only one who has developed Reactive Arthritis so far, probably because I'm the only one who's had bad infections (staph). But the potential undoubtedly exists in my parents/sibling as well, and odds are that I've passed on enough of the relevant genes to give my kids nearly or exactly the same risk factors.

I can avoid giving them antibiotics unless absolutely necessary.....I can decline to have them undergo tonsil/adenoid surgery as I did when I was 8....I can watch their allergies and mold/dust/pathogen exposures like a hawk...I can help them learn how to do/take any number of other things to support their immune systems' proper functioning....but none of it guarantees anything. And that's terrifying. After all, one of the main reasons I endure despite the horrible pain and other symptoms I suffer is because I want to do right by them!

All I can really think to do right now is to sympathize with you, and encourage you to vent, update us, etc as much as you are able/willing to do. Also, if any of the med sci, herb/natural/supplement info, and so forth that I've been forced to learn over the years might be of any help to you....please don't ever hesitate to ask! It bothers me beyond words to think that there might be any way in which your daughter's difficulties might be lessened that she isn't able to take advantage of just because nobody's brought it to your attention.

Know that we're thinking of you and your child, and that huge advancements will be made in these diseases over the next generation. With any luck, they'll be a thing of the past....or at least far more reasonably treatable....well before she reaches anything like our ages.
Conditions: Reactive Arthritis (AKA Reiter Syndrome), Crohn's Disease, Chronic Pelvic Inflammatory Syndrome, Sacroiliitis, Costochondritis, As Yet Unknown MS-Like Relapsing/Remitting Neuropathy, and a partridge in a pear tree.

Medications: Currently not that many are taken daily, but there are many at my disposal for part-time use. Low dose pain medication, after years at high doses. Working on innovative ways of taking lesser-known pharmaceuticals and non-prescription supplements to maximum benefit.


butterflyb
Regular Member


Date Joined Mar 2010
Total Posts : 30
   Posted 4/24/2010 3:16 AM (GMT -7)   
Hi
Exitwound sorry I just saw your post now. The only way I can get through this is to not think too much about the furture, although its so hard. My Daughter saw the rhematologist (sp?) on Wednesday, he said she has arthritis, and is sure she has crohn's disease, he was calling the gastro to tell him to step up the treatment. He says when the tummy treatment is sorted the joints should follow, so she doesn't need separate treatment. But ever since all this she is now tired, sore legs and tummy every day, the flagyl did little to help and she took it for 3 weeks (usually it works pretty well). She is so irritable its like living with a time bomb.
 
So I am just waiting for the call now to see where to go, I presume he will do more scopes to identify for sure and to see where it is exactly.
 
Thanks everyone, I am too depressed to write anymore.
Belinda 
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